As healthcare organizations become more complex and our focus on the patient experience expands, nurses are leading and participating in evidence-based practice (EBP) projects and quality improvement (QI) initiatives with the goal of improving patient outcomes.
In order to receive full credit, you will need to clearly respond to both parts of the question using subtitles or bullets AND cite at least one scholarly reference in your response.
Medical Ethics
Accounts of
Ground-Breaking Cases
EIGHTH EDITION
Gregory E. Pence
University of Alabama at Birmingham
pen07945_fm_i_xxii.indd 1 09/12/16 8:52 PM
MEDICAL ETHICS: ACCOUNTS OF GROUND-BREAKING CASES, EIGHTH EDITION
Published by McGraw-Hill Education, 2 Penn Plaza, New York, NY 10121. Copyright © 2017 by
McGraw-Hill Education. All rights reserved. Printed in the United States of America. Previous editions
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transmission, or broadcast for distance learning.
Some ancillaries, including electronic and print components, may not be available to customers outside
the United States.
This book is printed on acid-free paper.
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Library of Congress Cataloging-in-Publication Data
Names: Pence, Gregory E., author.
Title: Medical ethics: accounts of ground-breaking cases / Gregory E. Pence,
University of Alabama at Birmingham.
Other titles: Classic cases in medical ethics
Description: Eighth edition. | New York, NY: MHE, [2017] | Audience: Age:
18+ | Editions 1-5 published under: Classis cases in medical ethics. |
Includes bibliographical references and index.
Identifiers: LCCN 2016026704 | ISBN 9781259907944 (alk. paper)
Subjects: LCSH: Medical ethics–Case studies.
Classification: LCC R724 .P36 2017 | DDC 174/.2–dc23 LC record available at
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iii
This new edition retains in-depth discussion of famous cases, while providing
updated, detailed analysis of the issues those cases raise. Each chapter also focuses
on a key question that could be debated in class.
Unique to this text is a single, authorial voice integrating description of the cases
and their issues with historical overviews. The text is the only one that follows cases
over decades to tell readers what did and, often, what did not, happen. Written by
a professor who helped found bioethics and who has published in the field for 40
years, the text gives students a sense of mastery over this exciting, complex field.
After they have read the book, I hope that students will feel that they have learned
something important and that time studying the material has been well spent.
New to the 8th Edition
New research was added to each chapter, and a new list of topics to debate was
included on the inside cover of the book. Every chapter has been rewritten, tight-
ened, and augmented; issues have been clarified. Highlights of the new edition are
outlined here.
A NEW CHAPTER ON ALCOHOLISM (and addiction): Conflicting views on causes
of alcoholism: Alcoholics Anonymous, neuroscience, Kant, genetics, social sciences,
Fingarette. Focus on the famous case of Ernie Crowfeather.
A MAJOR NEW CASE: The Bucharest Early Intervention Project: Is it the Tuskegee
Study of neuroscience? Research on vulnerable human populations?
A MAJOR NEW SECTON on research on people with schizophrenia, including
cases of patients harmed by such research.
Discussion of Ebola and Zika virus in AIDS chapter: How it has resembled our
responses to AIDS?
Discussion on CRISPR, the revolutionary method of changing genes that almost
any geneticist can use to change a species and its progeny.
Update on the Patient Protection and Affordable Care Act: Why it’s working
and what are its latest problems?
Preface
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iv Preface
Death and Dying: The case of Brittany Maynard; the case of Jahi McMath.
Comas: Update on cases of Terri Schiavo, Belgian coma patient Rom Houben,
and minimally conscious states.
Abortion: Updates on death of Kenneth Edelin, declining numbers of abortion
in America. New topics: Telemedicine and early-stage self-abortions, the Planned
Parenthood video controversy, US Supreme Court decision limiting TRAP (Tar-
geted Regulation of Abortion Providers) laws.
Assisted Reproduction: Updates on the Gosselins, McCaughey septuplets, IVF
clinics, mistaken swaps of embryos, outsourced surrogates, and foreigners using
American surrogates; a sperm donor meets eight of his children, right-to-life
groups file in court to protect frozen embryos; state surrogacy laws, Snowflake
(embryo adoption and its high costs), brighter chances for infertile women aged
30–40 of having IVF baby on late tries.
Stem Cells, Cloning, and Embyros: Updates on stem cells, battles over embryos
among divorced couples and right-to-life friends, mitochondria-swapping to
cure genetic disease (“a child with three parents”); hucksterism in selling stem-
cell therapies; continuing problems in cloning primates.
Impaired Babies and Americans with Disabilities Act: Update on “Baby Jane Doe”
Keri-Lynn, Marlise Munoz case; UAB’s controversial SUPPORT study on
preemies, relevance to babies born with microcephaly from Zika virus.
Ethics of Research on Animals: Updates on the Great Ape Project, Edward Taub’s
work, legal protection for chimpanzees in research.
Transplants and Organ Allocation: Updates on numbers, costs, and outcomes,
especially for tracking bad outcomes of adult organ donors.
Genetics chapter: The pitfalls and promises of: personalized genetic testing and
Big Data, CRISPR, and testing for diseases with no treatments.
Chapter on Enhancement: New emphasis on relation of enhancements to people
with disabilities.
If you have suggestions for improvement, please email me at: pence@uab.edu.
pen07945_fm_i_xxii.indd 4 09/12/16 8:52 PM
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vii
Gregory E. Pence is professor and chair of the Department of Philosophy at the
University of Alabama at Birmingham. Between 1977 and 2011, he taught medical
ethics at the University of Alabama Medical School. He still directs its Early Medi-
cal School Acceptance Program.
In 2006, and for achievement in medical ethics, Samford University awarded
him a Pellegrino Medal. He testified about human cloning before committees of the
U.S. Congress in 2001 and the California Senate in 2003.
He graduated cum laude in Philosophy with a B.A. from the College of William and
Mary in 1970 and earned a Ph.D. from New York University in 1974, working mainly
under the visiting professor, Peter Singer.
In 2010, his UAB team was national champion of the Intercollegiate Ethics Bowl.
His teams won national championships of the Bioethics Bowl at Duke University in 2011
and Florida State University in 2015. At UAB, he has won both the Ingalls and President’s
Awards for excellence in teaching.
• He has written six trade books, including Who’s Afraid of Human Cloning?
(1998), Re-Creating Medicine: Ethical Issues at the Frontiers of Medicine (2000),
Designer Food: Mutant Harvest or Breadbasket of the World? (2002), Cloning
after Dolly: Who’s Still Afraid? (2004), How to Build a Better Human: An Eth-
ical Blueprint (2012), and What We Talk about When We Talk about Clone
Club: Bioethics and Philosophy in Orphan Black (2016).
• He has edited four books of general essays, Classic Works in Medical Ethics
(1995), Flesh of My Flesh: The Ethics of Cloning Humans (1998), The Ethics of
Food: A Reader for the Twenty-First Century (2002), and Brave New Bioethics
(2004).
• He has published over 60 op-ed essays in national publications: two each
in the New York Times, Los Angeles Times, Newsweek, and Chronicle of Higher
Education; one each in the Los Angeles Times, Atlanta Journal-Constitution,
and Philadelphia Inquirer; and 35 in the Sunday Birmingham News. His reader,
Brave New Bioethics, collects these essays from 1974 to 2002.
• A full list of books by Gregory Pence is available through Connect.
About the Author
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viii
Several people helped in preparing the 8th edition of this text.
Users of this text also improved the new edition with their suggestions and
corrections. In particular, Charles Cardwell, Pellissippi State Community College in
Tennessee, and Jason Gray, who taught bioethics at UAB for two years, spotted
many errors and made many helpful suggestions, as did my colleagues Josh May
and Matt King. My research assistant Karan Jani wrote helpful summaries of the
Bucharest Early Intervention Project and CRISPR. Lillian Chien provided amazing
proofing at the last stage.
The ansrsource developmental editing, lead by Anne Sheroff and Reshmi
Rajeesh were the perfect editors and helped me take this text to a higher level. I
also appreciate the following reviewers for the eighth edition:
Brendan Shea, Rochester Community and Technical College, Minnesota
Sarah Schrader, University of California, Santa Cruz, California
Acknowledgments
pen07945_fm_i_xxii.indd 8 09/12/16 8:52 PM
ix
Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 1
Chapter 2 Requests to Die: Terminal and Nonterminal Patients 19
Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 57
Chapter 4 Abortion: The Trial of Kenneth Edelin 84
Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly
Parents 109
Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 132
Chapter 7 Impaired Babies and the Americans with Disabilities Act 157
Chapter 8 Medical Research on Animals 179
Chapter 9 Medical Research on Vulnerable Populations 196
Chapter 10 Ethical Issues in First-Time Organ Surgeries 221
Chapter 11 The God Committee 243
Chapter 12 Using One Baby for Another 264
Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender
Persons 284
Chapter 14 Involuntary Psychiatric Commitment and Research on People with
Schizophrenia 299
Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy
Wexler, Angelina Jolie, Diabetes and Alzheimer’s 325
Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases:
AIDS, Ebola, and Zika 346
Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 367
Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with
Disabilities) 392
Chapter 19 Ethical Issues in Treating Alcoholism 405
Brief Contents
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x
PREFACE iii
1. Good and Bad Ethical Reasoning; Moral Theories and Principles 1
Good Reasoning in Bioethics 1
Giving Reasons 1
Universalization 2
Impartiality 3
Reasonableness 3
Civility 4
Mistakes in Ethical Reasoning 4
Slippery Slope 4
Ad Hominem (“To the Man”) 5
Tu Quoque (Pronounced “Tew-kwoh-kway”) 5
Straw Man/Red Herring 5
Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because of This”) 6
Appeal to Authority 6
Appeals to Feelings and Upbringing 7
Ad Populum 7
False Dichotomy (“Either-Or” Fallacy) 7
Equivocation 7
Begging the Question 8
Ethical Theories, Principles, and Bioethics 8
Moral Relativism 8
Utilitarianism 9
Problems of Utilitarianism 10
Kantian Ethics 11
Problems of Kantian Ethics 12
The Ethics of Care 12
Virtue Ethics 13
Natural Law 13
Contents
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Contents xi
Theories of Justice 15
Libertarianism 15
Rawls’s Theory of Justice 15
Marxism 16
Four Principles of Bioethics 16
Final Comment 18
Discussion Questions 18
Notes 18
2. Requests to Die: Terminal and Nonterminal Patients 19
The Case of Elizabeth Bouvia (1983–Present) 19
The Legal Battle: Refusing Sustenance 20
The Case of Larry McAfee (1985–1995) 24
The Case of Brittany Maynard (2013–2014) 26
Background: Perspectives on Dying Well 27
Greece and Rome 27
The Bible and Religious Views 28
Philosophers on Voluntary Death 28
The Nazis and “Euthanasia” 30
Hospice and Palliative Care 32
Dying in Holland 32
Jack Kevorkian 33
Dr. Anna Pou 34
Recent Legal Decisions 37
Oregon, 1994 37
Ancient Greece and the Hippocratic Oath 38
Ethical Issues 39
The Concept of Assisted Suicide 39
Misconceptions about Suicide 39
Rationality and Competence 40
Autonomy 41
Inadequate Resources and Poor Treatment 42
Social Prejudice and Physical Disabilities 43
Is Killing Always Wrong? 45
Killing versus Letting Die 46
Relief of Suffering 47
Slippery Slopes 48
Physicians’ Roles, Cries for Help, and Compassion 50
Mistakes and Abuses 50
Cries for Help 51
Further Reading and Resources 51
Discussion Questions 52
Notes 52
3. Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 57
The Quinlan Case 57
Pulling the Plug or Weaning from a Ventilator? 60
Substituted Judgment and Kinds of Cases 61
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xii Contents
The Cruzan Case 61
The Terri Schiavo Case 64
Enter Lawyers and Politicians 65
What Schiavo’s Autopsy Showed 68
Ethical Issues 69
Standards of Brain Death 69
Chances of Regaining Consciousness from Coma and PVS 70
Terri’s Chances of Re-awakening 72
Compassion and Its Interpretation 73
Religious Issues 74
Nagging Questions 74
Disability Issues 75
Some Distinctions 75
Advance Directives 77
The Schiavo Case, Bioethics and Politics 78
Further Reading and Resources 78
Discussion Questions 79
Notes 80
4. Abortion: The Trial of Kenneth Edelin 84
Kenneth Edelin’s Controversial Abortion 84
Background: Perspectives on Abortion 88
The Language of Abortion 88
Abortion and the Bible 88
The Experience of Illegal Abortions 90
1962: Sherri Finkbine 90
1968: Humanae Vitae 91
1973: Roe v. Wade 91
Abortion Statistics 92
Ethical Issues 92
Edelin’s Actions 92
Personhood 92
Personhood as a Gradient 93
The Deprivation Argument: Marquis and Quinn on Potentiality 94
Viability 95
The Argument from Marginal Cases 96
Thomson: A Limited Pro-Choice View 96
Feminist Views 97
Genetic Defects 97
God Must Want Me to Be Pregnant, or Else I Wouldn’t Be 98
A Culture of Life or a Culture of Death? 98
Abortion and Gender Selection 99
Abortion as a Three-Sided Issue 99
Antiabortion Protests and Violence 100
Live Birth Abortions and How Abortions Are Done 100
Fetal Tissue Research 101
Emergency Contraception 101
Maternal versus Fetal Rights 102
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Contents xiii
Viability 103
The Supreme Court Fine-Tunes Roe v. Wade 103
Partial Birth Abortions 104
States Restrict Abortion Clinics 104
Self-Administered Abortion by Telemedicine 105
Further Reading 106
Discussion Questions 106
Notes 106
5. Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly
Parents 109
The Octomom and the Gosselins 109
Louise Brown, the First Test Tube Baby 110
Harm to Research from Alarmist Media 112
Later Developments in Assisted Reproduction 112
Sperm and Egg Transfer 113
Freezing Gamete Material 114
Ethical Issues 115
Payment for Assisted Reproduction: Egg Donors 115
Payment for Assisted Reproduction: Adoption 115
Paid Surrogacy: The Baby M and Jaycee Cases 116
Multiple Births: Before the Octomom and Gosselins 117
Older Parents 118
Gender Selection 119
Unnatural 119
Physical Harm to Babies Created in New Ways 121
Psychological Harm to Babies Created in New Ways 122
Paradoxes about Harm and Reproduction 122
Wronging versus Harming 123
Harm by Not Knowing One’s Biological Parents? 124
Is Commercialization of Assisted Reproduction Wrong? 124
Screening for Genetic Disease: A New Eugenics? 125
Designer Babies? 126
Assisted Reproduction Worldwide 126
Time to Regulate Fertility Clinics? 127
Conclusion 128
Further Reading 128
Discussion Questions 128
Notes 129
6. Embryos, Stem Cells, and Reproductive Cloning 132
Background on Embryonic Research, Cloning, and Stem Cells 132
Ethical Issues about Reproductive Cloning 140
Valuable from Conception 140
Potential for Personhood 140
Slippery Slopes 141
Reductio ad Absurdum 141
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xiv Contents
The Interest View 142
Embryos and Respect 142
The Opportunity Cost of Missed Research 143
My Tissue 144
Moot? 144
Reproductive Cloning 144
Reproductive Cloning: Myths about Cloned Persons 144
Against the Will of God? 145
The Right to a Unique Genetic Identity 145
Unnatural and Perverse 146
The Right to an Open Future 146
Problems with Primate Cloning 147
The Spindle Problem 148
Inequality 149
Good of the Child 150
Only Way to Have One’s Own Baby 151
Stronger Genetic Connection 152
Liberty 152
A Rawlsian Argument for Cloning and Choice 153
Links between Embryonic and Reproductive Cloning 153
Further Readings 154
Discussion Questions 154
Notes 154
7. Impaired Babies and the Americans with Disabilities Act 157
1971: The Johns Hopkins Cases 157
1970s: Pediatric Intensivists Go Public 158
Ancient History 159
1981: The Mueller Case: Conjoined Twins 159
1982: The Infant Doe Case 160
1982–1986: The Baby Doe Rules 161
1983–1984: The Baby Jane Doe Case 162
1983–1986: Baby Jane’s Case in the Courts 163
Follow-up on Baby Jane Doe 164
Media Ethics and Bias 165
Ethical Issues 166
Selfishness 166
Personal versus Public Cases 167
Abortion versus Infanticide 168
Killing versus Letting Die with Newborns 169
Personhood of Impaired Neonates 169
Kinds of Euthanasia 170
Degrees of Defect 170
Wrongful Birth versus Wrongful Life 171
1984: Legislation 172
1992: The Americans with Disabilities Act (ADA) 173
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Contents xv
The Strength of Disability Advocates 174
Conceptual Dilemma: Supporting Both Choice and Respect 174
UAB’s Support Study on Premies 175
Further Reading 175
Discussion Questions 176
Notes 176
8. Medical Research on Animals 179
The Animal Research Front and Gennarelli’s Research 179
Evaluating the Philadelphia Study 181
PETA and Edward Taub’s Research on Monkeys 181
The Law and Animal Research 183
Numbers and Kinds of Animals in Research 184
Descartes on Animal Pain 184
C. S. Lewis on Animal Pain 185
Philosophy of Mind and Ethics 186
Peter Singer on Speciesism 186
Tom Regan on Animal Rights 188
Why We Need Animals in Research: The Official View 189
Critiquing the Official View 190
Chimpanzees and Research 192
Further Reading 192
Discussion Questions 193
Notes 193
9. Medical Research on Vulnerable Populations 196
Infamous Medical Experiments 196
William Beaumont 196
Nazi Medical Research 196
Josef Mengele 197
The Nuremberg Code 198
Questionable American Research 198
The Tuskegee Study (or “Study”) 200
Nature and History of Syphilis 200
The Racial Environment 201
Development of the Tuskegee Study 202
Ethical Issues in the Tuskegee Study 205
Informed Consent and Deception 205
Racism 206
Media Coverage 206
Harm to Subjects 207
Effects on Subjects’ Families 208
Kant and Motives of Researchers 208
Other Studies Like the Tuskegee Study 209
HIV Prevention in Africa: Another Tuskegee Study? 209
The Krieger Lead Paint Study 210
1946–1948: The Guatemalan Syphilis Study 211
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xvi Contents
Financial Conflicts and Twenty-First-Century Research 212
Toward International Standards of Research Ethics 213
The Collaborative Model 214
The Death of Jesse Gelsinger 215
The Bucharest Early Intervention Project (BEIP) 216
Further Reading 217
Discussion Questions 217
Notes 217
10. Ethical Issues in First-Time Organ Surgeries 221
The First Heart Transplant 221
Fame Cometh 224
The Post-Transplant Era: “Surgery Went Nuts” 224
Barney Clark’s Artificial Heart 225
The Implant 226
Post-Clark Implants 228
Limb and Face Transplants 229
Ethical Issues in First-Time Surgeries 232
The Desire to Be First and Famous 232
Concerns about Criteria of Death 234
Quality of Life 235
Defending Surgery 236
Cosmetic versus Therapeutic Surgery 237
Expensive Rescue versus Cheap Prevention 237
Real Informed Consent? 238
Conclusion 239
Further Reading 239
Discussion Questions 239
Notes 240
11. The God Committee 243
The God Committee and Artificial Kidneys 243
Shana Alexander Publicizes the God Committee; Starts Bioethics 245
The End Stage Renal Disease Act (ESRDA) 246
The Birth of Bioethics 247
Supply and Demand of Donated Organs 247
Ethical Issues in Allocating Scarce Medical Resources 248
Social Worth 248
Personal Responsibility for Illness and Expensive Resources 248
Kant and Rescher on Just Allocation 249
Wealth, Celebrities, Justice, and Waiting Lists for Organs 250
Retransplants 252
The Rule of Rescue 253
Sickest First, UNOS, and the Rule of Rescue 254
Living Donors 255
Costs and the Medical Commons 257
pen07945_fm_i_xxii.indd 16 09/12/16 8:52 PM
Contents xvii
Non-Heart-Beating Organ Transplantation 257
The God Committee, Again 260
Further Reading 261
Discussion Questions 261
Notes 262
12. Using One Baby for Another 264
1984: Baby Fae 264
1987: Baby Gabriel and Baby Holc 266
1992: Baby Theresa 268
1993: The Lakeberg Case: Separating Conjoined Twins 269
Ethical Issues 270
Use of Animals as Resources for Humans 270
Alternative Treatments? 271
Babies as Subjects of Research 272
Informed Consent 273
The Media 274
Therapy or Research? 275
Ethics and Terminology: Infants as “Donors” 277
Anencephalics and Brain Death 278
Saving Other Children 280
Costs and Opportunity Costs 280
Conclusion 280
Further Reading 281
Discussion Questions 281
Notes 281
13. Ethical Issues in the Treatment of Intersex and Transgender Persons 284
David Reimer 284
Intersex People 287
Congenital Adrenal Hyperplasia 288
Fetal Dex 289
Ethical Issues 290
What Is Normal and Who Defines It? 290
Secrecy in the Child’s Best Interest 290
Ending the Shame and Secrecy 291
Transgender/Intersex and Civil Rights 292
Nature or Nurture, or Both? 292
An Alternative, Conservative View 293
Ken Kipnis’s Proposals 293
Medical Exceptions 294
The Dutch Approach: Delaying Puberty 294
Conclusion 295
Further Reading 295
Discussion Questions 295
Notes 296
pen07945_fm_i_xxii.indd 17 09/12/16 8:52 PM
xviii Contents
14. Involuntary Psychiatric Commitment and Research on People with
Schizophrenia 299
The Case of Joyce Brown 299
The Legal Conflict 300
Ideology and Insanity 303
Patients’ Rights 303
Legal Victories for Psychiatric Patients 305
Deinstitutionalization 306
Violence and the Mentally Ill Homeless in the Cities 307
Ethical Issues 308
Paternalism, Autonomy, and Diminished Competence 308
Homelessness and Commitment 308
Psychiatry and Commitment 309
Suffering and Commitment: Benefit and Harm 310
Housing for the Mentally Ill as an Ethical Issue 311
Mass Shootings and the Mentally Ill 312
Ethical Issues in Research on People with Schizophrenia 312
Washout Period 312
Schizophrenia 313
Problems of Consent in Schizophrenia Research 315
Family Dilemmas 316
Drug Companies and Research on Schizophrenia 317
Researchers Defend Themselves 318
Harm to Subjects and the Kantian Ideal of Patient Care 319
Structural Critiques of Modern Psychiatric Research 319
The CATIE Study 320
Further Reading 321
Discussion Questions 321
Notes 322
15. Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy
Wexler, Angelina Jolie, Diabetes and Alzheimer’s 325
Case 1: Angelina Jolie and Genetic Testing for Cancer 325
Background: Basic Genetics 326
Case 2: Nancy Wexler and Huntington’s Disease 326
The Eugenics Movement 328
Case 3: Testing for Diabetes 329
Case 4: Testing for Alzheimer’s Disease 330
Ethical Issues 331
Preventing Disease 331
Testing as Self-Interest 332
Testing Only to Hear Good News 333
Testing as a Duty to One’s Family 334
Testing One’s Family by Testing Oneself 335
Personal Responsibility for Disease 335
Testing and Sick Identities 336
pen07945_fm_i_xxii.indd 18 09/12/16 8:52 PM
Contents xix
Preventing Suicide by Not Knowing 337
Testing Only with Good Counseling 338
Genetic Testing and Insurance 338
Premature Announcements and Oversimplifications 339
Caveat Emptor: Making Money from Genetic Testing 339
Preventing Genetic Disease 340
Embryos, Genetics, and CRISPR 342
Further Reading 342
Discussion Questions 343
Notes 343
16. Ethical Issues in Stopping the Global Spread of Infectious Diseases:
AIDS, Ebola, and Zika 346
Background: Epidemics, Plagues, and AIDS 346
A Brief History of AIDS 347
AIDS and Ideology 348
Transmission of HIV and Testing for HIV 350
Kimberly Bergalis’s Case 351
Two Ethical Issues in Stopping the Spread of AIDS 352
Homosexuality 352
HIV Exceptionalism 353
Stopping the Worldwide Spread Of HIV: Four Views 353
Educational Prevention 355
Feminism 355
Triage 357
Structuralism 357
Replies and Rebuttals 358
Progress 361
Ethical Issues in Preparing for Future Pandemics 362
Further Reading 363
Discussion Questions 364
Notes 364
17. Ethical Issues of the Patient Protection and Affordable Care Act 367
Rosalyn Schwartz 367
Universal Medical Coverage 368
1962 to Present: Canada 368
The National Health Service in England 369
The American Medical System: 1962–2012 369
1965: Medicare Begins 370
1965: Medicaid Begins 370
1997: CHIP 371
Tricare and VA Hospitals 371
1985: COBRA 372
1986: EMTALA 372
1996: HIPAA 372
1962–2012: Coverage at Work through Private Plans 372
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xx Contents
Blue Cross/Blue Shield and Kinds of Ratings 373
Oregon, Vermont, and Massachusetts Cover Everyone 375
2010: The Patient Protection and Affordable Care Act 376
For and Against the ACA 377
Opposing the ACA #1: Illegal Immigrants 377
Favoring the ACA #1: Illegal Immigrants 378
Favoring the ACA #2: Greater Efficiency 378
Opposing the ACA #2: Federal Bureaucracy Is Inefficient 379
Favoring the ACA #3: Making Medicine Rational 380
Opposing the ACA #3: Government Cannot Make Medical Finance Rational 380
Opposing the ACA #4: Health Care Is Not a Right 381
Favoring the ACA #4: Minimal Health Care Is a Right 381
Opposing the ACA #5: Health Care Is Not a Right 383
Favoring the ACA #5: Costs Can Be Controlled 385
Opposing the ACA #6: Intergenerational Injustice 386
Favoring the ACA #6: No Intergenerational Injustice 387
Update: Six Years of the Patient Protection and Affordable Care Act 387
Further Reading 389
Discussion Questions 389
Notes 389
18. Ethical Issues in Medical Enhancement (and their effect on people with
Disabilities) 392
Famous Cases of Enhancement 392
Oscar Pistorius and his Cheetahs 392
Tess and Prozac 392
Cycling and Doping 393
Ritalin, Adderall, and ADHD 393
Personal Body Shaping and Surgery 393
Ethical Issues of Medical Enhancement 394
What Counts as an Enhancement? 394
Positional Advantage 394
An Arms Race 395
End Secrecy; Legalize Enhancements 395
Inauthentic 396
Cheating 396
Not So Dangerous 398
Bad Effects of Legalization 400
The Role of Physicians 400
Disability and Enhancements 400
Conclusions 402
Further Reading 402
Discussion Questions 403
Notes 403
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Contents xxi
19. Ethical Issues in Treating Alcoholism 405
The Case of Ernie Crowfeather 405
Free Will 408
Is Alcoholism a Disease? 409
Sociologists on Alcoholism 410
Neuroscience on Alcoholism and Addiction 411
Geneticists on Alcoholism 412
Kant on Human Dignity, Free Will, and Alcoholism 413
Kant’s Critique of the Disease Model 414
Fingarette’s Research 416
Harm Reduction versus Moralism in Medicine 417
Compromises 418
Conclusion 419
Discussion questions 420
Further Reading 420
Notes 420
NAME INDEX I-1
SUBJECT INDEX I-5
BIOETHICS BOWL DEBATE TOPICS B-1
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GOOD REASONING IN BIOETHICS
Giving Reasons
It is important to give good reasons for a position in ethics. More globally, giving
reasons partly explains what it means to justify a position in ethics. Justification is
a complex affair, but it is more than saying “I feel this” or “I was raised that way”
or “Most people think so.”
First, the reason given must be relevant to the position. For example, in discuss-
ing whether humans should be created by cloning, Smith might argue that origi-
nating people this way would not create zombies but just create delayed, identical
twins. In arguing this way, Smith did two things: first, attacked a relevant miscon-
ception about human cloning, and, second, offered an insight, comparing creation
by cloning to the process that occurs when human embryos twin. In this second
comment, Smith is saying that cloning is really not unnatural. Allegedly people
think that the unnaturalness of cloning is a good reason to object to it.
Besides relevance, good reasons often provide evidence for a position. Suppose
Martha favors in vitro fertilization (IVF) and someone objects that IVF produces
defective babies. Martha then replies that the rate of gene-linked defects in IVF
babies is only a bit higher than for all babies. (Chapter 5 discusses this claim.) That
fact is good evidence, and hence a good reason.
In arguing about abortion, an antiabortionist might claim as a premise that a
12-week-old embryo feels pain, and therefore, aborting such an embryo is wrong.
Then someone who is pro-choice might counter that the neural system is undevel-
oped at 12 weeks, so no one who can feel pain exists. The antiabortionist counters
that “pain is pain,” whether the being is a shrimp, rat, or human embryo. At this
point, claims will continue to be exchanged back-and-forth, but notice that all these
claims are evidence for and against the premise that the embryo feels pain at
12 weeks and so constitute good reasons.
C H A P T E R 1
Good and Bad Ethical
Reasoning; Moral Theories
and Principles
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2 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
Ideally, good reasons support a conclusion as an argument, that is, not a dispute
but a justified conclusion. Sometimes in an argument, a key premise is missing or
assumed, but it needs to be made explicit. This missing premise is called an
enthymeme. In the preceding argument, this premise is, “We should not cause pain
to embryos.” Without this premise, the argument doesn’t work.
Logic is the study of the formal properties of arguments. It distinguishes between
truth and falsehood, which govern how premises correspond or not to the world,
and validity, which concerns the formal relations between premises and conclusion.
In logic, an argument with true premises and a valid structure is called sound.
Another kind of good reason in bioethics appeals not to evidence but to a
principle. In the case where not everyone can get a scarce lifesaving machine, ques-
tions arise about how to choose who is saved. In 1962, distributing dialysis machines
raised just such a problem. One proposal was that, “Everyone should have an equal
chance to get a machine,” and to effect this, some advocated a lottery to select
recipients. Here, the principle of equal consideration counted as a good reason.
Consider also the debate in bioethics as to whether an alcoholic should be given a
liver transplant, a practice that some critics believe wastes a good organ. (This is dis-
cussed in detail in Chapter 11.) A proponent of including alcoholics as recipients could
argue from the principle of equal consideration that everyone should be able to get a
new liver, so past behavior should not matter. An opponent might cite different princi-
ples such as, “Good organs should not be wasted” and “People must be held responsi-
ble for their bad behavior.” In debating whether alcoholics should get livers, these
principles function as good reasons for and against the inclusion of alcoholics.
Finally, good reasons should not contradict each other but should be logically
consistent. For example, if someone favors not making human cloning illegal by
federal law, he might argue that it is not the business of federal government to tell
citizens how to produce new humans. He might cite Aldous Huxley’s novel Brave
New World as an example of what could go wrong when government controls repro-
duction. To be consistent, he should favor keeping government out of all human
reproductive decisions, including those about assisted reproduction, birth control,
abortion, adoption, and whether to have children.
Consistency in ethics also entails not making exceptions for one’s own case.
For example, with brain death and organ transplants, one would not endorse bend-
ing the traditional criteria of brain death to generate more organs unless one would
be willing to oneself be declared brain-dead by bending these rules. Or more com-
monly, we cannot consistently urge, “Everyone should volunteer to help the sick
and needy, but I don’t have the time to do so.”
Universalization
Most of us have been ethically challenged at some point in our lives by someone
who asked us, “What if everyone did that?” Such a challenge assumes that the rules
of ethics must be for everyone.
The idea of universalization often comes up in moral decisions. In bioethics, a
controversy exists as to whether normal people with two kidneys should be encour-
aged to altruistically donate one so that someone on lifelong dialysis could receive
a kidney and live a normal life. Here the question, “What if everyone did that?”
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 3
has a good answer: Because most people will need only one kidney for their life, if
everyone agreed to donate a kidney (if they matched, were in good health, etc.),
then all kinds of good things would occur. In short, the practice seems morally
justified. Another way of putting this is that good reasons exist for altruistic dona-
tion of kidneys.
The twentieth-century ethicist R. M. Hare states this idea about universalization
nicely:
Universalizability means that, by saying “I ought,” he commits himself to agreeing
that anybody ought who is in just those circumstances. If I say “I ought, but there
is someone else in exactly the same circumstances, doing it to someone who is just
like the person I should be doing it to, but he ought not to do it,” then logically
eyebrows will be raised; it is logically inconsistent to say, of two exactly similar peo-
ple in exactly similar situations, that the first ought to do something and the second
ought not.1
Impartiality
One of the most important ideas in ethics is that we should not make special rules
for our own case, in other words, that we should not be partial to our own interests.
Similarly, we should not be partial to those in our own gender, ethnicity, or age
group. Instead we should be impartial, treating everyone the same.
Just how impartial we should be is an important question in ethical theory. Is it
permissible to put the boundary of impartiality at our national borders, or should
ethics be universal? For example, in research bioethics, should there be one standard
for informed consent in developed countries and another in developing countries?
Over time, the tendency in ethics has been to widen the scope of impartiality.
Thus in research bioethics today, there has been a movement to not have a double
standard for developed and developing countries but to treat both the same. (This
is discussed in Chapter 9.)
One important idea here in reasoning concerns onus of proof. Suppose someone
wants to apply a rule only to his own group, say, by arguing that cancer specialists,
to encourage hope, should not always tell patients the truth about their diagnosis.
Because it is now a norm in medicine to tell the truth and because most people
want to know the truth, the “onus” or burden of truth for nondisclosure should be
on cancer specialists. What this means is that this specialist needs especially good
reasons for his actions and if he cannot present such good reasons, his position is
unjustified.
Reasonableness
It is hard to exactly characterize what is meant by being reasonable in ethics, but
it is certainly composed of being open to other points of view. It is unlikely that
the way any of us was raised—in, say, a Southern culture as a Baptist—is the only
path to the truth about the universe. People raised in Jewish, Hindu, or Muslim
cultures might also have insights into the universe, as might people raised in non-
religious, secular households. Being open to other viewpoints is good for everyone,
at least for people who share an interest in truth.
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4 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
The same holds for other viewpoints on positions in bioethics. Most of us bring
to these issues a general orientation that predisposes us to a certain position. For
example, we might come from a culture that frowns on drinking alcohol and thus
condemns rewarding alcoholics with liver transplants. But it is important to con-
sider other points of view, for example, the theory that alcoholism is a disease over
which drinkers have no control. If that theory is correct, then alcoholics should be
blamed no more than people who get endocarditis from a virus.
Another quality of reasonableness is being fair-minded. This quality of intellec-
tual life differs from being open-minded because it goes further and includes a
willingness to try to see the best in the reasoning of other people. The opposite of
this is the fallacy of attacking a straw man, where the attacker is not fair, that is, does
not attack the best version of his opponent’s argument but instead attacks a weak
“straw man” who is easy to knock down.
Being unfair tends to generate hostility rather than goodwill. Being fair-minded
includes a willingness to admit problems with one’s own position, to admit good objec-
tions to it, and to admit that—given enough good reasons—one could even change one’s
mind. Most important, being fair-minded in discussing issues means trying to consider
the best argument on the opposing side. Sometimes this can be expressed by the trial
balloon, “If I understand what you are saying, you mean that . . . .” Such a tactic gives
the opponent a chance to refine or modulate his or her position and engenders a spirit
of mutual work toward discovering the best answer.
Civility
In the United States in the past decades, a tone of incivility has permeated debates
in public policy, including those in bioethics. This is unfortunate. Because of ada-
mant divisions between political parties, between social conservatives and social
liberals, and between liberal and conservative bioethicists, the tone of debate has
sometimes descended to scoring cheap points, to demagoguery, to painting one’s
opponents as spawn of the Devil, and, in general, to being nasty.
Being civil in discussions in bioethics improves everyone. Being uncivil
degrades us all, both in class, as citizens, and as future professionals. This is
juvenile, unprofessional behavior, and it is sad to see so many talk shows on
cable television promoting it (seeing people argue badly seems to promote good
ratings). It is important to realize that one can argue fairly and rationally without
being mean and without attacking opponents personally. Some of the fallacies
described in the following section involve cheap tricks in such mean-spirited
attacks.
MISTAKES IN ETHICAL REASONING
Slippery Slope
Often in bioethics, champions of the status quo argue that a small change in a
current medical practice will lead to terrible results. Although the small change
itself is not so bad, because there is no logical place to draw the line or because
something horrible is unleashed in human nature, soon bad things will occur. This
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 5
is basically the idea of the slippery slope, which is one of the most famous ideas
in ethics. It is also called the “thin edge of the wedge”—or simply the “wedge”—
argument. Claims about it in bioethics figure prominently in debates about
physician-assisted dying, cloning, abortion, standards of brain death, and assisted
reproduction.
Slippery slope arguments metaphorically see society as teetering like a ball
perched atop a steep, greased slope and leaning downward, braced only by wedges
on the ground, preventing it from descending. Our basic moral principles are the
wedges.
For example, someone might invoke the slippery slope by claiming, “If we do
not ban students taking the MCAT from using Adderall or Ritalin, soon there will
be an arms race of mental enhancements by test-takers.”
The counterargument to the slippery slope is multifaceted: First, we can make
a small change without going all the way down the slope. If we see that a change
in a medical practice is bad, we can undo it. Second, not all change is bad; how
else would progress occur? Finally, one person’s “slope” is another’s “ascent.” Inte-
gration and equal voting rights may have seemed like the pit to white male suprem-
acists but not to everyone else.
Ad Hominem (“To the Man”)
Generally, it’s a mistake to make a personal attack on someone else, in part because
you may not know an opponent well. Suppose Gina argues for the moral superior-
ity of suicide for terminally ill patients because it gives patients control over their
lives, because it is justified by the principle of autonomy, and because, after all, “it’s
the patient’s body, not the doctor’s.” Her reasons are not affected by whether she
is terminally ill. An ad hominem fallacy would be committed if someone said, “I’ll
bet you would change your mind if you were dying.” This puts the focus incorrectly
on her personal life and not on the reasons she gave for her position.
Tu Quoque (Pronounced “Tew-kwoh-kway”)
Literally, “You, too.” The mistaken idea here is that two wrongs make a right. First
pharmacist: “You made an exception last week and let a 12-year-old girl buy emer-
gency contraception when the law says she must be 14.” Second pharmacist: “You
made a similar exception for your 13-year-old niece.”
“You, too!” resonates in ethics because when someone confronts us with wrong-
doing, we feel less ashamed if the other person has also done it. But saying some-
one else also acted wrongly doesn’t justify the first wrong.
Straw Man/Red Herring
This occurs when someone brings up irrelevant issues. The fallacy is committed
when someone focuses on a different issue than the one originally advocated,
because the different issue is easier to refute. Example: “We should reject Obamacare
because it will lead to death panels where people are forced to have advance direc-
tives before they know they are dying or know what their options are.”
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6 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
Getting universal coverage for medical care does not entail death panels,
but death panels sound scary and are easier to attack than universal medical
coverage.
It is also not fair-minded to attack a position that one’s opponent does not hold.
Doing so is destructive, not constructive, to rational debate in bioethics.
The red herring fallacy is a bit different from straw man and consists of dis-
tracting an opponent from the real argument by raising an irrelevant, but associ-
ated, issue. (In hunting with dogs, the red herring across the trail of the tracked
animal puts the dogs on the wrong path.) So in discussing abortion and whether a
fetus is a person, someone might object, “More African-Americans have abortions
as a percentage than white Americans.” Obviously, raising race as an issue is always
potentially controversial and, here, potentially distracting. The most important point
is that the statement bears no relevance on whether the fetus is a person. Both,
therefore, are fallacies of relevance.
Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because
of This”)
The mistake in reasoning here confuses temporal priority with causality. An exam-
ple: “In the 1960s, women started working outside the home, and a few years later,
rates of divorce soared. Therefore, if we want to preserve the family, we should
prevent women from working outside the home.”
Just because one event occurred before another does not mean the first caused
the second. Why? Because when you think about it, everything in history came
before X. Consider an example from the best-selling Freakonomics: “Abortion was
legalized in 1973, and 15 years later, the crime rates went down. So if you want to
lower rates of crime in the future, encourage abortions.”
The problem here is the supposed causal links between abortion and crime
rates. What might be true is that with more abortions in certain neighborhoods,
there were fewer people 15 years later or fewer people between ages 15 and 25 who
could commit crimes. But more birth control pills might have had the same effect.
Also, it may be that better education and counseling started at the same time and
made a big difference.
Appeal to Authority
Reasons and arguments justify a position, not just any authority. Moreover, when
an authority is cited, it must be relevant to the topic in question.
Harvard professor E. O. Wilson is probably the world’s foremost authority on
ants. When Wilson wrote Sociobiology, he claimed that, in certain aspects, organi-
zations of ants and humans resembled each other. Quoting Wilson about sociobi-
ology is not erroneous but appropriate.
On the other hand, Wilson may have opinions about rock bands, but quoting
these opinions is irrelevant to whether a band is good. Wilson’s authority on ants
is not relevant to rock bands.
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 7
Appeals to Feelings and Upbringing
How you feel about something or what you were brought up to believe doesn’t
count as a reason for it. Example: “I was brought up to believe that men were the
hunters and women were the hunted, so a woman should wait until a man finds
her and asks her out.”
Here is another example: “I was brought up to think being gay was repulsive,
so I’ve got to feel that way.” In this claim, we could substitute for “being gay” any
number of other qualities, such as religion, race, ethnicity, or looks.
Obviously, you can be brought up in the wrong way, and as a result, or for
other reasons, have irrational feelings as an adult. Again, reasons justify a position
in ethics, not feelings or upbringing.
Ad Populum
”Everybody does it.” Just because everyone does something does not justify it or
make it ethical. Most physicians may take free gifts from drug representatives who
push expensive, brand name drugs over generics, but that doesn’t mean it’s right
to take such gifts. The self-serving claim, “All the other physicians do it. Why
shouldn’t I take such gifts, too?” commits this fallacy.
False Dichotomy (“Either-Or” Fallacy)
This fallacy is a version of simplistic thinking. “Either you’re a liar or a completely
honest man.” The opponent presents an issue as if there are only two extreme,
opposed alternatives, with nothing in between—black, white, or gray. “Either we
ban cell phones, or people will use them while driving.” Consider also: “Either we’re
all nuts, or we’re all lucid.”
Another example: “Either God exists, or everything is permitted.” Counterar-
gument: Even if there’s no God, good people will still act virtuously. If there is a
God and people only act virtuously to please him, maybe they aren’t virtuous any-
way because only people who do the right thing because it is right are really virtuous.
Equivocation
We should be careful to define key terms and not let key words contain many
meanings. So we should clarify equivocal or ambiguous words with more than one
meaning. Example: “Sex offenders should only be allowed to live in certain areas,
so Alan Jones should not live here.”
But who is a “sex offender”? It turns out that as an 18-year-old Atlanta teenager,
Alan, had consenting sex with a girl who was one month shy of 18, so technically
he committed sodomy and was legally a sex offender in Georgia. But more com-
monly, the phrase is reserved for people who have nonconsensual sex with a minor
with a far greater age difference.
In bioethics, one of the most important terms is “person,” where this evaluative
term contrasts with “human” or mere biological membership in the human species.
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8 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
Some people consider eight-day-old human embryos to be persons, and hence,
intrauterine devices (IUDs), which prevent embryos from implanting, are instru-
ments of murder. Some people believe that victims of late-stage Alzheimer’s disease
are no longer persons, especially when they cannot recognize their children or
remember how to take a shower. On the expansionist side of personhood, some
bioethicists such as Peter Singer would include chimpanzees and great apes.
What is important in good reasoning is to define key terms such as “person.”
Sometimes, achieving clarity about such a definition is the major task at hand.
Certainly in bioethics, philosophers, bioethicists, and theologians have penned
untold volumes in trying to clarify the concept of personhood.
Begging the Question
Begging the question occurs when a conclusion that requires good reasons is
assumed without argument, so “begging” here means “assuming without proof.”
The end of the discussion in the previous section mentioned that Peter Singer
considers adult chimpanzees to be persons. Someone might retort, “No. Only
humans can be persons.” Singer would reply that such a stance begs the question
at hand, namely, whether only humans can be persons. That crucial point cannot
just be assumed at the start but must be backed up with good reasons. Indeed, that
is the whole purpose of justification here.
Question-begging mistakes are not always obvious because synonyms may dis-
guise the mistake. “I think everyone from the South is a racist.” Why? “Because
everyone who lives in states below the Mason-Dixon line is racist.” The person has
just said the same thing twice, both times assuming what should be argued for.
In bioethics and the abortion debate, an example of begging the question would
be if an antiabortionist began a debate by stating, “Abortion is murder.” This state-
ment begs at least two questions: that killing a fetus or embryo is the same as
killing a full person and that the kind of killing in abortion is, like murder, an
unjustified killing. (These claims are discussed in Chapter 4.)
ETHICAL THEORIES, PRINCIPLES, AND BIOETHICS
In this section, some classic ethical theories are surveyed with emphasis on
bioethics.
Moral Relativism
Moral relativism is the theory that no universal truths exist across cultures but
instead, what is right or wrong must be defined in each society. Inside a particular
culture, some things are right, others wrong, but nothing is wrong across all.
This theory, popular in anthropology, initially seems attractive when students
study various peoples around the world and different times in history. But it also
has flaws, and medicine is one place where such flaws can be exhibited.
Consider that medicine under the Nazi regime in Germany was anti-Semitic,
racist, and contemptuous of people with disabilities. As a result, physicians led the
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 9
movement to “cleanse” the Aryan race of undesirable, “useless eaters,” leading to
the Holocaust and deaths of 6 million people. As described in Chapter 9, Nazi
physicians also conducted horrible medical experiments on captives.
A moral relativist must accept the view that we cannot condemn Nazi physi-
cians for such actions. The trials at Nuremberg were a farce. Inside Nazi culture,
the Holocaust was not wrong but right. Only from an external, objective standard
of morality can such actions be condemned.
Utilitarianism
Utilitarianism was developed by philosopher-activists Jeremy Bentham and John
Stuart Mill in late-eighteenth-century England. It holds that right acts produce the
greatest amount of good for the greatest number of beings, which it called “utility.”
Its teachings can be summed up in four basic tenets:
1. Consequentialism. Consequences count, not motives or intentions.
2. Maximization. The number of beings affected by a consequence matters; the
more beings affected, the more important the result.
3. A theory of value (or of “good”). A definition of what counts as good
consequences.
4. A scope-of-morality premise. Each being’s happiness is to count as one unit of
happiness up to a certain boundary.
For utilitarians, right acts then contain four aspects, the greatest amount of good
consequences for the greatest number of beings of a certain kind.
One distinctive aspect of utilitarianism is that it is wholly secular and posits no
God or gods as the sources of morality. In this sense, it is naturalistic. In empha-
sizing consequences, it contrasts with deontology, such as Kantian ethics, which
emphasizes motives, and virtue ethics, which emphasizes traits of character.
Each of the four tenets can be controversial. In reverse order, consider tenet 4,
the scope of morality or who has “standing” in moral considerations. Bentham
emphasized that the meaning of tenet 4 was whether a being could suffer, not
whether it was human or animal. As such, many utilitarians include animals in their
calculations of the “greatest number.” This makes a big difference to research by
psychologists and physiologists on animals. If an ape is 90 percent a human in
interests and value and utilitarianism calculates utility this way, then very few exper-
iments on primates will be morally justified.
Some utilitarian thinkers such as Peter Singer take a large view of moral stand-
ing and hold that every being’s happiness on the planet matters, not just citizens
of America and not just humans. As such, they are more likely in bioethics to
emphasize what benefits the poor people of the world.
Virtue ethicists and Kantians (discussed later) regard a physician’s motives as
a sign of his character. The poor patient without medical coverage doesn’t care
whether the physician volunteering to treat him without payment is doing it from
a sense of duty or from guilt or to make others think him good. What matters is
that the physician is there for him. Utilitarians think motives count only insofar as
they tend to produce the greatest good.
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10 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
In medicine, does it matter whether a physician listens because she really cares
about patients or because she’s found that having satisfied patients is an effective
way to maximize income? A utilitarian might argue that if she is talented, whether
she really cares about her patients matters little; in either case, her behavior pro-
duces good consequences to real people. For a larger view, she may do more good
bringing clean water to a village than being a cameo medical missionary.
On the other hand, for virtue ethicists and Kantians, character and motives,
not results, are everything. Good people sometimes fail to achieve good results, but
if their motives are pure, they can’t be faulted for such failures. Do we really want
a physician who is faking compassion?
Utilitarianism also contains a theory of value (tenet 3), that is, a theory of
harmful and good consequences. Utilitarianism is associated with, but not the same
as, the harm reduction movement in medicine, which focuses not on changing
“immoral” behaviors such as IV-drug usage, prostitution, and gambling but on the
harmful results associated with them.
The most important claim of utilitarianism is that consequences matter in deter-
mining morality (tenet 1). Medicine can certainly live with that. When sick people
see a physician, they want results, not just good intentions. And even other ethical
theories, such as Kantian ethics and virtue theory, seem always to be indirectly
appealing to consequences in calculating right actions.
Problems of Utilitarianism
Maximization can be beneficial to utilitarianism, organizing it and giving it direc-
tion. If a surgeon can take a liver, a heart, skin, eyes, and bone marrow from a
brain-dead cadaver and give all to one patient or something to six, it is obvious that
it’s better to save six than one.
In the trolley problem, a runaway trolley careening down a steep hill will hit six
people unless bystander Jones flips a lever to switch it to the only side track, where
it will kill only one person. By flipping the switch, however, Jones does something
active, changing fate, but doing what maximization demands (in this case, maxi-
mizing utility by saving the most lives).
In medicine, maximization and utilitarianism are often applied in public health
ethics and situations of triage. Triage allocates scarce resources during emergencies
when not all will live. Because consequences count, utilitarian physicians should not
treat each patient equally but should focus on those who can be benefited. Rigorous
application of this principle gives utilitarianism its famous hard edge: Physicians
should abandon those who will die anyway and, just as ruthlessly, abandon those
who will live anyway. Physicians at the scene should help only those who waver
between life and death and for whom intervention can tilt the balance toward life.
The goal is always to save the maximal number of lives.
In these catastrophic situations, such as after a terrorist attack or tsunami, what
other theory could help? Similarly in medical research, such as that focused on cur-
ing cancer, researchers need to focus on the big picture, which is removing the
scourge of cancer from tens of millions of lives. Yes, individual cancer patients may
suffer in experimental trials of new drugs, but the goal is to help the huge numbers
of cancer victims of the future.
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 11
Maximization (tenet 2) can get utilitarians into trouble. Wouldn’t utilitarianism
be willing to violate the traditional sanctity-of-life principle to save many people?
Wouldn’t utilitarianism permit the sacrifice of an innocent, healthy person to trans-
fer his organs to four patients who needed them to live?2 Aren’t four people alive
better than one? If consequences and numbers define morality, what’s wrong with
doing so? Yet, it’s wrong to chop up a patient like this.
Kantian Ethics
Immanuel Kant (1724–1804) lived during the Enlightenment, and he believed in the
power of reason to solve human problems. The distinctive elements of Kantian
ethics are these:
1. Ethics is not a matter of consequences but of duty. Why an act is done is more
important than its results. Specifically, an act must be done from the right
motive, and the right motive is the desire to do one’s duty. Indeed, there is
only one correct motive in Kantian ethics and that is the desire to be a good
person, to do what is right, to have a “pure will.”
Kant’s ethics celebrates duty (and is therefore called deontological, from
deontos, duty), because it emphasizes not having the right desires or feelings
but acting from obligation. We should praise only medical acts done from duty,
not from compassion. For Kant, the correct motive for treating a patient well
is not because a physician feels like doing so but because it is the right thing
to do. When we act morally, Kant says, reason must tell feelings what to do,
not the other way around, as in popular culture.
Kant says the only thing valuable in the world is a good will, the trait of
character indicating a willingness to choose the right act, simply because it’s
right. But how do we know what is right? What is our duty? Kant gives two
formulations.
2. A right act has a maxim that is universalizable. An act is right if one can will its
maxim or rule to be acted on by all others. “Lying to get out of keeping a
promise” cannot be so willed because if everyone acted this way, promise-
keeping would mean nothing.
3. A right act always treats other humans as “ends-in-themselves,” never as a “mere
means.” To treat another person as an “end in himself” is to treat him as having
absolute, infinite moral worth, not relative worth. His welfare cannot be sacri-
ficed to the good of others or to one’s own desires. So parents cannot create
one child to help another, as with savior siblings.
Consider the nurse who discovers a physician failed to tell patient Ruth an
important fact years ago. Now it is too late for the truth to help Ruth. A consequen-
tialist might argue that the nurse should not tell because Ruth won’t benefit. But
for Kant, Ruth must be told the truth. The only universalizable rule is, “Always tell
patients the truth.” Such a rule is the basis of trust and of treating patients as “ends
in themselves.” If the nurse were the patient, she would want to know. The nurse
may feel that she shouldn’t reveal the truth but reason will reveal her real duty.
4. People are free only when they act rationally. Kant would agree that much of how
we act is governed by our emotions as well as our biology. But controversially,
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12 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
Kant denies that we act morally when we do the right thing because we are
accustomed to it, because it feels right, or because our society favors the act.
We act morally only when we understand why certain rules are right and then
freely choose to bind our actions to them. Kant calls the capacity to act this
way autonomy. For him, it gives humans higher worth and dignity than animals.
It follows for Kant that one should not treat one’s own person as a thing.
That means one cannot think of oneself as a mechanical machine, subject only
to the laws of chemistry and physics. So, people are more than their bodies.
Hence, for Kant, alcoholism is not a disease of a body but a pattern of free
choices.
Problems of Kantian Ethics
Kantian ethics has several problems. First, it fails to tell us how to resolve conflicts
between competing maxims. Because most cases in bioethics involve many compet-
ing interests of different people, there will be competing, universalizable maxims.
In the preceding case about failing to tell a patient the truth, one maxim is, “Always
tell the truth” but another is, “Be kind and don’t inflict useless pain.”
Second, the ideal of treating each person as if he has infinite value is not always
practical: It does not tell us how to deliberate about trade-offs when some humans
will die in triage situations. Nor does it make sense in medicine when spending
$5 million on one patient may mean spending little on the next 10 patients.
Third, some of Kant’s ideas appear out-of-date. Why shouldn’t Kantians accept
an altruistic kidney donation? Why isn’t everyone better-off under such a maxim,
and why isn’t such a choice evidence of our best, free, rational natures?
Nevertheless, Kant provides useful insights to medical ethics. He would favor
using a lottery to distribute a lifesaving but scarce new drug. His emphasis on
people as “ends in themselves” explains the outrage that people have felt when
learning of research done by Nazi physicians. Finally, Kantian autonomy explains
why informed consent grounds participation in medical experiments. Also, when
combined with the political autonomy of citizens of democracies, Kantian autonomy
sets the stage for modern medical ethics.
The Ethics of Care
During the 1980s, feminist psychologists and philosophers questioned whether tra-
ditional ethical theories were too male-oriented, too abstract, too intellectual, and
too false to the experience of women, who valued trust, cooperation, nurturing, and
bonding.
Carol Gilligan claimed that women analyze ethical dilemmas differently than
men. Subsequent feminist theorists, who created the often-called Ethics of Care
theory, explored family relationships by promoting “female” virtues of caring,
nurturing, trust, intimate friendship, and love. Rather than focusing on atomistic
individuals, the theory emphasized the family, which too often drops out of bioethical
analysis. Overall, the Ethics of Care may be a useful corrective to abstract, semi-
legalistic concepts, such as rights.
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 13
In criticism, the Ethics of Care does not tell us how to treat people we do not
know or, worse, people we do not care about. This is important because physicians
today often meet patients as strangers. Nor does it tell us how to resolve conflicts
among people we care about, such as when a physician is torn between checking
on a patient and being with his own daughter at childbirth.
Other feminists believe that only traditional gender roles make these virtues
female and that the Ethics of Care reinforces stereotypes. As one wit said, “The
ethics of care screams, ‘Mommy!’” It should also be emphasized that female bioeth-
icists often address concerns far beyond the family or their personal network of
caring, such as the plight of HIV-infected women around the world.
Virtue Ethics
In ancient Greek medicine, to know what made a good physician, we needed to
know the physician’s role. If that role was to heal the sick, then it required virtues
of compassion, knowledge of healing, and skill in human relations. Virtues, then,
were skills in performing a role well.
Socrates transcended role-defined ethics and asked about the virtues of a good
person. Ancient Greek philosophers believed that the four great human excellences
were human courage, temperance, wisdom, and justice, known as the cardinal
virtues.
So we should not only ask, “What virtues should a good physician possess?”
but also, “What virtues should a good person possess who happens to work as a
physician?”
Role-based ethics suffers problems when roles conflict or the wider society calls
into question whether the role has been properly defined. Greek virtues celebrated
Hellenistic culture, but this culture was blind to being built on slavery. Role-based
ethics still underlies the apprentice system in medical education, where medical
students gradually assume more responsibility.
Natural Law
When Rome conquered Greece, Greek culture in turn captured Rome. Rome’s Stoic
philosophers elevated one aspect of the Greek worldview to a higher level. Rules
for human beings, they argued, were so embedded in the texture of the world that
they were law for humans. These laws came to be known as “natural laws.” They
were apprehended by unaided reason, without Scripture or divine revelation.
The notion of a lawgiver lies behind natural law. In the eleventh century,
Thomas Aquinas synthesized Aristotelianism with Christian ideas to create his
Thomistic worldview. Aquinas then made explicit the connection between God and
natural laws: A rational God made the world work rationally and gave humans
reason to discover these laws. So, studying Thomistic ethics is a rational process of
discovering those rules. Correct descriptions of the world would yield correct pre-
scriptions about how to act. To act rationally is to act morally, which in turn is to
act in accordance with natural law.
These rules commanded humans to resist their feelings. St. Augustine taught
in the fourth century C.E. that sin contaminated human feeling: as such, lust, sloth,
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14 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
avarice, and pride infected humans. This was in stunning contrast to modern times;
for Aquinas, ethics was not about examining one’s feelings but about following the
natural rules laid down by God.
Natural law condemns homosexuality. Aquinas believed that God made two
sexes for procreation and that it was natural and rational for a man and woman to
mate to have children. On the other hand, for two people of the same gender
to have sex was contrary to natural law, and hence immoral.
One problem with natural law theory is that what is considered against natural
law may vary over the centuries. Many today do not consider homosexuality to be
unnatural, especially because it has been practiced since the beginning of human
history and because some great cultures, such as the ancient Greeks, celebrated it
as ideal.
For natural law theory, consider marriage and children. Natural law regards
loving, sexual relations between married man and wife as natural and good, and
the natural product of such sex is children. But many forms of assisted reproduction
today—IVF, egg transfer, surrogate mothers, and artificial insemination of donor
sperm—violate natural law because they don’t involve sex between husbands and
wives.
Natural law in bioethics tends to conflate “natural” with “primitive” or “tradi-
tional,” and hence, it has no way to accommodate change or progress, for example,
in helping infertile couples with assisted reproduction.
Natural law theory bequeathed to bioethics the famous doctrine of double effect.
This doctrine holds that if an action had two effects, one good and the other evil,
the evil effect was morally permitted (1) if the action was good in itself or not evil,
(2) if the good followed as immediately from the cause as did the evil effect, (3) if
only the good effect was intended, and (4) if there was as important a reason for
performing the action as for allowing the evil effect.
This doctrine justifies an exception to abortions with an ectopic pregnancy (an
embryo growing in a fallopian tube). This doctrine allows abortions only if the direct
intention was to save the life of the mother and if the other conditions listed are
followed.
This doctrine forbids physicians from assisting in executions, since it forbids an
intention to kill. On the other hand, it allows increasing dosages of morphine for
terminal patients, so long as the intention is to relieve suffering, not to kill the
patient. (This idea entered the case of Anna Pou, the New Orleans physician caught
by Hurricane Katrina—see Chapter 2).
The principle of totality also derives from natural law. It says that the human
body may be changed only to ensure the proper functioning of that body. The
underlying idea is that one’s body is not something that one owns but that one
holds in trust for God: “The body is the temple of the Lord.” So a gangrenous leg
may be amputated or a cancerous breast removed, because these diseases threaten
the body’s overall health.
According to this principle, we are given our bodies as they are for a reason
and we should not change our bodies for frivolous reasons. God wisely created
human bodies as they are, and humans shouldn’t meddle with these results.
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 15
THEORIES OF JUSTICE
Many theories of justice exist. Most divide into retributive (about punishment) and
distributive (about how to allocate benefits and burdens). Here, three main theories
of distributive justice are discussed.
Libertarianism
Libertarians favor government for defense and for limited public works, perhaps
not even including national parks or a public interstate road system (we could have
private toll roads). They disfavor government programs such as Medicare, Medicaid,
disability insurance, food stamps, and welfare. Libertarians oppose forced taxation
by the government, especially when it redistributes property and income from rich
to poor. They champion the property rights of the status quo but tend to be silent
about how those enjoying the status quo acquired their property. Harvard philoso-
pher Robert Nozick saw forced taxation as equivalent to forced labor.
Accordingly, Libertarians oppose mandatory FICA taxes on workers’ pay and
taxes for Medicare and for the Hospital Insurance Trust Fund. Even though federal
programs such as Medicare have made American physicians rich, Libertarian
physicians would rather have no government control over their business. In a
Libertarian society, physicians would be reimbursed only in cash.
Critics say that in such a system, fewer hospitals would be built, elderly patients
would frequently forgo procedures for lack of money, and physicians would earn
far less income. In such a system, physicians would be controlled by few federal
regulations.
Rawls’s Theory of Justice
John Rawls, a philosopher of the twentieth century, believed that moral constraints
should be imposed on the social contract. He called his most important constraint
“the veil of ignorance”—in the hypothetical social contract, no one should know his
or her age, gender, race, health, number of children, income, wealth, or other
arbitrary personal information. Rawlsian contractarianism assumes that people are
self-interested and choose the basic institutions of their society in a social contract;
it is Kantian in imposing impartiality or fairness on the choosers by ruling out
arbitrary information on them.
Rawls argues that the only rational way to choose under his veil of ignorance
is as if, when the veil lifts, one might be the least well-off person in society. Because
you don’t know anything personal under the veil, you don’t know what place in
society you will occupy. This justifies the choice of his famous difference principle:
Choosers should opt for institutions creating equality unless a difference favors the
least well-off group.
So everyone should be trained in medicine unless training only a few is better
for the least well-off. Mandating the difference principle imposes the Golden Rule
on the structure of society.
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16 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
Rawlsian justice entails that every citizen should have equal access to medical
care unless unequal access favors the poor. It reduces the inequalities of fate; hence,
children and those with genetic disease must get good medical care as a matter of
justice.
Advocates of free markets favor private medical insurance plans in which the
healthy do not subsidize the unhealthy. Rawlsians see “healthy” and “unhealthy”
as arbitrary distinctions, more due to genetics than individual merit. Libertarians
would allow for-profit companies to practice experience rating, whereby citizens
with preexisting illness may be excluded. Rawlsians favor community rating,
whereby risk and premium rates are spread over all members of a large community,
such as a state or nation.
Marxism
Although both more and less than a theory of justice, Marxism is still an important
tool for understanding the world and bioethics. Marx saw history as a struggle
between the owners of the means of production (the rich) and the workers (the
poor). He thought the rich got richer by not paying workers their true worth (which
he called the “labor theory of value”). Workers are exploited and create “surplus
value” (i.e., unjustified value) for owners.
In bioethics, Marx’s most important insight may be to always understand how
money influences decisions in medicine. Although how people get reimbursed is
certainly not the only issue that should be considered in bioethical analysis, it is
also naïve to ignore how people get paid. For example, most services of physicians
in assisted reproduction or enhancement medicine are not covered by traditional
insurance plans, so these kinds of medicine are advertised aggressively in far dif-
ferent ways than, say, cancer surgery.
Marxist analysis may be more important than ever today, when the gap between
income/wealth over the first years of the 2000s has grown considerably in North
America and Europe. Moreover, a whole generation of young people may lack the
upward economic mobility of past generations and be trapped into paying exorbi-
tant taxes for medical care for seniors.
Four Principles of Bioethics
One modern method of analysis is to dissect a medical case in terms of four prin-
ciples. These principles are (patient) autonomy, beneficence, nonmaleficence, and
justice.
Autonomy refers to the right to make decisions about one’s own life and body
without coercion by others. It honors the value that democracies place on allowing
individuals to make their own decisions about whom to marry, whether to have
children, how many children to have, what kind of career to pursue, and what kind
of life they want to live. Insofar as is possible and to the extent that their decisions
do not harm others, individuals should be left alone to make fundamental medical
decisions that affect their own bodies and lives.
John Stuart Mill was a political theorist as well as an ethical theorist. In his
most famous work of politics, On Liberty (1859), he defended this ideal of autonomy
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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 17
against the growing powers of government. He there defends “one simple principle,”
his so-called harm principle: “that the only purpose for which power can rightfully
be exercised over any member of a civilized community, against his will, is to pre-
vent harm to others. His own good, either physical or moral, is not a sufficient
warrant. Over himself, over his own body and mind, the individual is sovereign.”
Autonomy rejects paternalistic ethics. During the patient’s rights movement in
the early 1960s in America, feminists scorned paternalistic physicians as sexist octo-
genarians who imposed their rigid ideas on a more enlightened, freethinking,
younger generation.
Beneficence, or helping others, grounds compassion. It grounds the moral dif-
ference between therapeutic and nontherapuetic experiments. If physicians intend
to help diabetics, beneficence justifies experiments on diabetics, but if they have
no such intent, the experiment may be unjustified.
Beneficence can be seen both as a principle and as a virtue for physicians.
Physicians receive special powers, income, and prestige from society and, in return,
are asked to help patients. Medical training requires this trait, as demands on a
student increase on a slope between premedical years and residency. Self-sacrifice
is part of medicine. Ideally, physicians should want to help others, but if the inter-
nal desire is lacking, they should act this way out of duty. The principle of benefi-
cence spells out this duty.
Beneficence may conflict with autonomy (as any of these principles may conflict
with each other). Consider the involuntary psychiatric commitment of homeless
people with schizophrenia. Is it better to let such people wander the cold streets of
a big city or to incarcerate and medicate them against their will? Should we let them
“die with their rights on” or inject them with sedatives and antipsychotic drugs “for
their own good”? Maybe we should do nothing at all and not risk making them
worse off. After all, who are we to say that it is beneficent to do so? Maybe home-
less people with schizophrenia want to stay as they are.
How beneficence and autonomy are balanced in particular cases is not easy to
understand. Indeed, when John Stuart Mill advocated both utilitarianism and per-
sonal autonomy, critics wondered whether he contradicted himself.
Nonmaleficence, not harming others, echoes an ancient maxim of professional
medical ethics, “First, do not harm.” Above all, this maxim implies that physicians
not technically competent to do something shouldn’t do it. So, medical students
should not harm patients by practicing on them without consent: Patients are there
to be helped, not to help students learn.
Patients should not leave encounters with physicians worse off than they were
before. This crucial principle of medical ethics prohibits corruption, incompetence,
and dangerous, nontherapeutic experiments. It explains why the 80,000 deaths per
year in American hospitals from mistakes horrify critics.
The principle of nonmaleficence also accords with Mill’s harm principle: The
state and society should not attempt to shape all citizens for the better. In a funda-
mental sense, the first obligation we have is to leave each other alone, especially
those who don’t want our help. That means that physicians should not harm patients
by unsolicited intrusions.
The last principle, justice, has both a social and a political meaning. Socially, it
means treating similar kinds of people similarly (this is the so-called formal element
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18 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles
of the larger principle). A just physician treats each patient the same, regardless of
his or her insurance coverage.
Politically, the principle refers to distributive justice and, in medicine, to the
allocation of scarce medical resources. Because there are many theories of justice,
this principle is not self-evident. For example, Rawls’s theory of justice demands
that medicine serve the poorest people.
But another view equates justice with simple egalitarianism: Medicine is just if
it treats each patient equally. Of course, that goal would not be easy to achieve
either, and doing so would go a long way toward realizing Rawls’s ideal. At the
least, it would mean a guarantee of equal access to medical care for every citizen,
such that insurance coverage would not be a factor in selection of which patient
receives a liver transplant.
In the most minimal sense, justice requires physicians to treat patients impar-
tially, without bias on account of gender, race, sexuality, or wealth. Even in such a
minimal sense, justice requires a high standard of behavior among physicians.
Final Comment
And what, one might ask, is the point of studying ethics or bioethics in the first
place? As an answer, we might cite philosopher Richard Rorty’s answer to the
question, “How is the study of philosophy supposed to benefit someone?” To which
Rorty replied, “The point of reading philosophy is not to find a way of altering one’s
inner state, but rather to find better ways of helping us overcome the past in order
to create a better human future.”
DISCUSSION QUESTIONS
1. Cite three examples where utilitarians and Kantians disagree about issues in
bioethics.
2. Cite two examples where utilitarians and Kantians would advocate impartial
positions but the Ethics of Care would advocate a partialist position.
3. Cite three examples where definition of “person” is important in bioethics.
4. Discuss examples from recent political campaigns of some of the fallacies
discussed in this chapter.
NOTES
1. R. M. Hare and Louis Pojman, eds., Ethical Theory: Classical and Contemporary Readings, Wadsworth,
Belmont, CA, 2007, pp. 480–481.
2. P. A. Woodward, ed., The Doctrine of Double Effect: Philosophers Debate a Contro versial Moral Principle,
University of Notre Dame Press, Notre Dame, IN, 2001.
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This chapter discusses two kinds of cases involving dying: nonterminal patients
with unbearable conditions who want to die with a physician’s help and terminal
patients who also want to die with a physician’s help.
THE CASE OF ELIZABETH BOUVIA (1983–PRESENT)
In 1983, Elizabeth Bouvia’s father drove her from Oregon to Riverside General
Hospital in California, where psychiatrists admitted her as a voluntary suicidal
patient. Wanting “just to be left alone and not bothered by friends or family or
anyone else and to ultimately starve to death,” she had already attempted suicide
once.1 “Death is letting go of all burdens,” she claimed. “It is being able to be free
of my physical disability and mental struggle to live.”
Almost totally paralyzed from cerebral palsy, Elizabeth, then 25 years old, never
had the use of her legs, although her right hand could control a battery-powered
wheelchair and the use of that hand also enabled her to smoke cigarettes. She could
use her facial muscles to chew, swallow, and speak. She also had painful, severe
degenerative arthritis. As a California resident, her medical care was paid for by
Medi-Cal, a state–federal program.
She had a hard life. At five, her parents divorced. Afterward, her mother raised
her for five years but then abandoned her to a children’s home. The following
account comes from two physicians:
When Elizabeth turned 18, her father told her that he would no longer be able to
care for her because of her disabilities. She then tried to do the right thing and be
independent. She found state aid and lived on her own in an apartment with a
live-in nurse. She finished a high school degree and then graduated in 1981 from
San Diego State University with a bachelor’s degree in 1981. She entered a master’s
program at the university’s School of Social Work, and volunteered for eight months
C H A P T E R 2
Requests to Die: Terminal
and Nonterminal Patients
Elizabeth Bouvia, Larry McAfee, Brittany Maynard, Jack
Kevorkian, Anna Pou
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20 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
in an associated program. In August 1982, she married an ex-convict, Richard
Bouvia, and conceived a child with him, but a few months later, it miscarried. After
being unable to find work or support from her parents, Richard abandoned her,
stating—according to pleadings in the case—that he “could not accept her disabilities,
a miscarriage, and rejection by her parents.” A few days after being abandoned,
Elizabeth Bouvia got a ride to Riverside General and entered its emergency room,
stating that she wanted to commit suicide.2
During her first four months at Riverside Hospital, the chief of psychiatry, Donald
Fisher, supervised her treatment. When he refused to let her starve, Elizabeth con-
tacted the American Civil Liberties Union (ACLU) and telephoned a reporter. Richard
Scott of Beverly Hills, both a physician and a lawyer, represented her free of charge.
The Legal Battle: Refusing Sustenance
In a hearing before California probate judge John Hews, Fisher testified that because
Elizabeth might change her mind, he would not let her starve and would force-feed her:
“The court cannot order me to be a murderer nor to conspire with my staff and employ-
ees to murder Elizabeth.”3 Elizabeth Bouvia asked the judge to block her force-feeding.
Habeeb Bacchus, associate chief of medicine at Riverside Hospital and Bouvia’s
second physician, argued that “being allowed to die when there’s no need for her
to die—this is a dangerous precedent. Patients might wonder, ‘Am I next slated to
be allowed to die?’”4
Advocates for the disabled feared that if Elizabeth died, other disabled people
might follow. A lawyer at the Law Institute for the Disabled asserted that Bouvia
symbolized a “social problem” of disabled people who are told they cannot be pro-
ductive and said, “She needs to learn to live with dignity.”5
At this point, the case escalated into a public debate:
Disabled individuals held vigils at the hospital to convince her to change her
mind. Bouvia’s estranged husband hitchhiked to Riverside from Iowa, retained
lawyers, and asked to be named her legal guardian. A convicted felon volunteered
to shoot her.6
Judge Hews allowed the force-feeding. Admitting Elizabeth’s rationality, sincer-
ity, and competence, he decided based on the “profound effect on the medical staff,
nurses, and administration of the hospital,” as well as the “devastating effect on
other . . . physically handicapped persons.”7 Bouvia’s lawyer said that Hews accepted
“the Chicken Little defense that the sky would fall if Ms. Bouvia wasn’t force-fed.”8
Judge Hews held that since the patient was not terminally ill and could live for
decades, “there is no other reasonable option.”
Columnist Arthur Hoppe thought otherwise:
I had the feeling that the judge, the doctor, and the hospital had found Elizabeth
Bouvia guilty—guilty of not playing the game. It was as though the Easter Seal Child
had looked into the camera and said being crippled was a lousy deal and certainly
nothing to smile about.9
Boston University law professor George Annas blasted Hews:
The judge’s decision begs the question: Is there a reasonable option? In the adver-
sary proceeding played out in California, no one seemed to search for reasonable
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 21
options. The county, in fact, consistently took the most extreme position.
It continually threatened to eject Ms. Bouvia from the hospital by force, and leave
her out on the front sidewalk, hoping someone would pick her up and take her
away. Almost from the beginning, the county and hospital made it clear that they
did not care whether she lived or died but, because of their own fear of potential
legal liability, would not let her die at Riverside Hospital.10
Elizabeth appealed but continued to be force-fed. When aides pushed plastic
tubing in her mouth, she bit through it. Thereafter, three attendants held her down,
while another inserted tubing through her nose into her stomach, pumping in a
liquid diet. Annas commented on this gruesome scene:
I do not believe competent adults should ever be force-fed; but efforts at persuading
the individual to change his or her mind, and offering oral nutrition should con-
tinue. If a court determines, however, that invasive force-feeding is required, . . .
then to [prevent] hospitals from becoming the most hideous torture chambers, some
reasonable limit must be placed on this “treatment.”11
Elizabeth Bouvia lost her first appeal and left Riverside Hospital in 1984. Indi-
vidual commentators interpreted differently what happened next. Two physicians
wrote in a medical journal:
The standoff continued until April 7, when Ms. Bouvia unexpectedly checked herself
out of the hospital. The hospital bill for the 217 days . . . was more than $56,000.
Ms. Bouvia went to a hospital in Mexico, known for amygdalin (Laetrile) treatments
for cancer. She believed the staff would help her die. Her new physicians, however,
became convinced that she wanted to live. Two weeks later, Ms. Bouvia left the
hospital, hired nurses, and moved to a motel. Three days later, with friends, a
reporter, and an intern from . . . at her side, she gave up . . . and took solid food.
Ms. Bouvia [then] said that she wanted treatment, . . . .12
This account emphasizes Elizabeth Bouvia’s unexpected departure from the hos-
pital, her costly hospital bills at the public expense, the agreement between Mexican
and American physicians in refusing to allow her to die, and her seemingly arbitrary
decision to give up starving herself.
In contrast, lawyer George Annas writes:
Two years ago, this column dealt with Elizabeth Bouvia’s unequal and doomed strug-
gle. . . . After losing both in the hospital and in the courtroom, Ms. Bouvia fled to
Mexico on April 7, 1984, to seek her death. She was soon persuaded that Mexican
physicians and nurses would be no more sympathetic to her plan than those at
Riverside, and so returned to California. Because of the brutal force-feeding she had
endured at Riverside, she was afraid to return there. Since no other facility would
admit her unless she agreed to eat, she resigned herself to eating and entered a
“private care” location. There she remained, without incident, for more than a year.13
An advocate for dignified dying, the Hemlock Society’s Derek Humphrey, wrote
even more sympathetically:
Her troubles multiplied. The graduate school where she had been studying refused
to readmit her, and her brother drowned in a boating accident. Not long after,
Elizabeth had a miscarriage, and she learned her mother was dying of cancer.
. . . Determined once again to be in charge of her fate, she asked her father
to take her to the county hospital in Riverside, near Los Angeles (an area where
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22 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
she had friends), for an examination. She checked herself into the psychiatric ward
and told physicians she wanted to die by starvation. Elizabeth specifically asked
that, until she died, she be looked after normally and given painkillers when her
arthritis was troublesome.14
Disability advocate Paul Longmore offered a very different perspective on Bou-
via’s case, arguing that it reflected rank prejudice against the disabled. He wrote:
The very agencies supposedly designed to enable severely physically handicapped adults
like her to achieve independence . . . become yet another massive hurdle they must
surmount, an enemy they must repeatedly battle but can never finally defeat. . . .
[When she tried to go on internship,] the SDSU [San Diego State University]
School of Social Work refused to back her up. They wanted to place her at a center
where she would only work with disabled people. She refused. Reportedly, one of
her employers told her she was unemployable, and that, if they had known just
how disabled she was, they would never have admitted her to the program. . . .
The attorneys brought in three psychiatric professionals to provide an inde-
pendent evaluation. None of them had experience or expertise in dealing with
persons with disabilities. In fact, Elizabeth Bouvia had never been examined by a
psychiatric or medical professional qualified to understand her life experience. . . .
Her examiners prejudicially concluded that because of her physical condition
she would never be able to achieve her life goals, that her [physical] disability was
the reason she wanted to die, and that her decision for death was reasonable. . . .
[Judge Hews] too declared that Ms. Bouvia’s physical disability was the sole reason
she wished to die.15
Each account appeared in scholarly journals, implying objectivity, yet the
physicians portray her as irresponsible; Annas and Humphrey portray her as a
heroine fighting a cold bureaucracy; and Longmore portrays her as a victim of a
prejudiced system and of misguided, do-gooder lawyers. Physicians refer to her as
“Bouvia,” Humphrey calls her “Elizabeth,” and Longmore uses “Elizabeth Bouvia”
or “Ms. Bouvia.” The physicians say that “she got a ride” to Riverside, as if she
had hitchhiked to some arbitrary location; Humphrey says that her father took her
to a place “where she had friends.” Longmore emphasizes her desire to be inde-
pendent; Humphrey emphasizes her physical pain and social trauma. Longmore
suggests that society is prejudiced against disabled people and thus that Elizabeth
Bouvia’s disability is not so much her problem as society’s problem. Humphrey
writes from a point of view inside Elizabeth Bouvia; the physicians write from the
viewpoint of hospital staff members who deal with problematic patients. Long-
more critiques an inadequate system that forces terrible, desperate decisions.
In 1985, Elizabeth entered Los Angeles County–USC Medical Center, where
physicians installed a morphine pump to control pain caused by her worsening
arthritis. She promised to eat, so she was not force-fed.
After two months, physicians transferred her to nearby High Desert Hospital,
another public hospital. Although she ate there, her physicians decided that she
wasn’t eating enough and again force-fed her. They reasoned that “since she is occu-
pying our space, she must accede to the same care which we afford every other
patient admitted here, care designed to improve and not detract from chances of
recovery and rehabilitation.”16 Critics objected: Must all patients who occupy High
Desert hospital’s space do as they are told? Would the hospital want to market this
theme—”Enter High Desert Hospital and Do as We Say”?
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 23
Elizabeth petitioned courts to stop her forced feeding. At this time, she weighed
only 70 pounds. A consultant on nutrition noted that a weight of 75 or 85 pounds
“might be desirable.” Her physicians wanted her to weigh about 110 pounds.
At a hearing, Judge Warren Deering interpreted her low weight as “not moti-
vated by a bona fide right to privacy but by a desire to terminate her life.”17 He
said the right to privacy did not cover suicide by starvation and ordered force-
feeding, because “Saving her life is paramount.”
Elizabeth appealed and the California Court of Appeal ruled in her favor: “A desire
to terminate one’s life is probably the ultimate exercise of one’s right to privacy.”18 This
Court found “no substantive evidence to support the [lower] court’s decision.”
Judge Deering had been concerned that Elizabeth could live for decades, but
the Court dismissed that concern: “This trial court mistakenly attached undue
importance to the amount of time possibly available to her, and failed to give equal
weight and consideration for the quality of that life; an equal, if not more signifi-
cant, consideration.”
The appeals court concluded:
This matter constitutes a perfect paradigm of the axiom: “Justice delayed is justice
denied.” Her mental and emotional feelings are equally entitled to respect. She has
been subjected to the forced intrusion of an artificial mechanism into her body
against her will. She has a right to refuse the increased dehumanizing aspect of her
condition. . . . The right to refuse medical treatment is basic and fundamental. It
is recognized as part of the right of privacy protected by both the state and federal
constitutions. Its exercise requires no one’s approval. It is not merely one vote
subject to being overridden by medical opinion. . . .
[A precedent has been established that when] a doctor performs treatment in
the absence of informed consent, there is an actionable battery. The obvious corol-
lary to this principle is that a competent adult patient has the legal right to refuse
medical treatment. [Moreover,] if the right of the patient to self-determination as to
his own medical treatment is to have any meaning at all, it must be paramount to
the interests of the patient’s hospital and doctors. . . . The right of a competent
adult patient to refuse medical treatment is a constitutionally guaranteed right
which must not be abridged. . . .
In Elizabeth Bouvia’s view, the quality of her life has been diminished to the
point of hopelessness, uselessness, unenjoyability, and frustration. She, as the
patient, lying helplessly in bed, unable to care for herself, may consider her exist-
ence meaningless. She is not to be faulted for so concluding. . . . As in all matters,
lines must be drawn at some point, somewhere, but that decision must ultimately
belong to the one whose life is in issue.
The state appellate court held that competent adults could refuse medical treat-
ment: Building on prior decisions in other states,19 this state court said that a com-
petent adult patient had a constitutionally guaranteed right to refuse medical
treatment that must not be abridged. This court also had strong words about
force-feeding:
We do not believe it is the policy of this State that all and every life must be pre-
served against the will of the sufferer. It is incongruous, if not monstrous, for med-
ical practitioners to assert their right to preserve a life that someone else must live,
or more accurately, endure, for “15 or 20 years.” We cannot conceive it to be the
policy of this State to inflict such an ordeal upon anyone.
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24 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
If nothing else, Elizabeth Bouvia, frail, small, alone, and barely able to move,
won a remarkable victory. Preceding the U.S. Supreme Court’s Cruzan decision by
five years, she wrested from the courts a victory about the right to die for competent
patients.
Of great importance, after her victory, Elizabeth did not kill herself. When some
caring people offered to help her die, she changed her mind. Most important, by
giving her control over her life, they gave her a reason to live.
A decade after her victory in court, she described her body as “gnarled and
useless.”20 In 1994, she lived in California on Medi-Cal, in a private hospital room
with 24-hour-day care at a cost of $300 a day. A morphine pump controlled her
pain, and she weighed 100 pounds. She said her life was “a lot of needles and bags,”
and she spent her time watching television. “I wouldn’t say I’m happy, but I’m
physically comfortable, more comfortable than before. There is nothing really to do.
I just kind of lay here.”
In 1992, Richard Scott, the physician and lawyer who represented Elizabeth
Bouvia and who battled depression most of his life, committed suicide. When he did,
Elizabeth Bouvia said, “Jesus, I wish he could have come in and taken me with him.”
In 1996, Elizabeth appeared on 60 Minutes on the 10th anniversary of a previ-
ous 60 Minutes story about her. Then she lived in Riverside County Hospital, but
in 1997, a new pro bono attorney Griffith Thomas, M.D., got her disability payments
put into a trust fund that allowed her to live in her own apartment with 24-hour-
a-day in-home assistants. Even though this cost far less than her hospital room, it
took a decade to accomplish.
Elizabeth, in 1996, still had pain each day and still needed morphine. She did
not intend to be alive for another story by 60 Minutes in 2006 and felt ambivalent
about her life. An obituary for a disability rights advocate in 2008 mentioned that
Elizabeth was still alive.21 In 2016, she seemed to be still alive, but no one had heard
anything about her.
THE CASE OF LARRY MCAFEE (1985–1995)
In 1985, an accident left 29-year-old Larry McAfee almost completely paralyzed
(a C-2 quadriplegic). While studying mechanical engineering at Georgia State Uni-
versity, he fell off of his motorcycle on a dirt road, snapped his head, and crushed
his two top vertebrae. Left with use only of his eyes, mouth, and head, he could
not clear his throat and sometimes choked. He needed a ventilator to breathe and
could not control his bladder and bowels. He was unmarried and could feel no
pleasure from sexual activity.
McAfee had a $1 million health insurance policy, and using it, he remained for
over a year at the expensive Shepherd Spinal Center in Atlanta, where the average
stay for C-1 to C-4 patients is 19 weeks. He then moved to an apartment in Atlanta,
where he insisted on certified nurses who were three times more expensive than
home health aides. After 16 months of such living, he exhausted his insurance. Not
wanting to be a burden, he refused his family’s offer of care.
With no resources, he became eligible for Medicaid, the fund in each state that
pays for medical care for the indigent. McAfee wanted Georgia Medicaid to pay for
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 25
his care in an apartment and refused to enter a state nursing home. Only a small
number of nursing homes in America admit ventilator-dependent patients such as
Larry McAfee. Even fewer take Medicaid patients, because Medicaid’s reimburse-
ment doesn’t pay for the staffing needed for such patients. Georgia officials even-
tually transferred him to a Medicaid nursing home in Ohio that could care for
respirator-dependent C-1 patients. This facility accepted McAfee on a temporary
basis until Georgia could find a bed for him.
In Ohio, Larry wouldn’t make appointments for vocational rehabilitation. The
administrator there said, “Larry was very demanding, wanted things precisely the
way he wanted them. . . . I had nurses toward the end who just couldn’t work with
him anymore because they were just extremely, extremely frustrated.”22 He noted
that McAfee’s family and friends all lived in Georgia.
McAfee claimed that he had been housed in Ohio with demented, senile,
and brain-damaged patients who were being cheaply warehoused with only one
or two staff for as many as 40 patients. The easiest way to warehouse such
patients is to keep them heavily sedated. McAfee said that he experienced intense
loneliness and received inadequate personal care. “You’re just a sack of potatoes,”
he said.23
After two long years, it became clear to Ohioans that McAfee had been dumped
on them, so officials angrily hustled him onto a plane and left him in the emergency
room at Grady Memorial Hospital in Atlanta.
There, Larry spent several miserable months in the intensive care unit. In 1989,
Briarcliff Nursing Home, in a suburb of Birmingham, Alabama, accepted him as a
patient, and he was transferred there.
Larry, one day, called the radio talk show of Russ Fine, a disability advocate
and director of the Injury Control Research Center at the University of Alabama at
Birmingham. According to Fine, McAfee’s treatment represented “everything that’s
wrong about the system that serves disabled people.”24
On first meeting with Larry, Fine found him lying in bed staring at the ceiling,
with no voice-activated telephone and no television. All he could do was stare “at
whatever happened to be in front of his face. From a quality of life standpoint, it
was a devastating commentary on a society with a very advanced health-care sys-
tem.”25
A reporter once arrived to find McAfee’s urinary catheter not connected to a
container and spilling urine on the floor. Fine says, “These facilities were not
equipped to take care of a patient such as Larry, with labor-intensive health-care
requirements.”26
In 1989, four years after Elizabeth Bouvia’s victory, Larry filed suit in federal
court to exercise his right to die. After a heart-wrenching 45-minute hearing in
Fulton County Superior Court, Judge Edward Johnson ruled in McAfee’s favor.
Because his ventilator had once dislodged accidentally, causing him to suffocate,
Larry did not want to experience such feelings again, so he asked to be sedated
before disconnection. Judge Johnson granted this, declaring that no civil or criminal
penalty would attach to any doctor who helped.
Everyone assumed that with his legal victory, McAfee would kill himself within
days. Like Elizabeth Bouvia, he did not. Behind the scenes, Russ Fine had convinced
McAfee to stay alive. But then Larry’s financial problems began.
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26 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
Social Security, besides financing income for Americans over 62, provides
financial assistance to disabled people as Supplemental Security Income (SSI). In
2011, SSI payments averaged $700 a month and were paid to 10.6 million disabled
Americans.27 Larry qualified for SSI assistance.
In 1989, Russ Fine persuaded Birmingham’s United Cerebral Palsy to let Larry
live temporarily in its nine-person group home. Larry stayed there on-and-off until
late 1990, but because he required expensive nurses, he then had to find somewhere
else to live.
Federal regulations affecting Medicaid block using it to pay for disabled people
to live in group homes. This structural discrimination forces such people to live
either in public hospitals or be warehoused in huge public nursing homes. When
President George Bush refused a waiver of Medicaid to help Larry, the Georgia
legislature created an independent-living facility for him and for five other patients
as an exception to Georgia’s disability law and Medicaid plan. Larry then lived in
Augusta, near its medical school.
In 1993, his accident and fight were portrayed in The Switch, a CBS movie. To
keep his disability payments, McAfee could not accept any money from the movie.
A few months later, Georgia “forgot” to fund McAfee’s group home in its state
budget. Once again, Russ Fine held Georgia’s feet to the fire on Larry’s behalf,
pointing out that the cost per person in the group home was only $52 a day. Geor-
gia found funds to continue the home for another year.
In 1993, a kink in Larry’s urinary catheter caused urine to back up. Being
paralyzed, Larry could not feel what was happening; the backup caused toxicity
and high blood pressure. This caused two devastating strokes.28 Larry survived, but
the strokes injured his brain, and he was left with just a small amount of short-term
memory.
He had planned to leave the group home for his own apartment but instead
was transferred to a long-term nursing home. This was just the kind of place Larry
had wanted to avoid. Ten years after his accident, Larry died in 1995. He died not
by his own decision but after being comatose for many months.
THE CASE OF BRITTANY MAYNARD (2013–2014)
In April 2013, Brittany Maynard, a 28-year-old Californian, experienced intolerable
migraines that turned out to be glioblastoma, the worst kind of brain cancer.29
Maynard had earned a degree in psychology in 2006 from the University of
California, Berkeley and a master’s degree in education in 2010. Passionate about
travel, she visited many countries and taught at an orphanage in Nepal.
In January 2014, surgeons debulked her tumor, removing part of her temporal
lobe, a standard stopgap measure for gliomas. However, in April 2014, experts gave
her six months to live, because her cancer was still spreading inside her skull, where
it would soon cause her confusion, headaches, and, ultimately, death.
Because she could not die on her own terms in California, she and her husband
and her family moved to Oregon in June 2014, because Oregon had passed a right-
to-die law. When she made a video for Compassion and Choices, which millions
watched, Brittany became a national symbol of the right to die with dignity. She
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 27
hoped it would help California pass a similar law; although ultimately, California
did not.30
As her quality of life worsened with fatigue, headaches, and confusion, she
decided, with the drugs prescribed by a physician in Oregon, to end her life on
November 1, which she did. Before doing so, terminal patients urged her to recon-
sider. After her death, a Vatican official condemned her “suicide” and the National
Right to Life Committee claimed Compassion and Choices had exploited her. Brit-
tany’s mother retorted, “My 29-year-old daughter’s choice to die gently rather than
suffer physical and mental degradation and intense pain does not deserve to be
labeled as reprehensible by strangers a continent away. . . .31
BACKGROUND: PERSPECTIVES ON DYING WELL
Greece and Rome
Ancient Greek aristocrats strove not simply to live but to lead lives of nobility,
honor, excellence, and beauty. Believing that “the unexamined life is not worth
living,” they thought the “important thing is not to live but to live well.” They
thought that study of philosophy would provide wisdom to approach death (philos-
ophy means “love of wisdom”). Plato records Socrates as saying, “True philosophers
make dying their profession, and . . . to them of all men, death is least alarming. . . .
So if you see one distressed at the prospect of dying, it will be proof that he is a
lover not of wisdom but of the body.”32
Socrates died famously. Sentenced to die for his political beliefs, he could have
fled Athens but chose instead to drink hemlock, a poison. At his end, he discussed
death with a friend.
The friend argues that if one is convinced of life after death, it is easy not to
fear death, but what if the soul is “dispersed and destroyed on the very day that
the man himself dies [and] may be dissipated like breath or smoke, and vanish
away, so that nothing is left of it anywhere. . . . No one but a fool is entitled to face
death with confidence, unless he can prove that the soul is absolutely immortal and
indestructible.”
Socrates replies that the soul may be immortal, but if it is not, then death is
like a sleep from which one never awakes. If so, we should not fear it, because no
one will exist to feel pain or to miss life.
Hemlock acts as a poison by decreasing circulation at the extremities, creating
distal numbness and eventually stopping the heart. Hemlock began to work during
Socrates’s abstract discussion about death, moving up from his toes to his ankles.
As the discussion ends, the state poisoner finds that Socrates’s thighs are numb
and says that when the poison reaches the heart in minutes, Socrates will die.
As his friends begin to cry, Socrates says, “Calm yourselves and try to be brave!”
He dies moments later. His admiring follower, Plato, writes, “Such . . . was the end
of our comrade, who was, we may fairly say, of all those whom we knew in our
time, the bravest and also the wisest and most upright man.”
Centuries later in Rome, Emperor Marcus Aurelius wrote that suicide surpassed
undignified dying. These Roman Stoics defended the argument for the open door:
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28 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
“If the room is smoky, if only moderately, I will stay; if there is too much smoke, I
will go. Remember this, keep a firm hand on it, the door is always open.”33
Another Stoic, Seneca, wrote about old age, “If it begins to shake my mind, if
it destroys my faculties one by one, if it leaves me not life but breath, I will depart
the putrid or the tottering edifice.”34
In the twentieth century, existentialist philosopher Jean-Paul Sartre revived the
argument for the open door.35 He emphasized that choice—even the choice of stay-
ing alive each day—is inescapable. He famously wrote, “Not to choose is always still
a choice.”
The Bible and Religious Views
The Bible does not explicitly prohibit suicide and even seems to condone the
suicides of Saul and Judas. During the fourth century, Augustine condemned sui-
cide, basing his condemnation on the sixth commandment, “Thou shalt not kill”
(Exodus 20:13).
Augustine distinguished between private killing and killing endorsed by divine
authority. Killing on one’s own authority is never right, but when God commands
it, humans should obey. So Abraham had to obey when God commanded him to
kill his son, Isaac. Individuals who so kill are instruments of God.
This reasoning underlies killing in capital punishment and just wars. The
worldly Ambrose had already said that Christians could kill in war, and Augustine
went further by condoning war against heretics. Frederick Russell in The Just War
in the Middle Ages says that through Augustine’s interpretation, “the New Testament
doctrines of love and purity were accommodated to the savagery of the Old Testa-
ment and pacifism was defeated.”36
The thirteenth-century philosopher Thomas Aquinas held that suicide is sinful
because it leaves no time for repentance; repudiates a gift from God; deprives the
community of talented people; deprives children of their parents; and is unnatural,
going against the instinct of self-preservation.
Philosophers on Voluntary Death
Michel de Montaigne in the sixteenth century concluded in “To Philosophize Is to
Learn How to Die” by saying, “If we have learned how to live properly and calmly,
we will know how to die in the same manner.”37 The Dutch philosopher Baruch
Spinoza wrote, “A free man, that is to say, a man who lives according to the dictates
of reason alone, is not led by the fear of death.”38 The English poet John Donne in
the seventeenth century wrote, “When the [terminal] disease would not reduce us,
[God] sent a second and worse affliction, ignorant and torturing physicians.”39
David Hume. In the eighteenth century, Scottish philosopher David Hume argued
that suicide “is no transgression of our duty to God.” Hume hated vanity and
observed, “The life of a man is of no greater importance to the universe than that
of an oyster.”40
In his “Essay on Suicide,” Hume disagreed with Augustine and Aquinas. For
dying patients, he argued, voluntary death is not a sin: “A house which falls by its
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 29
own weight is not brought to ruin by [God’s] providence.”41 Hume argued that if
God made the natural world through the laws of causality—the laws of biology,
medicine, and physics—then disease belonged to that world.
While Immanuel Kant argued that we have a station in life assigned to us by
God that we must not give up, Hume replied, “It is a kind of blasphemy to imagine
that any created being can [by taking his own life] disturb the order of the world.
Any suicide is insignificant to the workings of the universe and it is blasphemy to
think otherwise.”
Hume disputed Aquinas’s argument that suicide harms the community:
A man who retires from life does no harm to society; he only ceases to do good;
which, if it is an injury, is of the lowest kind. All our obligations to do good to
society seem to imply something reciprocal. I receive benefits of society, and there-
fore ought to promote its interests; but when I withdraw myself altogether from
society, can I be bound any longer? But [even] allowing that our obligations to do
good were perpetual, they have certainly some bounds; I am not obliged to do a
small good to society at the expense of a great harm to myself: when then should
I prolong a miserable existence, because of some frivolous advantage which the
public may perhaps receive from me?
Immanuel Kant. Hume’s contemporary, German philosopher Immanuel Kant,
opposed suicide. For Kant, first, an act is right if it derives from a rule that can be
universalized, and suicide also cannot be universalized because its motive is self-in-
terest (e.g., escaping pain). For Kant, self-interest can never justify moral decisions,
only respect for the moral law.
Second, a person “who does not respect his life even in principle cannot be
restrained from the most dreadful vices.” If I do not respect my own life, I will not
respect anything else. To respect the sacred value of the lives of others, I must
respect the sacred value of my own. Third, Kant wrote, “Human beings are sentinels
on earth and may not leave their posts until relieved by another beneficent hand.
God is our owner; we are His property.”42
Finally, suicide is immoral because people should always be treated as ends in
themselves, never as mere means. This entails recognizing one’s free will as an
absolute, rather than as a relative, value, but destroying oneself entails destroying
that freedom of will. “Man’s freedom cannot subsist except on a condition which
is immutable. This condition is that man not use his freedom against himself to his
own destruction.”43
In other words, Kant believed that each person must treat his body as an “end
in itself.” “To deprive oneself of an integral part of organ (to mutilate oneself), for
example, to give away or sell a tooth so that it can be implanted in another person,
or to submit oneself to castration in order to gain an easier living as a singer, and
so on, belongs to partial self-murder.”44
John Stuart Mill. In his 1859 essay, On Liberty, John Stuart Mill famously wrote:
One very simple principle [is] entitled to govern absolutely the dealings of society
with the individual in the way of compulsion and control, whether the means
used is physical force in the form of legal penalties, or the moral coercion of
public opinion. That principle is that the sole end for which mankind are
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30 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
warranted, individually or collectively, in interfering with the liberty of action of
any of their number, is self-protection. That the only purpose for which power
can be rightfully exercised over any member of a civilized community, against his
will, is to prevent harm to others. His own good, either physical or moral, is not
a sufficient warrant. . . . The only part of the conduct of any one, for which he
is amenable to society, is that which concerns others. In the part which merely
concerns himself, his independence is, of right, absolute. Over himself, over his
own body and mind, the individual is sovereign.45
According to this principle, so long as others are not harmed, we can do what-
ever we want with our own lives and bodies.
Mill distinguished between self-regarding and other-regarding acts, arguing that
we may censure others only for other-regarding acts. Paradoxically, Mill’s analysis
can both support and condemn suicide. On one hand, taking one’s own life is
clearly self-regarding; suicide is often described as the ultimate personal issue. On
the other, suicide can affect others, especially when they believe they should have
prevented it. If a suicidal person desired to make others feel bad, then Mill’s prin-
ciple condemns the suicide.
The Twentieth Century. A century ago, only poor people without families went to
hospitals to die. The nature of deadly diseases has also changed. Before World War
II, most people died of sudden-onset, acute diseases such as pneumonia and chol-
era. Today, people live longer and die slowly from chronic diseases such as emphy-
sema, diabetes, dementia, cancer, and coronary artery disease. Such diseases slowly
erode the quality of life, and many people want to die before such quality becomes
too bad.
Before the Harrison Act of 1914, Americans could purchase heroin and
opiates to lessen the pain of terminal cancer and to die at home. Today, physi-
cians control such drugs, death has been medicalized, and most people die in
hospitals.
In 1935, American feminist Charlotte Perkins Gillman killed herself, writing
that she preferred “chloroform to cancer” and that “the record of a previously noble
life is precisely what makes it sheer insult to allow death in pitiful degradation. We
may not wish to ‘die with our boots on,’ but we may well prefer to ‘die with our
brains on.’ ”46
The Nazis and “Euthanasia”
Debates about dying often refer to German physicians during the Nazi era, when
such physicians, in the name of “euthanasia,” killed 90,000 patients with mental or
physical inferiority. This “Nazi argument” bears scrutiny.
First, Nazi physicians administered the Final Solution to the “problem” of how
to cleanse Germany of racially inferior non-Aryan peoples. Under this secret pro-
gram, physicians and the SS (Schutzstaffel) killed 6 million Jews, 600,000 Poles,
thousands of Gypsies, and hundreds of gay men and lesbians.
Physician Leo Alexander famously argued in 1949 that the killing programs
began with the belief that some people are better off dead than alive because their
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 31
quality of life is poor.47 In 1986, another New York psychiatrist, Robert Jay Lifton,
argued similarly, although his “first step” differed from that of Alexander:
The Nazis justified direct medical killing by use of the . . . concept of “life unwor-
thy of life,” lebensunwertes Leben. While this concept predated the Nazis, it was
carried to its ultimate racial and “therapeutic” extreme by them.
. . . Of the five identifiable steps by which the Nazis carried out the destruction
of “life unworthy of life,” coercive sterilization was the first. There followed the
killing of “impaired” children in hospitals, and then the killing of “impaired”
adults—mostly collected from mental hospitals—in centers especially equipped with
carbon monoxide. The same killing centers were then used for the murders of
“impaired” inmates of concentration camps. The final step was mass killing, mostly
of Jews, in the extermination camps themselves.48
People opposed to physician-assisted dying often cite Alexander and Lifton.
They also emphasize that Germany’s medical professors took the first dangerous
step down the slope.
J. C. Wilkes argued differently that the first step down the Nazi slope came
when physicians mercy-killed a few severely handicapped infants.49 Starting in 1937,
a father who killed his mentally retarded child received only a mild rebuke. Two
years later, Dr. Karl Brandt examined an infant named Knauer, born blind and
missing an arm and a leg. Hitler cleared him to kill Knauer and all similar infants.
Wilkes claims these two test cases led to the first phase of deaths in Germany in
which physicians killed as many as 6,000 disabled children.
Most German parents did not consent to these killings. Officials took the babies
and children out of the homes, and parents never heard from them again.
What about claims by Alexander, Lifton, and Wilkes about the first step that
led down the slippery slope? In rebuttal, many experts say this is just history. They
emphasize that Germany had been anti-Semitic since the time of the Crusades.
Instead of a subtle first step, Nazi physicians rode a tsunami that had been building
for centuries.
The Nazi “euthanasia” program also misleads in three ways: It had nothing in
common with (1) competent patients who are dying and who (2) voluntarily request
assistance in dying. Nazi “euthanasia” was also (3) not “good deaths” but despicable
murders.
Overall, the Nazi argument often contains many different claims, including:
1. Involuntary killings of people for medical reasons led to the Holocaust.
2. Involuntary killings of people by physicians led to the Holocaust.
3. Justifying medical killings of people for reasons of quality of life led to the
Holocaust.
4. Involuntary sterilization of retarded, psychotic, and demented people led to the
Holocaust.
5. The killing of impaired children led to the Holocaust.
6. Eugenics, the desire of Nazis to create a Master Race, led to the Holocaust.
7. Deep cultural racism and anti-Semitism led to the Holocaust.
8. Acceptance by physicians of a new role as killers led to the Holocaust.
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32 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
Because all its victims died involuntarily, and because no terminal patients died
voluntarily, “playing the Nazi card” does not illustrate good reasoning. (Neverthe-
less, in any long discussion in bioethics, the possibility—especially on talk radio or
in letters to the editor—that someone will bring up the Nazis or Hitler approaches
100 percent, a fact often referred to as “Godwin’s Law.”)
Hospice and Palliative Care
Founded in the United States in 1980 by Derek Humphrey, the Hemlock Society
helped people with terminal illness die with dignity and advocated legalized physi-
cian-assisted dying. In 2005, it became Compassion & Choices.
In the 1960s, physicians Elisabeth Kübler-Ross, working in Chicago, and Cicely
Saunders, in Britain, emphasized making terminal patients comfortable, beginning
the hospice movement, which gives dying patients dignity and control over their final
months. Originally, hospices were residences, but the concept evolved to visiting
nurses treating patients at home.
Because of the work of these two women, physicians today better relieve pain
and better attend psychologically to dying patients than 60 years ago. In the United
States, Medicare pays for six months of hospice.
Around 1986, palliative care began as a medical specialty. For dying patients, it
strives to relieve of nausea, boredom, itching, suffocation, immobility, depression,
and pain. It forgoes experimental treatments.
Dying in Holland
In 1971, a Dutch physician killed her terminally ill mother, making Holland an
ethics laboratory for physician-assisted dying. Critics saw these physician-assisted
deaths as accelerating a growing culture of death. They claimed that this culture
began in 1973 with legalization of abortion. In 1973, the Dutch formed guidelines
for physician-assisted death: (1) Only competent patients can request death. (2)
Requests must be repeated, non-ambivalent, unpressured, and documented. (3) Phy-
sicians must consult another physician. (4) Patients must be in unbearable pain or
suffering, without likelihood of improvement.50
Holland has universal medical coverage, including long-term nursing home
care. Dutch patients see physicians who have known them for years.
So did Holland’s mercy killings create a slippery slope into barbarism? In 1990,
its Remmelink Commission reported that between 1973 and 1990, Dutch physicians
had killed a thousand incompetent patients, a direct violation of the guidelines.51 All
patients were terminally ill. Most had cancer or AIDS and, when competent, had
asked to have physicians help them die. So voluntary euthanasia did spread to the
killing of incompetent patients. Nevertheless, some limits exist. Without prior dis-
cussion with a physician or an advance directive, comatose patients like Terri Schi-
avo cannot be legally assisted to die in Holland.
Some cases pushed the limits, such as when a physician killed a woman in her
20s who had suffered a decade of severe anorexia. In 1993, a physician killed a
woman after the death of her two children and the failure of her marriage left her
depressed.
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 33
In 2001, after 30 years of semi-legalization, physician-assisted dying became com-
pletely legal in Holland, having the support of 90 percent of Dutch citizens. Dutch
law now includes the right of patients in the early stages of dementia
or amyotrophic lateral sclerosis to sign advance directives to be killed at a later date.
In early years, Dutch physicians rebuffed 66 percent of patients who requested
death. By 2005, and in a pattern also seen in the American Northwest, the number
of patients rejected had dropped to 12 percent, with another 13 percent changing
their minds and another 13 percent dying before the physician could assist.52
In 2002, the Dutch Parliament extended its previous euthanasia legislation to
competent adolescents aged 16 to 18 and, with consent of parents, teenagers aged
12 to 16. The Groningen protocol began in March 2006 where children under age 12,
and especially babies, could be killed with parental consent. Two physicians had to
agree that the child was terminally ill with no prospect of recovery and suffering
great pain.53 This protocol legalized previously secret euthanasia in babies in Dutch
hospitals, especially for babies with spina bifida.
In 2002, Belgium legalized physician-assisted dying for adults, Luxembourg did
so in 2011, and also in 2011, Switzerland legalized some kinds of physician-assisted
dying. Nevertheless, despite the hysteria of conservative critics, physician-assisted
dying has been slow to be accepted by other developed countries.
Jack Kevorkian
In the 1990s, retired pathologist Jack Kevorkian created an ethical firestorm by
helping over 100 American patients to die.
The son of Armenian immigrants, he grew up in Michigan and graduated from
medical school in 1953. After residency, he worked from 1969 to 1978 in Detroit at
Sarasota Hospital as director of laboratories. In the mid-1980s, he retired and lived
on his savings and Social Security, $550 a month. He lived simply in a tiny, two-
room apartment near his two sisters.
Compassion did not originally motivate Kevorkian. Instead, he wanted to
increase organs for transplantation. This failed because most terminal patients are
unsuitable donors. Always a loner, he scorned membership in medical societies.
“Instinctively, as a student, I thought they were corrupt,” he says. “I’ve been inde-
pendent all my life.” Afraid to fly and hating to drive far, his patients had to come
to him. He also accepted no money from the patients whom he helped to die.
In 1990, he helped 54-year-old Oregonian Janet Adkins to die, setting off a
national debate. In 1988, Adkins had become frustrated by her inability to remem-
ber. She had early Alzheimer’s disease, the fourth-largest killer of Americans. At
the time, assisted suicide was not illegal in Michigan. When Adkins arrived in
Michigan in 1990, Kevorkian and his sister interviewed her for two hours. Nobody
thought she was depressed or that she could be helped by medicine. She signed
documents and made videotapes to prove she knew what she was doing.
The next day, June 4, 1990, Adkins met Kevorkian alone and the two drove
away in his rusty Volkswagen van to a park in Oakland County, where inside his
van, he had Janet, a cot, and a device.
The simple device consisted of three intravenous (IV) bottles hung from an
aluminum frame; Kevorkian called it the Mercitron. At the park, he connected an
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34 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
IV line to Janet Adkins and started a saline solution for fluid volume. Then she
pushed a switch that stopped the saline and released thiopental, a powerful seda-
tive. The switch started a six-second timer that activated a drip of potassium chlo-
ride. Thiopental rendered Janet Adkins unconscious, and about a minute later,
potassium chloride killed her. Kevorkian said that Janet had in effect “a painless
heart attack while in deep sleep.” The process took less than six minutes.
The local district attorney prosecuted Kevorkian for murder. Because no law
prohibited assisted suicide in Michigan, a local judge dismissed the case but ordered
Kevorkian not to use his Mercitron again (although the judge had no legal basis for
his order).
In 1991, Kevorkian assisted in the death of a woman with chronic vaginal- pelvic
pain. An autopsy showed no physical cause of her pain. With Kevorkian again
indicted for murder, a judge dismissed the charges, again because of the absence
of a Michigan law. However, authorities did suspend Kevorkian’s medical license.
Without a license, Kevorkian couldn’t obtain sodium pentothal or potassium
chloride, so he began using carbon monoxide (CO). He claimed the gas “has no
color, taste, or smell; and it’s toxic enough to cause rapid unconsciousness in rela-
tively low concentration. Furthermore, in light complexioned people it often pro-
duces a rosy color that makes the victim look better as a corpse.” He taught patients
to attach one end of a plastic tube to a canister of CO and the other to the kind of
small plastic mask used in hospitals for oxygen therapy. When he turned on the
gas and the patient breathed, death occurred within five minutes. In 1992, he
helped another victim of multiple sclerosis, who donned a mask to breathe CO.
Most bioethicists and physicians denounced him. Kevorkian responded, “Why
should I care what brainwashed ethicists and non-thinking physicians say?”54 Nor did
he worry about violating the Hippocratic Oath; he called physicians who followed it
“hypocritic oafs.” He regarded himself as a Socratic gadfly and saw his struggle in
heroic terms, comparing himself to Mahatma Gandhi and Martin Luther King, Jr.
In 1995, he opened a suicide clinic in Michigan, but the building’s owner
evicted him. By 1998, he had assisted 100 patients in committing suicide and had
been acquitted in three trials involving five of those deaths.
In 1998, the Michigan legislature passed a law making physician-assisted dying
illegal. Kevorkian then assisted in the videotaped death of ALS (Amyotrophic Lat-
eral Sclerosis) patient Thomas Youk. The videotape offered irrefutable evidence at
Kevorkian’s trial that he had deliberately broken the law.
After serving eight years of his sentence, Kevorkian struck a deal in exchange
for his release from prison. He promised not to help in assisting terminal patients
to die and was granted his freedom at age 79. He died in 2011 at age 83.
DR. ANNA POU
In a dark, humid hospital that had been damaged when Hurricane Katrina struck
New Orleans in 2005, physician Anna Pou stood her post, caring for dozens of
critically ill patients who had been abandoned by other physicians. With overflow-
ing toilets, no fresh water, no electric power, a flooded first floor preventing deliv-
ery of supplies, and temperatures above 100 degrees Fahrenheit, Dr. Pou felt
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 35
responsible for several patients who could not be evacuated. Should she leave them
to die horribly or ease them out of existence?
The seventh floor of Memorial Hospital had been leased privately to LifeCare
as a long-term care facility for senior citizens with multiple medical problems. Anna
Pou, then 51 years old and a native of New Orleans, worked as a cancer surgeon
there, supervising residents at Louisiana State University School of Medicine.55
Memorial Hospital lies three miles southwest of the French Quarter in New
Orleans, a city that is essentially a big bowl around which, high above, mighty
waters flow behind levees. Historically, during hurricanes, local residents had fled
to Memorial Hospital for shelter. When a nearby levee broke, water surrounded the
hospital, trapping everyone inside.
After Hurricane Katrina made the hospital unlivable, most physicians fled. Call-
ing her a hero for remaining, Dr. Pou’s fellow physicians described her as hardwork-
ing, dedicated, and exerting a “huge presence.”56
Helicopters on Tuesday began to evacuate the sickest patients at the hospital.
On Thursday, an important date to remember, someone informed Dr. Pou that
further evacuations might not happen. Meanwhile, thousands of survivors in New
Orleans had fled into the Super Dome, begging for rescue from the appalling
conditions.
According to Dr. Pou, at that point, “when we realized that help was not immi-
nent . . . the standard of rescue changed to that of reverse triage. It was recognized
that some patients might not survive, and priority was given to those who had the
best chance of survival. On Thursday morning, only category 3 patients [the most
gravely ill] remained on the LifeCare unit.” That left nine patients there, all of whom
eventually died.
Shocking conditions prevailed at Memorial Hospital after Hurricane Katrina.
Over 2,000 people had sought shelter there—neighbors, family members, family of
staff, and previous outpatients—crowding the hallways and draining the hospital of
food, water, and clean toilets. Staff rushed by people sprawled on the floor, crying
out for water and help. Desperate people, some criminal and some with severe
mental illness, attempted to enter the hospital to get drugs or food.
On the top floor, conditions for the last nine patients worsened each day. One
paralyzed 61-year-old person weighed 380 pounds, but seemed alert, oriented, and
interactive. Others could breathe only on ventilators; some had chronic, non-healing
wounds that required intensive nursing. All sweltered in rooms as hot as 105 degrees.
Another aspirated food and suffered a heart attack but was resuscitated.
(The following facts are in contention between Sheri Fink, M.D., and Anna Pou,
M.D. Because Fink essentially accuses Pou of legal murder and because there is no
statute of limitations on bringing charges of murder, these facts may always be
contested. There is no goodwill between these two female physicians.)
The remaining staff met on Thursday and believed that no further evacuation
or help was coming to them. According to Fink, who was not there, they may have
then decided to euthanize the remaining nine patients by sedation; Dr. Pou may
have administered the drugs to euthanize them, a motive Dr. Pou denies.
Unknown to Dr. Pou, the parent organization of LifeCare, which leased a floor
that housed these nine patients, had hired private contractors to remove the patients.
In addition, all other critically ill patients had been successfully removed from
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36 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
Memorial Hospital, including two 300+-pound men who could not walk, patients
from intensive care units, and tiny, premature babies.
Bioethicist Alto Charo notes, “From her perspective, these patients are now
terminal . . . and they’re terminal under particularly terrifying conditions: extreme
discomfort, [probably] panic, and the prospect of being abandoned while helpless.
[If Pou could not save them] her next obligation would seem to be . . . to give them
enough medicine that they’re not in any pain and they’re not in any panic and it
may or may not hasten their deaths.”57
At her trial, like Kevorkian, Dr. Pou insisted she did not intend to kill her
patients but only intended to relieve their pain. The grand jury agreed with her.
In 2009, investigative reporter and M.D./Ph.D. Sheri Fink won a Pulitzer Prize
for Five Days at Memorial, her story on what happened at Memorial Hospital after
Hurricane Katrina.58 Based on four years of research, Dr. Fink discovered that, first,
patients who had signed DNR (Do Not Resucitate), orders were judged to be the
last to be evacuated because they were judged by Dr. Pou to have the least to lose;
second, some patients on the LifeCare floor were DNR and some were not; third,
all were patients in rehabilitation on electricity-dependent ventilators but were not
terminally ill, but patients who, with excellent care, could have left the hospital.
When electricity failed, nurses and Dr. Pou at first kept some patients breathing
by manually pumping airbags, but by Thursday, they became physically exhausted
and stopped, so these patients died.
Among the 41 dead bodies analyzed by forensic pathologists, Pou was charged
with killing 9 patients. The cadavers of these nine contained high levels of morphine
and midazolam, drugs not justified by any previous symptoms. According to Fink,
the coroner testified that all nine patients died within three-and-a-half hours of each
other, timing that could not have occurred naturally.
In case-based bioethics, details matter a lot, and in new interviews, Dr. Fink
discovered that two of LifeCare’s patients on the seventh floor died on Wednesday,
but that the other nine made it through the night to Thursday. On Thursday morn-
ing, Dr. Pou allegedly told some staff that the nine patients were not going to make
it and would not be evacuated. Other physicians agreed and thought that when
everyone left Memorial, these nine patients might be subject to degradation at the
hands of vandals looking for drugs inside the evacuated hospital.
Emmett Everett was one of the nine remaining patients. He was a 380-pound
Honduran hospitalized for a colostomy to relieve his bowel obstruction. He was not
terminal, had no DNR order, and had pleaded, “Please don’t leave me behind.”
According to one staff member in Fink’s account, Dr. Pou and others concluded that
Everett weighed too much to be carried down five flights of stairs to where helicopters
were airlifting the last patients away. This is despite the fact that Rodney Scott, weigh-
ing more than 300 pounds, had been taken to the helipad and evacuated on Thursday.
In interviews years afterward, Fink claimed allegations by a staff member or
two that Anna Pou and John Thiele, a pulmonary physician, administered large
dosages of morphine and midazolam to the nine remaining patients, including Alice
Hutzler, a 90-year-old woman with bedsores and pneumonia, and Emmett Everett,
as well as to Wilda McCanus, who had a blood infection, and 90-year-old Rose
Savoie, who suffered from bronchitis and kidney problems. These last two women,
described late Thursday morning as alert and stable, both died that day.
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 37
Emmett Everett did not die immediately from the injection of drugs, but—
according to Fink—required staff to cover his face with a towel for a minute to stop
his breathing. By the time Dr. Pou, Dr. Thiele, and two nurses left, all nine patients
on the seventh floor of Memorial Hospital were dead.
Dr. Thiele and one of the nurses died by 2011. Dr. Pou in 2010 constructed a
website to counter the “lies” in Fink’s book. Steve Miles, a leading physician and bio-
ethicist, testified as an expert witness that results of drug tests were invalid for autop-
sies of bodies that had decomposed over many days in heat in excess of 100 degrees.
Miles did not believe it possible to prove that drug overdoses killed the nine patients.
RECENT LEGAL DECISIONS
Oregon, 1994
After intense battles, Oregonians in 1994 and 1997 by referendum approved the
Oregon Death with Dignity Act, forcing the act into law beginning in 1998.
The act had draconian restrictions: Patients had to (1) be clearly competent, (2)
have less than six months to live, and (3) wait 15 days before filling prescriptions
to avoid impulsive decisions. Physicians could not administer the fatal dosage, only
prescribe it.
Most Oregonians die at home. Oregon has the lowest in-hospital mortality rate
in America, suggesting many referrals for home health care and respect for advance
directives.59 Under its groundbreaking Oregon Health Plan, all its previously unin-
sured, terminally ill citizens could utilize hospice programs.60
What about the State pushing early death to save money? Well, hospice and
palliative care are not cheap. A 1998 study showed that physician-assisted death
might make a difference in only one-half of 1 percent of costs at the end of life.61
Nevertheless, critics charge that state-run plans encourage early death.
Although doctors cannot be forced to participate in such deaths, they also cannot
abandon patients. Doctors who object to participating in the death “must transfer care
so that the needs of the patient can be met” and “must not hinder the transfer.”62
In the 22 years that assisted death has been legal in Oregon, about 60 to 90
terminal patients a year requested prescriptions, and about 30 to 50 used such
prescriptions to die.63 So a third of patients who use this act do not kill themselves.
Why? Because they either die before the waiting period is over or die without using
the pills. Most just want the control that having the pills gives them. Over 10 years,
only 670 of about 100,000 dying Oregonians requested terminal drugs.64
Finally, here is a tip for all of us who want to avoid undignified dying and loss
of control in an impersonal hospital. When patients really are dying, the urge to
eat disappears. In such a state, fasting becomes easy. Although patients must be
determined, such dying can be peaceful. One study in 2003 discovered that more
Oregonians died by ceasing food and water than by asking physicians to give them
drugs, and most died at home.65
U.S. Supreme Court Decisions. In 1994, a federal judge struck down a law in
Washington state, banning assisted suicide, holding that the equal protection of
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38 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
liberty guaranteed in the Fourteenth Amendment covered a terminal patient’s right
to physician-assisted dying.66 However, the U.S. Supreme Court later disagreed.
One appeal alleged discrimination against dying patients, because only some
patients could decide to die by removal of a ventilator or feeding tube. If physicians
could legally kill by withdrawing treatment, it argued, why not by more direct
means? The highest Court answered that “the distinction between assisting suicide
and withdrawing life-sustaining treatment, a distinction widely recognized and
endorsed in the medical profession and in our legal traditions, is both important
and logical; it is certainly rational. . . .”67
In the second appeal, the same Court accepted the American Medical Associa-
tion’s claim that legalization of physician-assisted dying threatened the medical pro-
fession’s integrity as well as claims that physician-assisted dying would hurt the
disabled and poor. It also found “ample concern” for a slippery slope from increased
acceptance of physician killings.
These decisions held that a fundamental right to die did not exist in the Con-
stitution, such that state laws banning assisted suicide would violate it. The decisions
left the door open for states such as Oregon to legalize physician-assisted dying. They
mirrored what Cruzan said, that is, states could, but need not, pass this kind of law.
ANCIENT GREECE AND THE HIPPOCRATIC OATH
The Hippocratic Oath, considered the origin of medical ethics, forbids physicians
to kill patients. Originating in ancient Greece at the time of Socrates, Hippocrates
did not represent the views of most ancient Greek physicians, because he followed
the mathematician Pythagoras, who developed the famous theorem, worshipped
numbers as divine, and held that all life was sacred.
The Hippocratic writings do represent the work not of one man named “Hip-
pocrates” but of his followers. These practitioners “possessed no legally recognized
professional qualifications” and competed with gymnastic instructors, drug sellers,
herbalists, midwives, and exorcists.68
Many people today misunderstand this Oath, which makes physicians promise:
. . . that I will . . . hold him who has taught me this art as equal to my parents and
to live my life in partnership with him, and if he is in need of money, to give him
a share of mine, and to regard his offspring as equal to my brothers in male lineage,
and to teach his art—if they desire to learn it—without fee and covenant; . . .
I will apply dietetic measures for the benefit of the sick according to my ability
and judgment; I will keep them from harm and injustice.
I will neither give a deadly drug to anybody if asked for it, nor will I make a
suggestion to this effect. Similarly, I will not give to a woman an abortive remedy.
In purity and holiness, I will guard my life and my art. I will not use the knife, not
even on sufferers of stone, but will withdraw in favor of such men as are engaged
in this work.
Whatever houses I visit, I will come for the benefit of the sick, remaining free
of all intentional injustice, of all mischief and in particular of sexual relations with
both female and male persons, be they free or slaves.
What I may see or hear in the course of the treatment or even outside of the
treatment in regard to the life of men, which on no account one must spread
abroad, I will keep to myself holding such things shameful to be spoken about.
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 39
If I fulfill this oath and do not violate it, may it be granted to me to enjoy life
and art, being honored with fame among all men for all time to come; if I transgress
it and swear falsely, may the opposite of all this be my lot.69
With this oath, Hippocratic physicians solidified their membership against com-
peting healers, such as surgeons or sophistic physicians who charged for teaching.
Note that the oath refers only to teaching males and forbids those who swear by it
from performing surgery, abortions, or giving deadly drugs.
Ordinary Greek physicians thought that life had natural limitations, beyond
which only fools extended life. The concept of a natural limit infused Greek culture,
especially in architecture and theater. To attempt to go beyond such limits was
hubris and invited the gods to strike one down. So most ancient Greek physicians
helped their patients die.
ETHICAL ISSUES
The Concept of Assisted Suicide
One question raised by the cases of Elizabeth Bouvia and Larry McAfee is what to
call their intended action: suicide, rational suicide, assisted suicide, euthanasia, vol-
untary death, or self-deliverance? Let us clarify some terms here.
First, euthanasia usually means the killing of one person by another for merciful
reasons. The preceding cases do not involve euthanasia, because, in each case, death
would be initiated by the person him- or herself.
Second, a terminally ill patient who forgoes medical treatment doesn’t really
“commit suicide.” We should distinguish between (1) cases where an underlying
disease is incrementally leading to death and by choosing not to do everything
possible, the patient accepts death and (2) cases where a competent adult without
a terminal illness causes his or her own death. The second kind of case is appro-
priately called “suicide.” The Bouvia and McAfee cases are therefore best called
cases of assisted suicide. Neither Elizabeth Bouvia nor Larry McAfee had a terminal
disease, but they also could not easily kill themselves, hence they needed assistance.
One reason to make this distinction is that life insurance companies do not pay
benefits for suicides. Another reason is that in all states it is illegal to assist in
suicides.
Why didn’t Elizabeth Bouvia and Larry McAfee simply kill themselves? Surpris-
ingly, the answer is that it’s difficult to kill yourself painlessly, aesthetically, and
with certainty. When you’re disabled, it’s almost impossible to do so by yourself.
Misconceptions about Suicide
Whenever a suicide is botched, people infer ambivalence, but this is often mistaken.
Emergency medicine contains many stories of bizarre survivals.70 The hand holding
the gun wobbles a fraction of an inch and leaves the would-be suicide a drooling
zombie. Because drugs taken for courage also relax muscles and thus soften impact,
some jumpers survive falls from the Golden Gate Bridge. One jumper hit a parked
car, did not die, and did not lose consciousness.71
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Although suicide attempts by teenagers increased 300 percent between 1967
and 1982, only 1 in 50 succeeded.72 The elderly succeed one in three times. Women
attempt suicide more than men but succeed less. Men use violent means (such as
guns); women use drugs.
Attempted suicides present a grim picture. People take lorazepam and benzo-
diazepines in insufficient quantities to cause death, often ending up merely coma-
tose. In 1987, National Security Advisor Robert McFarlane took 35–45 10-mg tablets
of Valium. When he didn’t die, people inferred he didn’t want to die. An equally
plausible explanation is that he didn’t know how to kill himself. Even physicians
don’t. In 1985, physician Robert Rosier didn’t know how much morphine to give
his terminally ill wife to help her die.73
People using other methods may not die but awake in the ER (Emergency
Room). CO poisoning may not work because the car can stall or run out of gas;
the CO may not concentrate enough to produce death, so the person ends up with
half his former intelligence.
Slitting wrists in a warm tub is not easy: The cuts are painful and must be made
deep and in the right place. Nor is this method certain: In the time between uncon-
sciousness and death, the arm may move out of the water and the blood may coag-
ulate. One ER physician observes, “Most slashers just get a trophy: a claw hand.”
Some people who don’t kill themselves wake up with a nasogastric tube down
their throat, into which syrup of ipecac is pumped to induce vomiting. ER physi-
cians then inject saline solution and start gastric lavage—alternate flooding and
suctioning of the stomach—and then pump granulated charcoal to absorb remaining
toxins.
If they want to spare the feelings of others or be found in a dignified state,
suicides should avoid certain methods. A drug overdose not only decreases respi-
ration but also relaxes bowels and bladders. Jumping off a building or shooting
oneself in the head leaves a crushed body. Hanging is difficult to do correctly
because the neck may not break and the victim, kicking in agony as he or she
partially asphyxiates, may not die. Men who do die in this way are found with an
erection and may have lost control of their bladder and bowels.
Rationality and Competence
In Elizabeth Bouvia’s case, psychiatrist Nancy Mullen testified that because Eliza-
beth was suicidal, she could not rationally make decisions about her life. Mullen
said that she could conceive of no situation where people could make competent
decisions to take their own lives.74 Carol Gill, a professor of occupational therapy
who used a wheelchair, criticized the ACLU for backing “a handful of medical
experts” who found that Bouvia was competent.75
Mullen and Gill may have begged the question of rational suicide. A question
is begged when the answer is assumed to be true rather than proved. In these cases,
the question is whether a decision to die is irrational: whether it indicates misin-
formation or faulty reasoning. Just assuming that a decision to die is always irratio-
nal begs that question.
This is not to say that a decision to die is always rational. Elizabeth Bouvia may
have been depressed, and psychological tests might have shown this. But Mullen
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 41
and Gill did not base their arguments on such tests. They were not Elizabeth’s
therapists and were not treating her. Mullen and Gill reacted to the content of
Elizabeth’s decision rather than to psychological tests. Indeed, three psychiatric
professionals who actually tested Elizabeth found her competent.76
In America a patient is legally competent until proven otherwise and proven
so in a legal hearing. No patient can be held in a hospital against her will without
having been proven legally incompetent. In practice, hospitals sometimes break
such laws.
Autonomy
At the start of bioethics in the 1970s, autonomy fueled the patient rights movement.
Applied to the right to die, an autonomous person who has not been proved incom-
petent and who is terminally ill always has a right to end his or her life.
But not everyone glorifies autonomy in bioethics. Critics argued that Bouvia
and McAfee did not want to die because they made dramatic demands on public
institutions, “acting out” and pleading for attention. In such cases, critics argue,
physicians must not accede to wishes of unstable patients. Only fools would assist
every distraught patient who come to an ER wishing to die.
The Roman Catholic Church opposes autonomous suicide. In 1990, Father
Kevin O’Rourke argued that humans are not in control of their lives.77 O’Rourke
argued that God has a plan for each person and it never includes suicide.
One problem with uncritical acceptance of autonomy is the famous SUPPORT
study (Study to Understand Prognoses and Preferences for Outcomes and Risks
of Treatments). It discovered that competent people do not accurately predict what
they will later find unacceptable as quality of life.78 People who predicted that
they would rather die than go on a ventilator most often did not choose to die
but chose life on a ventilator. It’s one thing to say abstractly that one would “rather
be dead than live like that,” but when actually faced with death, most people
decide to live.
Moreover, in rehabilitation medicine there is the equally famous adaptation
effect, in which after six months or so, patients like Larry McAfee who were disabled
in accidents, adapt their views about acceptable quality of life. What they once
considered unacceptable then becomes acceptable. For most patients, it may take
six months or more for this effect to occur.
Supporters of assisted suicide argue that providing such assistance continues
good medical care, even if a patient is not terminally ill. When quality of life dimin-
ishes, the fact that a patient does not have a terminal disease is irrelevant. The real
issue is whether a quality of life is acceptable to the person who must endure it,
and that is an evaluative judgment that can be made only by that person.
If physicians ignore autonomy, patients can be flogged to death with unneces-
sary tubes, surgery, and radiation. Such barbaric end-of-life treatment differs little
from involuntary commitment of competent people in psychiatric wards.
So the key question was not whether Elizabeth Bouvia was demonstrably com-
petent or incompetent, but where the onus of proof should lie. For rugged individ-
ualists and Libertarians who abhor the growing powers of government and
physicians, this onus should be on those who would take away autonomy.
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42 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
As we shall see in Chapter 3, in 1990, the U.S. Supreme Court decided in its
Cruzan decision that no state may pass a law limiting the right of competent patients
to decline medical treatment, even if declining treatment would hasten death. Cru-
zan built on the Bouvia and McAfee decisions and was a victory for the right of
competent adults to control how they died.
Autonomy raises some questions about risks: Who is best qualified to assess
the danger of dying too soon? What degree of risk is acceptable? Who should
determine acceptability? How does the risk of dying too soon compare with the
risks entailed by alternatives?
Physicians usually believe that they are best qualified to assess risk, and they’re
right as far as statistical risk is concerned. But acceptable risk is evaluative as well
as statistical, and many patients want the right to make their own judgments about
what is acceptable risk.
When terminal patients make such evaluations, their concern is more than just
fear of pain. Derek Humphrey of the Hemlock Society has written, “It isn’t just a
question of pain. It is a question of dignity, self-control, and distress. If you can’t
eat, sleep, or read, and the quality of life is so bad, and there is a certainty that
you are dying, it is a matter of dignity” to be able to end your life.79
In order to evaluate acceptable risk, patients need information. Margaret Battin
holds that physicians rarely discuss options with dying patients.80 She believes that
patients’ informed consent should be sought not only for medical research but also
for ways of dying. Especially when experimental drugs and surgery are involved,
terminal patients should be informed about different outcomes and different ways
of dying so that they can choose the least worst death. Alas, few patients get such
information and are allowed to make such choices.
Anna Pou’s patients did not seem to ask to die. At least one of them seems to
have been oriented and alert and could have been asked. Maybe she thought asking
was moot, as no rescue was coming and conditions were worsening. Nevertheless,
this lack of consent is a serious charge against Dr. Pou.
Inadequate Resources and Poor Treatment
Although every decision to die is not irrational, some suicidal people suffer from
treatable depression. Patients who have experienced devastating injuries may want
to die. While in the throes of depression, these people do not understand how much
better they can later feel. Antidepressants can lift mood and should be given to all
nonterminal patients who wish to die.
A different clinical issue concerns relief of symptoms. One physician in pallia-
tive care always asks his patients, “What is the chief symptom that makes you want
to die now?”81 That answer is often not what outsiders predict. One patient suffered
obviously from air hunger but most missed going to a public park in his trailer, so
volunteers quickly arranged such visits. With good coverage, almost any symptom
can be controlled, including pain, air hunger, itchiness, fatigue, and boredom.
End-of-life care varies considerably across developed countries. A survey by a
charity ranked Britain best for such care, followed by Australia and New Zealand,
then the United States.82 One nagging worry is that some historians think that the
ultimate reason for the rise of Nazi Germany was economic. After losing World War
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 43
I, the Germans were made to pay huge war reparations, which caused great harm
to the German economy and created much ill will. Since World War II, and espe-
cially in the past decades, North America has experienced an unparalleled economic
boom. What will happen when times turn bad and families must choose between
grandma’s care and a child’s college tuition?
Most patients and families are shielded from the true costs of long-term cover-
age at the end of life. What might be truly dangerous is to give physicians incentives
to curtail care at the end of life while ethical bulwarks against physician-assisted
dying are weakened. That could easily become not just a wave but a tsunami, espe-
cially during a major depression and intergenerational war over who should pay the
medical costs of an aging population.
Opponents of legalization claim that physician-assisted deaths botch 25 percent
of cases in Holland and therefore it should be illegal.83 This is a strange argument,
because it complains about the “how to” part of the legalization. In other words,
physicians at present aren’t good enough to guarantee death.
Of course, death for some patients will not be easy. Some AIDS patients who
were IV drug users and who attempted suicide at dosages recommended by the
Hemlock Society had high tolerances to central nervous system depressants. Instead
of dying, they sometimes became comatose.
To avoid this possibility, the patient needed to ask a friend to be present to
possibly help at the end by attaching a large plastic bag over the patient’s head and
securing it with duct tape, such that the patient could suffocate to death. (Called
the “Exit Bag” by critic Nat Hentoff, this refers to the efficient, self-administered
form of it with Velcro straps that once could be ordered from the Hemlock Soci-
ety.84) The use of Exit Bags subjects friends to charges of murder. It leaves dying
patients faced with the dilemma of dying alone and botching the attempt or asking
a friend to be present, assist, and risk prosecution for assisting in suicide.
This is why Oregonian physicians may attend the deaths of terminal patients.
If something goes wrong, they can adjust medications or deal with unexpected
complications. In short, this argument is not an argument for no physician-assisted
dying, but for more of it.
Social Prejudice and Physical Disabilities
For disability advocate Paul Longmore, who was a ventilator-dependent professor
with quadriplegia, Bouvia’s case shows how a prejudiced system destroys the inde-
pendence of disabled people.
By creating intolerable conditions, society paints people with disabilities into a
corner, leaving them with only one autonomous decision consistent with their for-
mer selves: to decide to die. Professionals who keep them passive and dependent
make every other decision for them. In Longmore’s words:
Given the lumping together of people with disabilities with those who are termi-
nally ill, the blurring of voluntary assisted suicide and forced “mercy” killing, and
the oppressive conditions of social devaluation and isolation, blocked opportunities,
economic deprivation, and enforced social powerlessness, talk of their “rational” or
“voluntary” suicide is simply Orwellian newspeak. The advocates of assisted suicide
assume a nonexistent autonomy. They offer an illusory self-determination.85
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44 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
To see Bouvia or McAfee simply as cases of a right to die is to miss a much
bigger issue. Elizabeth Bouvia wanted to die because of centuries of prejudice
against people who are physically disabled—prejudice that society expresses daily—
prejudice that idealizes youth, beauty, sex, athleticism, fitness, and wealth.
Longmore despises films that encourage disabled people to view killing them-
selves as a rational response to their miserable conditions. He cites Annie Hall,
Elephant Man, and especially Whose Life Is It Anyway? He claims that watching the
latter depressed Elizabeth Bouvia. He could have also cited the 2004 film Million
Dollar Baby.
Longmore sees Bouvia as one who slipped through the cracks of an impersonal
system. She was tragic not because of her physical situation but because of her social
situation. Even as a hospitalized patient, she remained sadly alone. It was this
aloneness that underlay her fierce desire to tear herself away from life.
In 1990, the Americans with Disabilities Act (ADA) became federal law. This
legislation represents one of the most sweeping changes in American life and was
intended to integrate Americans with disabilities into normal life. Despite it being
passed over two decades ago, many institutions do not comply with it because of
its high costs.
Raising the issue of inadequate resources puts physicians in an awkward place.
On one hand, they do not want to torture disabled people who want to die. On
the other hand, they do not want to kill disabled people because a prejudiced soci-
ety is too cheap to help their patients.86
As a result of childhood polio, Professor Longmore’s arms were paralyzed, his
spine was curved, and he used a ventilator as much as 18 hours a day.87 As a pro-
fessor of history at San Francisco State University, his success would have been
impossible without his ability to live on his own, which required home health care
aides. Fortunately, California’s generous Medicaid program paid for his domestic
aides ($15,000 a year) and Medicare disability paid for his ventilator ($12,000 a
year). Had he lived in Georgia, Longmore, too, might have wanted to die, where
he would not have been able to find a group home and where, as he said, “proba-
bly would have found my life unendurable.”
Longmore maintained that Elizabeth Bouvia’s problems resulted in part because
she did not receive her maximum payments and because her county is notorious
for its stingy benefits to disabled people.
When a disabled person takes a job or marries, officials reduce his or her ben-
efits. California’s In-Home Supportive Services program allowed Elizabeth to man-
age her own life at home only while she was single; when she married, however,
her husband was expected to care for her. Given these circumstances, it is no
wonder that Bouvia later divorced or that she did not complete her training for a
job. Longmore concludes:
This is a woman who aimed at something more significant than mere self-sufficiency.
She struggled to attain self-determination, but she was repeatedly thwarted in her
efforts by discriminatory actions on the part of the government, her teachers, her
employers, her parents, and her society. Contrary to the highly prejudiced view of
the appeals court, what makes life with a major physical disability ignominious,
embarrassing, humiliating, and dehumanizing is not the need for extensive physical
assistance, but the dehumanizing social contempt toward those who require such aid.
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 45
University of Alabama at Birmingham professor Russ Fine believes that McAfee’s
desire to die also resulted from his inadequate care. Public officials control costs by
requiring patients to live in the most cost-effective facilities, but McAfee said that if
he couldn’t live in his own apartment, he would rather die. According to Fine, McA-
fee “was very vocal about inferior nursing care, which was the rule, not the excep-
tion, in these marginal health-care facilities that had accepted these contracts.”88
Once, Fine had brought McAfee to a Thanksgiving dinner and the two were
watching a televised football game while waiting for McAfee’s family to arrive for a
visit. Fine was drowsing in an armchair when he suddenly realized that McAfee had
stopped breathing. Aides soon got Larry breathing and Fine then saw tears streaming
out of his eyes. “He didn’t really want to die,” Fine concluded. “He was just terrified.”89
It should be noted that McAfee, like Bouvia, wanted to work, but getting paid
for working would have made him ineligible for publicly funded assistance in hous-
ing or for Medicaid.
During the past decades, people with disabilities increasingly resisted discrim-
ination, asserting their right to 24-hour-a-day attendants, public transportation, and
good housing.90 They asserted that they had a condition, not an illness. For them,
“Disability Culture” is not bad but a source of identity. Indeed, the disabled com-
munity is the only minority that one may join at any time.
People with disabilities demonstrated against Princeton bioethicist Peter Singer,
whose views on quality of life, they fear, will allow society to easily kill the disabled.
They hectored the director of Compassion and Choices, Faye Girsh, for being sym-
pathetic to the assisted death of nonterminal patients. Girsh testified on behalf of
Canadian Robert Latimer, who in 1993 killed his 12-year-old daughter who was
afflicted with cerebral palsy. Disability groups accused her (and most bioethicists)
of siding with rich autonomous elites.
Cases such as those of Bouvia and McAfee suggest that we often give severely
disabled people three grim choices: to become a burden on their families, to live
miserably in a large public institution, or to kill themselves. Getting better access
to public facilities for people with disabilities and especially not allowing young
people with disabilities to languish in nursing homes for the elderly have become
major issues about justice in medicine.91
Is Killing Always Wrong?
Arguments often either claim that something is directly, or intrinsically, wrong or indi-
rectly wrong because it leads to bad consequences. One direct argument against physi-
cian-assisted dying is that such actions wrongly kill vulnerable humans. It is always
wrong to kill humans under all circumstances, and just because a human is dying, no
exceptions can be made. Evil occurs when one human ends the life of another.
This argument does not claim that what is wrong about killing is that it can
become uncontrollable after a few justified cases, for that would be appealing to a
slippery slope. Instead, it claims that all killing is intrinsically wrong, no matter what
the circumstances.
Whether or not an afterlife or God exists, once a person is dead, he or she’s
not coming back. Without an afterlife, this life is all a person has, and to take it
away is to take away all values because the valuer is gone.
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46 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
For many decisions, such as transplanting a kidney, if mistakes occur, there is
backup, for example, hemodialysis. But mistakes in killing have no backup. Once
a person is dead, that’s it.
For this reason, killing must not be taken lightly. Life must not be cheapened.
The ultimate power on earth is to take away life. All life should be valued, not just
some in the right circumstances. Life is precious, no matter how low its quality. Of
all values in medicine, this one must reign supreme.
The most ancient justification of the direct argument is based on religious meta-
physics: that God exists, that Scripture correctly reveals his laws for humans, and
that one such law is for humans never to kill another human. Based on this view,
some Christians and some orthodox Jews prefer death to self-defense, refuse war
and the draft, and will never kill.
One should note that Scripture really bans “unjustified” killings, and hence
allows just wars and the death penalty for murderers. The question here concerns
whether helping terminally ill patients die is “unjustified killing.” After all, God
presumably allows us to get terminal illnesses, so in one sense, dying for each of
us is His Will.
More important, the background conditions need to be examined about the
rule against killing. In the past, most people have wanted to live as long as possible,
but that fact is less true today. Why? Because medicine has cured acute diseases
and left us with the disability and dysfunction that come with chronic diseases.
Now consider the rule against killing and physician-assisted dying. When you
help me accomplish what I want to do, you do a good thing, and morality encour-
ages you to help me. When you prevent me from doing what I want to do, you hurt
my interests, and your actions may be immoral. Whether or not dying assisted by
physicians is good or bad may depend, not on what has been traditionally been
judged moral or immoral but on the wishes of the patient.
Of course, critics can object that helping me do what I want to do is not always
a good thing, such as if I want to steal my neighbor’s car. And, they say, helping
people die is immoral.
But why should we allow this objection? Why should we accept the underlying
premise that “helping dying people die is immoral” unless some further reason is
given? To simply assert this as an objection is to beg the question. It is not an
argument against a position to assume that it is wrong.
Killing versus Letting Die
For several decades, bioethicists have debated whether killing differs from letting
die. A 1997 survey by the American Hospital Association found that 70 percent of
deaths in hospitals involve some decision by a physician or relative to cease treat-
ment.92 However, intentional termination of a dying patient’s life is still illegal in
most states.
A leading physician in medical ethics once admitted, “I have had occasion to
give a patient pain medication we both knew would shorten her life.”93 Does this
differ from killing her?
In palliative care, physicians practice terminal sedation, which stands on the
doctrine of double effect where the physician must not intend death but merely the
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 47
relief of pain. Does such sedation differ from killing the patient? Is the difference
only semantic?
In 1975, philosopher James Rachels attacked the distinction between active
and passive euthanasia in a famous article in the New England Journal of Medi-
cine.94 Rachels argued that this distinction, though still dominant in modern med-
icine and law, has no inherent moral value, and when it is taken for anything
more than a pragmatic rule, it leads to decisions about death based on irrelevant
factors.
Rachels’s logic cuts two ways: First, letting a vegetative patient die is just as
bad (or good) as killing him or her; second, killing a vegetative patient is just as
good (or bad) as allowing him or her to die. There is nothing moral or immoral in
the act of passive or active euthanasia itself; instead, morality or immorality is
determined by motives and results in the context of that act. Focusing on whether
an act is active or passive, he argued, may confuse our judgments, leading us to
think that passively allowing people to die slowly and horribly is morally superior
to actively bringing about a quick, painless death.
Rachels caused controversy. Is intending death by removing a respirator equiv-
alent to suffocating a patient with a pillow? If a patient is allowed to die, isn’t that
patient killed by the disease? But if someone acts directly to bring about dying, isn’t
that human agent the cause of death? One critic argued:
What is the difference between merely letting a patient die and killing that patient?
Does it depend upon activity or passivity? Does it depend on an agent’s intentions?
I think that neither of these factors are relevant. What is relevant is the cause of
death. When the cause of death is the underlying disease process, the patient is
simply allowed to die.95
So after Hurricane Katrina, diseases didn’t kill Anna Pou’s patients, Anna
Pou did.
Philosopher Bonnie Steinbock argues that Rachels confuses ceasing treatment
with killing or “intentionally letting die.”96 The former may stem from rights of
protection against unwanted interference and medical standards of appropriate
treatment. The latter connotes a different motive, wanting a life to end soon.
In support of Rachels, it can be argued that in practice the line between active
and passive is hard to draw. In some cases, not acting can be considered active.
This does not entail that killing and assisted dying do not differ; as Jean Davies
argued, just as “rape and making love are different, so are killing and assisted
suicide.”97
Relief of Suffering
One of the most persuasive arguments for physician-assisted dying is the appeal to
mercy. Anna Pou probably saw panicked patients suffering in terrible heat, dehy-
dration, and discomfort. Observing another human being in untreatable pain howl-
ing like a wounded animal should move us to tears. We do this for our pets; why
can’t we do so for humans? Moreover, the suffering of terminal patients is not
confined to physical pain, as bad as that is; it also involves helplessness, stress,
exhaustion, and terror.
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48 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
A big issue here has to do with relief of pain. Is it possible to relieve all pain
and make dying patients completely comfortable? Cicely Saunders, who founded
St. Christopher’s Hospice in London, said her dying patients never needed to suffer
pain. She gave them Brompton cocktails, a powerful brew of morphine, heroin,
alcohol, and cocaine.
On the other hand, Derek Humphrey of the Hemlock Society argued that “it
is generally agreed that 10 percent of pain cannot be controlled. That is a lot of
people.”98 Margaret Battin and Timothy Quill acknowledge that even with excellent
palliative care, 2–5 percent of terminal patients experience pain that is uncontrol-
lable.99 It is also true that not everyone experiences pain in the same way, and a
condition that would be acceptable to some might be intolerable to others.
A second question concerns what the cost of relief might be and what costs are
acceptable. In this context, we are not talking about financial costs: The issue is the
cost to the patient’s well-being. Powerful narcotics such as Brompton cocktails numb
consciousness and make patients mostly unconscious.
Dying patients must make a trade-off between consciousness and relief of pain,
and not every patient considers that trade-off acceptable. For some patients, being
conscious and able to talk to relatives and friends is more important than avoiding
pain. Here again, autonomy becomes relevant. What counts as a benefit or a harm
must be defined within each patient’s own value system, and who else but patients
can make such judgments?
Ethics and medicine commonly distinguish between pain and suffering. Pain is
physical; suffering is a broader and more personal matter. Pain covers one aspect of
suffering, but relieving pain does not necessarily relieve suffering.
Pieter Admiraal, a physician and one of the leaders of assisted dying in the
Netherlands, agrees that uncontrollable pain is rarely the only reason for death:
There is severe dehydration, uncontrolled itching and fatigue. These patients are
completely exhausted. Some of them can’t turn around in their beds. They become
incontinent. All these factors make a kind of suffering from which they only want
to escape. . . .
And of course you are suffering because you have a mind. You are thinking
about what is happening to you. You have fears and anxiety and sorrow. In the end,
it gives a complete loss of human dignity. You cannot stop that feeling with medical
treatment.100
In Dr. Pou’s case, one could argue that her nine patients were suffering badly
and it was unlikely that they would be saved. Gravely ill with many medical prob-
lems, lying in hot, humid rooms with no fresh water—it is hard to imagine a more
uncomfortable place to be.
Slippery Slopes
One of the most famous ideas in ethics is the slippery slope, also called the “thin
edge of the wedge argument.” It figures prominently in ethical debates, as we saw
in decisions by the U.S. Supreme Court.
Two kinds of slippery slopes exist: empirical and conceptual.101 Claims about
empirical slopes assert that taking the first step unleashes something bad in human
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 49
nature. As Leo Alexander says, “The destructive principle, once unleashed, is bound
to engulf the whole personality and to occupy all its relationships.”102
A conceptual slippery slope asserts that once a small change is made in a moral
rule, other changes will soon logically follow. Why? Because reason demands consistency
in treating similar cases similarly. Alexander also claims this kind of slope occurred:
The beginnings at first were merely a subtle shift in emphasis in the basic attitude
of the physicians. It started with the acceptance of the attitude, basic in the eutha-
nasia movement, that there is such a thing as life not worthy to be lived. This
attitude in its early stages concerned itself merely with the severely and chronically
sick. Gradually the sphere of those to be included in this category was enlarged to
encompass the socially unproductive, the ideologically unwanted, the racially
unwanted and finally all non-Germans. But it is important to realize that the
infinitely small wedged-in lever from which this entire trend of mind received its
impetus was the attitude of the nonrehabilitable sick.103
With conceptual slopes, once physicians kill one kind of patient because qual-
ity of life makes “life not worthy to be lived,” they not only can but will use the
same reasoning to kill in similar cases.
Consider this example of a conceptual slope: first we will allow abortion of a
fetus because of Down syndrome and then we will let a newborn with Down syn-
drome die. Notice that in conceptual slopes, it is always the demand of reason to treat
similar cases similarly that expands the initial change.
Another example: at the time of the Karen Quinlan case in 1976 (see next chapter),
disability advocate James Bopp said that if you “accept quality of life as the standard,”
then “first you withdraw the respirators, then the food and then you actively kill peo-
ple. It’s a straight line from one place to the others.”104 Bioethicist Daniel Callahan
then said that the logic of the case for euthanasia would inevitably lead to its extension
far beyond terminally ill competent adults. If relief of suffering is critical, Callahan
said, “[W]hy should that relief be denied to the demented or the incompetent?”105
As an example of an empirical slope, consider Michael Swango, charged and
convicted in 2000 with killing three patients in New York State. Upon investigation,
Swango was found to have killed at least 60 patients, possibly hundreds, starting
in Zimbabwe in the early 1980s and moving around the world. His diary revealed
that he killed for the thrill of the power to kill and “the sweet, husky, close smell
of an indoor homicide.”
Critics fear that such malice will be unleashed with legal, physician-assisted
deaths. Law professor Yale Kamisar says, “Not all people are kind, understanding,
and loving.”106
After four patients under her care died suspiciously, Anna Pou was charged
with second-degree murder.107 The Louisiana Attorney General alleged that they
died of overdoses of morphine and midazolam. Although the grand jury declined
to indict Dr. Pou, it may have done so in part because other physicians abandoned
the hospital while she heroically stayed, because the four patients might well have
died anyway, and because she seemed compassionate. But it still may be true that,
given the changing ethical climate about physician-assisted killing in America, she
felt freer to do this than she would have decades ago. To that degree, and under
those circumstances, perhaps some slippage has occurred.
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50 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
Contrasts may be made among the two kinds of slope claims. The empirical
claim is a prediction about consequences if some moral change occurs, whereas the
conceptual claim refers to a linkage in reasoning once particular premises are
accepted. Where the empirical slope says one small change will create many others
because of something bad in humans, the conceptual slope says the same kind of
change can occur because of something higher—reason’s need to treat similar cases
similarly.
In 1975, columnist Nat Hentoff predicted that the Quinlan decision would bring
on an empirical slippery slope. In 1992, he felt vindicated in describing Jack Kevork-
ian’s actions and the decriminalization of physician-assisted dying in the Netherlands,
all of which he called a “reckless cheapening of life.”108 Yet it took 22 years after the
Quinlan decision before the first terminal patient legally died with the help of a phy-
sician in Oregon in 1998, and the Schiavo case (see next chapter) showed us how far
we are from readily accepting the deaths of incompetent, comatose patients.
In Oregon, physician-assisted deaths average less than 100 a year. In Holland,
a real expansion of cases occurred. Teenagers and psychiatric patients are killed
with their consent, as well as newborns suffering with terminal conditions. Callah-
an’s prediction has come true, but the Dutch regard it not as a descent but as a
moral elevation: The Dutch agree that if it’s justified to kill a consenting 64-year-old
with terminal cancer, why isn’t it also justified to kill a consenting 16-year-old with
terminal cancer?
Physicians’ Roles, Cries for Help, and Compassion
Some physicians argue that “physicians should not kill” and should always be heal-
ers. This statement assumes incorrectly that physicians can always heal. That is
false. Everyone will eventually die. No human has ever been “healed” of death. To
simplistically assert that “physicians should not kill” begs the key question at issue.
More than one way exists to be a compassionate physician to dying patients.
A good physician makes sure his or her patient isn’t depressed and doesn’t choose
death because of treatable symptoms. The short interviews by Dr. Kevorkian and
his layperson sister, of his patients who arrived in town the day before they were
killed, did not meet the highest standards of humanism in medicine.
Mistakes and Abuses
Physicians make mistakes. Surgeon Christiaan Barnard recalled a young woman
with ovarian cancer who repeatedly begged him to kill her painlessly with mor-
phine.109 Being aware that she was terminal—and hearing her screams at night—Bar-
nard decided to help her. When he came into her room with a syringe loaded with
morphine, she was quiet, and he thought that she was in too much pain even to
scream. Then he realized that she was semiconscious, beyond pain, and changed
his mind. The next morning, she felt better; soon she was in remission and lived
another few months.
As for Anna Pou, her role drew mixed reactions. On one hand, if it was a triage
situation, she acted mercifully. But what if it wasn’t a true situation of triage, because
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 51
unknown to her, help was on the way? What if the definition of a “triage situation”
is more subjective than it first appears?
What if she had waited one more day? Some of her patients would have lived.
In Holland, critics claim that physicians often misdiagnose “intractable and unbear-
able” suffering.
Let us put this point differently. In bioethics, many discussions begin with a
phrase like “If a patient has a terminal illness . . . .” Notice the word “if.” In pre-
sumably terminal illnesses, few claims are absolute until the patient’s last days.
Before then, how “terminal”—how close to death—the patient is may depend on
many factors that are not easy to assess: the patient’s attitude, the family’s attitude,
the attitude of staff members, the quality and level of care, and so on. Some termi-
nal patients were misdiagnosed and recovered. Physician-assisted dying allows a
mistaken diagnosis to become a death sentence.
Israeli physician Seymour Glick once revealed a dirty little secret of medicine:
Every physician has some patients whom he dislikes. Some illnesses are messy,
some families are intolerable, and some physicians make mistakes and harm
patients. In such cases, physicians want the patients to “go away.”
Cries for Help
Joanne Lynn, a physician who cared for 1,000 hospice patients, believes that most
terminal patients who request physician-assisted death are actually seeking atten-
tion, control, dignity, relief of symptoms, or relief from depression.110
Terminal patients are often bored, depressed, and lonely: people avoid them.
This is why it is a duty to visit dying patients. People who once did important
work now have nothing to do. People who never watched television now watch it
all day long.
Bioethicist Margaret Pabst Battin and physician Timothy Quill argue that phy-
sician-assisted dying should be an option of last resort after all resources are
exhausted of excellent palliative care.111 They stress that such physician-assisted
dying should not substitute for great palliative care.
FURTHER READING AND RESOURCES
Nonterminal Patients Who Want to Die:
“Elizabeth Bouvia: 10 Years Later,” 60 Minutes Special, www.cbs.com.
Pat Milmore McCarrick, “Active Euthanasia and Assisted Suicide,” Scope Note 18, Kennedy
Institute of Ethics Journal, no. 1 (March 1992).
James Rachels, The End of Life, Oxford, U.K.: Oxford University Press, 1986.
Physician-Assisted Suicide:
Sheri Fink, Five Days at Memorial, Crown, New York, NY, 2013.
Kathleen M. Foley and Herbert Hendin, eds., The Case Against Assisted Suicide: For the Right
to End-Of-Life Care, Johns Hopkins University Press, 2002.
Timothy Quill and Margaret Pabst Battin, eds., Physician-Assisted Dying: The Case for Palliative
Care and Patient Choice, Baltimore, MD: Johns Hopkins Press, 2004.
pen07945_ch02_019-056.indd 51 9/8/16 9:51 AM
www.cbs.com
52 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
DISCUSSION QUESTIONS
Nonterminal Patients Who Want to Die:
1. Can decisions be justified by their outcomes? What if, when they had the oppor-
tunity, Bouvia or McAfee had killed themselves? Would that mean the physi-
cians who prevented their earlier deaths were wrong?
2. How do you know when you’ve really properly treated depression and “debil-
itating symptoms” when a patient has sustained a terrible accident or is dying?
Isn’t that a Catch-22, where you only know you’ve successfully treated it when
the patient decides to live?
3. Is the right to die glamorized in movies? What if the paralyzed fighter, portrayed
by actress Hillary Swank in Million Dollar Baby, had to suffocate slowly for 20 min-
utes in dying? What if her reflexes kicked in and her body resisted? She lost bowel
and bladder control? It didn’t work and she was left comatose or brain-damaged?
4. Right now, society seems to exalt young bodies, sexiness, athleticism, and
wealth. Do these images set young people up for failure? As most people can’t
have these traits, what message do these images send to people who are the
opposite? Is this a good set of values to live by?
5. How do diversity and autonomy go together or not? Will some ethnic groups
be more interested in autonomy in medicine than others? Is autonomy more
meaningful to some than others? Should autonomy be defined as a check or
balance against the power of the medical establishment over the individual?
Physician-Assisted Dying:
1. If you were Anna Pou and believed no rescue was coming for your nine patients,
would you have done the same?
2. Almost all the patients who died in Oregon and Washington were white and
educated. Why do you think other kinds of people didn’t use the law?
3. If physicians were on salary rather than being paid per procedures, would more
terminal patients be killed more quickly?
4. Do views about physician-assisted killing depend on whether you think humans
are basically selfish and sinful or good and compassionate?
5. Does the doctrine of terminal sedation (double effect) make sense? Can anyone
really know what is in someone else’s mind?
NOTES
1. Associated Press, October 16, 1983.
2. Robert Steinbock and Bernard Lo, “The Case of Elizabeth Bouvia: Starvation, Suicide or Problem
Patient?” Archives of Internal Medicine 146 (January 1986), p. 161.
3. Quoted in George Annas, “When Suicide Prevention Becomes Brutality: The Case of Elizabeth
Bouvia,” Hastings Center Report 14, no. 2 (April 1984), p. 20.
4. Associated Press, in Birmingham Post-Herald, December 14, 1984, p. A2.
5. Quoted in Arthur Hoppe, San Francisco Examiner, December 20, 1983.
pen07945_ch02_019-056.indd 52 9/8/16 9:51 AM
Chapter 2 Requests to Die: Terminal and Nonterminal Patients 53
6. Steinbock and Lo, “The Case of Elizabeth Bouvia,” p. 161.
7. Bouvia v. County of Riverside, California Superior Court, December 16, 1983.
8. Richard Scott, in “Patient’s Suicide Wish Troubles Hospital MDs,” American Medical News, Janu-
ary 20, 1984, p. 5.
9. Arthur Hoppe, San Francisco Examiner.
10. Annas, “When Suicide Prevention Becomes Brutality,” p. 46.
11. George Annas, “Elizabeth Bouvia: Whose Space Is This Anyway?” Hastings Center Report 16, no. 2
(April 1986), p. 20.
12. Steinbock and Lo, “The Case of Elizabeth Bouvia,” p. 162.
13. George Annas, “Elizabeth Bouvia,” pp. 24–25.
14. Derek Humphrey and Ann Wickett, The Right to Die: Understanding Euthanasia, Harper and Row,
New York, 1986, p. 150.
15. Paul Longmore, “Elizabeth Bouvia, Assisted Suicide, and Social Prejudice,” in Issues in Law and
Medicine, no. 2 (Fall 1987), p. 158.
16. The hospital’s rationale in its brief to Judge Deering is quoted in Annas, “Elizabeth Bouvia,” p. 24.
17. Bouvia v. Glenchur, Los Angeles Superior Court, California Reporter 225 (1986), pp. 296–308.
18. Bouvia v. Superior Court (Glenchur), California Reporter 297, California Appellate 2 District, 1986.
19. In Bartling v. Superior Court (1984), California court recognized the constitutional right of a competent
patient to refuse life-sustained treatment, as it did in a 1983 criminal case, Barber v. Superior Court. A
Florida court in 1978 recognized a competent patient’s right to remove a life-sustaining device in Satz
v. Perlmutter 362 So.2nd 160. Thanks to Bonnie Steinbock and Alicia Ouellette for these references.
20. Jeff Wilson (AP), “Precedent-Setter Lives On after Plea to Die,” Indianapolis Star, December 19, 1993,
p. H7.
21. Elaine Woo, “Obituary: Harlan Hahn; USC Professor Fought for Disability Rights, Sued University
to Improve its Access,” May 10, 2008, Los Angeles Times.
22. B. D. Colen, “His Life, to Take or Not,” Newsday, September 25, 1989, pp. 5–19.
23. Susan Schindehette and Gail Wescott, “Deciding Not to Die,” People, January 18, 1993, p. 86.
24. Ibid.
25. Russ Fine, UAB Report, September 4, 1992, p. 4.
26. Ibid.
27. Associated Press, “Thousands Retiring without Social Security,” February 16, 1993.
28. Russ Fine, personal communication to author, May 16, 1994.
29. Egan, Nicole Weisensee,”Terminally Ill 29-Year-Old Woman: Why I’m Choosing to Die on My Own
Terms”. People October 6, 2014. http://www.people.com/article/Brittany-Maynard-death-with-dignity-com-
passion-choices
30. Slotnik, Daniel E. (November 3, 2014). “Brittany Maynard, ‘Death With Dignity’ Ally, Dies at 29”.
The New York Times.
31. https://www.compassionandchoices.org/2014/11/18/brittany-maynards-mother-responds-to-vatican-
other-critics-of-her-daughters-end-of-life-choice/
32. Quotations are from Phaedo, in E. Hamilton and H. Cairns, eds., Plato: The Collected Dialogues,
Princeton University Press, Princeton, NJ, 1961.
33. Epictetus, Dissertations, 1.9, p. 16. Quoted by James Rachels, “Euthanasia,” in T. Regan, ed., Matters
of Life and Death, 3rd ed., McGraw-Hill, New York, 1993, p. 35.
34. Seneca, De Ira, quoted by Rachels, “Euthanasia.”
35. Jean Paul Sartre, Existentialism Is a Humanism, Philosophical Library, New York, 1947.
36. Frederick Russell, The Just War in the Middle Ages, Cambridge University Press, Cambridge, England,
1975.
37. Quoted in James Gutman, “Death and Dying in Western Culture,” Encyclopedia of Bioethics 1, Free
Press, New York, 1978, p. 240.
38. Baruch Spinoza, Ethics, William White and Amelia Stirling, trans., Hafner, New York, 1949.
pen07945_ch02_019-056.indd 53 9/8/16 9:51 AM
http://www.people.com/article/Brittany-Maynard-death-with-dignity-com-passion-choices
http://www.people.com/article/Brittany-Maynard-death-with-dignity-com-passion-choices
https://www.compassionandchoices.org/2014/11/18/brittany-maynards-mother-responds-to-vatican-other-critics-of-her-daughters-end-of-life-choice/
https://www.compassionandchoices.org/2014/11/18/brittany-maynards-mother-responds-to-vatican-other-critics-of-her-daughters-end-of-life-choice/
54 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
39. Quoted in Derek Humphrey and Ann Wickett, The Right to Die: Understanding Euthanasia, Harper
and Row, New York, 1986, pp. 8–9.
40. David Hume, “On Suicide” (1755), in Eugene Miller, ed., Collected Essays of David Hume, Liberty
Classics, Indianapolis, IN, 1986.
41. Ibid.
42. Immanuel Kant, “On Suicide” (1755–1780), Lectures on Ethics, L. Enfield, trans., Harper and Row,
New York, 1963, pp. 148–154.
43. Ibid.
44. Immanuel Kant, The Metaphysical Principles of Virtue, J. Ellington, trans., Bobbs-Merill, Indianapolis,
IN, 1959, p. 84.
45. John Stuart Mill, On Liberty (1859), Appleton-Century-Crofts, New York, 1974.
46. Quoted in Humphrey and Wickett, The Right to Die, p. 16.
47. Leo Alexander, “Medical Science under Dictatorship,” New England Journal of Medicine 42 (July 14,
1949), pp. 39–47.
48. Robert Jay Lifton, The Nazi Doctors, Basic Books, New York, 1986.
49. J. C. Wilke, Assisted Suicide and Euthanasia: Past and Present, Hayes Publications, Cincinnati, Ohio,
1998, p. 9. I am indebted to Stephen W. Poff, M.D., for this reference and for points made in this
paragraph.
50. Johannes J. M. van Delden et al., “The Remmelink Study: Two Years Later,” Hastings Center Report
23, no. 6 (November–December 1993), p. 24.
51. http://www.nytimes.com/1986/09/21/magazine/german-doctors-and-the-final-solution.html?
pagewanted=all
52. Tara Burghart, Associated Press, “1 in 18 Opt Out of Assisted Suicide,” August 18, 2005, Birmingham
News, p. A11.
53. Veronica English et al., “Ethics Briefings,” Journal of Medical Ethics, 32 (2006), pp. 371–372.
54. Isabel Wilkerson, “Physician Fulfills a Goal: Aiding a Person in Suicide,” New York Times, June 7,
1990.
55. Susan Okie, “Dr. Pou and the Hurricane: Implications for Patient Care during Disasters,” New
England Journal of Medicine 358, no. 1 (January 3, 2008), pp. 1–5.
56. Susan Okie, “Dr. Pou and the Hurricane,” p. 1.
57. Alto Charo, quoted by Susan Okie, “Dr. Pou and the Hurricane,” p. 4.
58. Sheri Fink, “Deadly Choices at Memorial,” New York Times Magazine, August 27, 2009. Copublished
with “ProPublica: Journalism in the Public Interest.” See also, Sheri Fink, Five Days at Memorial,
Crown, New York, 2013.
59. Susan Tolle, “Care of the Dying: Clinical and Financial Lessons from the Oregon Experience,” Annals
of Internal Medicine 128, no. 7 (April 1, 1998).
60. Ibid.
61. Ezekiel Emanuel and Margaret Battin, “What Are the Potential Cost-Savings of Legalizing Physi-
cian-Assisted Suicide?” New England Journal of Medicine 339 (1998), pp. 167–172.
62. Susan Tolle et al., “Oregon’s Low In-Hospital Death Rates: What Determines Where People Die and
Satisfaction with Decisions on Place of Death?” American College of Physicians- American Society
of Internal Medicine (1999), pp. 681–685.
63. J. Prokopetz and L. Lehmann, “Redefining the Physicians’ Role in Assisting Dying,” New England
Journal of Medicine 367, no. 2 (July 12, 2012), p. 98.
64. Seventh Annual Report on Oregon’s Death with Dignity Act, Office of Disease Prevention and Epide-
miology, Department of Human Services, State of Oregon, March 10, 2005, 800 N.E. Oregon Street,
Portland, OR 97232.
65. Dave Parks, “Study: Ill Oregonians Refuse Food to Die, Rejecting Suicide Law,” Birmingham News,
July 24, 2003, p. A12.
66. Judge Says 14th Amendment Guarantees Right to Die,” NBC News, May 17, 1994, https://archives
.nbclearn.com/portal/site/k-12/flatview?cuecard=3283
67. “Excerpts from Court’s Decision,” New York Times, June 27, 1997, p. A18.
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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 55
68. Ludwig Edelstein, Ancient Medicine: Collected Essays of Ludwig Edelstein, O. Temkin and L. Temkin,
eds., Johns Hopkins University Press, Baltimore, MD, 1967.
69. G. E. R. Lloyd, Hippocratic Writings, J. Chadwick and W. N. Mann, trans., Penguin, New York, 1950,
p. 13.
70. Art Kleiner, “Life after Suicide,” High Wire, Summer 1982, p. 30.
71. Tad Friend, “Jumpers,” New Yorker, October 13, 2003.
72. H. Hendin, “Suicide in America,” Miami News, August 30, 1982, p. B1.
73. T. Woody, “Was His Act of Mercy Also Murder?” New York Times, November 7, 1988.
74. Quoted in Humphrey and Wickett, The Right to Die, p. 152.
75. Ibid., p. 155.
76. Ibid., p. 154.
77. Kevin D. O’Rourke, “Value Conflicts Raised by Physician-Assisted Suicide,” Linacre Quarterly 57, no.
3 (August 1990), pp. 38–49.
78. SUPPORT Principal Investigators, “A Controlled Trial to Improve Care of Seriously Ill Hospitalized
Patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment
(SUPPORT), Journal of the American Medical Association 274 (1995), pp. 1591–1598.
79. Quoted in Barnard White Stack, “Doctors Divided Over the Very Ill,” Pittsburgh Post Gazette, June 11,
1990.
80. Margaret Battin, “The Least Worst Death,” Hastings Center Report 13, no. 2 (April 1983), pp. 13–16.
81. John Shuster, talk at UAB Medical School, August 14, 1995.
82. “Federal Judge Says Ban on Suicide Aid is Unconstitutional,“ The Economist, July 17, 2010, p. 65.
83. Timothy Egan, “Assisted Suicide Comes Full Circle” NY Times Oct. 26, 1997.
84. Nat Hentoff, “The Coat Hanger of Assisted Suicide,” Washington Post, December 12, 1997.
85. Paul Longmore, column in Electric Edge, January/February 1997.
86. Paul Longmore, “Elizabeth Bouvia, Assisted Suicide, and Social Prejudice,” in Issues in Law and
Medicine 2, no. 2 (Fall 1987), p. 158.
87. “Paul Longmore, Advocate for the and Disabled, Dies,” http://www.npr.org/sections/health-
shots/2010/08/11/129127432/paul-longmore-historian-and-advocate-for-disabled-dies
88. Fine, UAB Report, p. 12.
89. Ibid., p. 4.
90. Douglas Martin, “Disability Culture: Eager to Bite the Hands That Would Feed Them,” New York
Times, June 1, 1997, p. A1.
91. Tara Lagu et al., “The Axes of Access—Improving Care for Patients with Disabilities,” New England
Journal of Medicine 370, no. 19 (May 8, 2014), pp. 1847–1852; Melissa Marino, “Too Young to Be
Forgotten,” Monash University Magazine, June 2014, p. 1014.
92. Gina Kolata, “ ‘ Passive Euthanasia’ in Hospitals Is the Norm, Doctors Say,” New York Times, June
28, 1997, p. A1.
93. Christine Cassell, quoted in Michael Specter, “Suicide Device Fuels Debate,” Washington Post, June
8, 1990.
94. James Rachels, “Active and Passive Euthanasia,” New England Journal of Medicine 29 (January 9, 1975),
pp. 78–80.
95. Baruch Brody, “Ethical Questions Raised by the Persistent Vegetative Patient,” Hastings Center Report
18, no. 1, March 1988, p. 35.
96. Bonnie Steinbock, “The Intentional Termination of Life,” in B. Steinbock, ed., Killing and Letting Die,
Prentice-Hall, Englewood Cliffs, NJ, 1980.
97. Jean Davies, “Raping and Making Love Are Different Concepts: So Are Killing and Voluntary Eutha-
nasia,” Journal of Medical Ethics 14 (1988), pp. 148–149.
98. Quoted in Barnard White Stack, “Doctors Divided Over the Very Ill,” Pittsburgh Post Gazette, June
11, 1990.
99. Timothy Quill and Margaret Pabst Battin, “Excellent Palliative Care as the Standard, Physician –
Assisted Dying as a Last Resort,” in Timothy Quill and Margaret Pabst Battin, eds., Physician-Assisted
pen07945_ch02_019-056.indd 55 9/8/16 9:51 AM
http://www.npr.org/sections/health-shots/2010/08/11/129127432/paul-longmore-historian-and-advocate-for-disabled-dies
http://www.npr.org/sections/health-shots/2010/08/11/129127432/paul-longmore-historian-and-advocate-for-disabled-dies
56 Chapter 2 Requests to Die: Terminal and Nonterminal Patients
Dying: The Case for Palliative Care and Patient Choice, Johns Hopkins Press, Baltimore, MD,
pp. 323–330.
100. Quoted in Alan Parachini, “A Dutch Doctor Carries Out a Death Wish,” Los Angeles Times, July 5,
1987, sec. 6, p. 9.
101. Douglas Walton, Slippery Slope Arguments, Oxford University Press, New York, 1992.
102. Alexander, “Medical Science under Dictatorship,” p. 47.
103. Ibid., p. 44.
104. Michael Specter, “Suicide Device Fuels Debate,” Washington Post, June 8, 1990.
105. Quoted in Peter Steinfels, “Dutch Study Is Euthanasia Vote Issue,” New York Times, September 20,
1991.
106. Yale Kamisar, quoted by Earl Ubell, “Should Death Be a Patient’s Choice?” Parade Magazine, February 9,
1992, p. 27.
107. T. Curiel, “Murder or Mercy? Hurricane Katrina and the Need for Disaster Training,” New England
Journal of Medicine, 355, no. 20 (November 16, 2006), p. 2067.
108. Nat Hentoff, “The Deadly Slippery Slope,” Village Voice, September 1, 1987.
109. Christiaan Barnard, One Life, Macmillan, New York, 1965.
110. Joan Teno and Joanne Lynn, “Voluntary Active Euthanasia: The Individual Case and Public Policy,”
Journal of the American Geriatrics Society 39 (1991), pp. 827–830.
111. Quill and Battin, “Excellent Palliative Care,” p. 325.
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Built on previous cases of Nancy Cruzan and Karen Quinlan, the famous case
of Terri Schiavo exploded in 2005. All three cases involved incompetent adults and
whether their medical treatment could be stopped. The Quinlan case started in 1975
in New Jersey courts. Fifteen years later in 1990, the U.S. Supreme Court decided
the landmark case of Nancy Cruzan. The Schiavo case started then and lasted
another 15 years, until 2005.
THE QUINLAN CASE
In April 1975, just after turning 21, perky, independent Karen Quinlan became
comatose from drinking alcohol after taking either barbiturates or benzodiazepines,
or both. (How Karen became comatose is controversial. See references in endnote
for this claim.)1 Karen had also been dieting, and at hospital admission, she weighed
only 115 pounds.
Benzodiazepines—antianxiety drugs such as Valium, Librium, Ativan, and
Xanax—act on specific nerve receptors in the brain and are considered safer than
barbiturates. The latter have been around since 1912, when physicians first used
phenobarbital.
Both benzodiazepines and barbiturates intensify with alcohol, an effect called
synergism. Alcohol potentiates (intensifies) the effects of these drugs, and an empty
stomach also increases the effects. Actor River Phoenix unintentionally killed
himself in 1993 by mixing barbiturates, alcohol, and benzodiazepines.
Karen lost her brain from a synergistic reaction of barbiturates, benzodiazepines,
and alcohol taken on an empty stomach. These drugs suppressed her breathing,
caused loss of oxygen to her brain, and, after 30 minutes, destroyed her higher brain.
At St. Clare’s Hospital, a Catholic institution in New Jersey, a small ventilator,
also called a respirator, kept Karen breathing. It also prevented aspiration of vomit,
which could cause pneumonia.
Ventilators began to be used in medicine during the 1960s and by 1975 had
become common in cases of emergency and trauma. The ventilator’s use in this
case showed that the criteria of death needed clarification. Because the brain must
C H A P T E R 3
Comas: Karen Quinlan, Nancy
Cruzan, and Terri Schiavo
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58 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
have a fresh supply of oxygenated blood to function, lack of such oxygenated
blood (anoxia) quickly damages the brain and over time destroys it. The traditional
definition of death—where the body stops breathing and the person is declared
dead—indirectly assumed brain death to be inevitable, but now a ventilator pre-
vents this.
Karen’s appearance shocked her sister, who said:
Whenever I thought of a person in a coma, I thought they would just lie there very
quietly, almost as though they were sleeping. Karen’s head was moving around, as
if she was trying to pull away from that tube in her throat, and she made little
noises, like moans. I don’t know if she was in pain, but it seemed as though she
was. And I thought—if Karen could ever see herself like this, it would be the worst
thing in the world for her.2
Sometimes Karen would choke, sit bolt upright with her arms flung out and her
eyes wide open, appearing to be in intense pain. Eventually her breathing stabi-
lized, but even then she didn’t breathe deeply enough to sigh. Without such
breathing, the lower sacs of her lungs risked infection. Hence, she was put on a
larger ventilator for a “sigh volume.” This larger ventilator required a tracheotomy
(a hole cut surgically in the throat or trachea) to which her mother, Julia Quinlan,
reluctantly agreed.
This more powerful ventilator altered her appearance. At a later hearing in
September 1975, her lawyer testified about Karen:
Her eyes are open and move in a circular manner as she breathes; her eyes blink
approximately three or four times per minute; her forehead evidences every notice-
able perspiration; her mouth is open while the ventilator expands to ingest oxygen,
and while her mouth is open, her tongue appears to be moving in a rather random
manner; her mouth closes as the oxygen is ingested into her body through the
tracheotomy and she appears to be slightly convulsing or gasping as the oxygen
enters the windpipe; her hands are visible in an emaciated form, facing in a praying
position away from her body. Her present weight would seem to be in vicinity of
70–80 pounds.3
Karen Quinlan was in a coma, of course, but what does that mean? The word
“coma” is vague. Despite popular belief in 1975, under New Jersey law, Karen was
not brain-dead, which required all of her brain not to be functioning.
Karen Quinlan lay in a serious form of coma called persistent vegetative state
(PVS). PVS is a generic term covering a type of deep unconsciousness that, if it
persists for a few months, is usually irreversible. In this case, her eyes were discon-
jugate, that is, they moved in different, random directions at the same time. Despite
eye movements, she was also thought to be decorticate: Karen’s brain could not
receive input from her eyes. She had slow-wave—not isoelectric or “flat”—electroen-
cephalograms (EEGs).
At one time, a patient in such a condition would simply starve to death; but in
the late 1960s, crude intravenous and nasogastric feeding tubes began to be used.
Initially, an intravenous tube fed Karen, but as her condition persisted, the rigidity
of her muscles made it difficult to insert and reinsert such a tube into her veins.
Five months after her admission, in September 1975, she required a nasogastric
feeding tube.
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 59
The Quinlans never allowed a realistic picture to be taken of Karen in PVS,
with a shaved head and on a ventilator and feeding tube.
In October 1975, deciding that Karen would never regain consciousness, the
Quinlans decided to remove the ventilator and let her body die. They had no idea
that their decision would be the easy part.
The Quinlans averred that Karen had twice said that if anything terrible
happened to her, she did not want to be kept alive as a vegetable on machines.
But was she really a “vegetable”? We now know that a rare patient may recover
from PVS.
The Quinlans asked the physicians of record, Robert Morse, a resident in inter-
nal medicine, and Arshad Javed, a fellow in pulmonary medicine, to disconnect
Karen’s ventilator. These physicians balked. Why?
First, in 1975, the American Medical Association (AMA) seemed to equate with-
drawing a ventilator for death to occur with euthanasia and then equated that with
murder. Back then, no federal or state court had clarified the rights of competent
dying patients, much less the rights of incompetent patients.
Second, the physicians feared that the Quinlans might later change their minds
and sue them for malpractice. One common definition of malpractice is “departure
from normal standards of medical practice in a community,” and in 1975—when
most physicians continued treatment until the last moments of life—assisting in the
deaths of comatose patients would have been such a departure.
At a legal hearing, Dr. Morse testified that no medical precedent allowed him
to disconnect Karen’s ventilator. Neurologist Julius Korein described Karen as
having no mental age at all and as being like “an anencephalic monster.”4 (Today,
this seems like a prejudicial way to describe Karen’s state.) Neurologist Fred Plum
described Karen as “lying in bed, emaciated, curled up in what is known as
flexion contracture. Every joint was bent in a flexion position and making one
tight sort of fetal position. It’s too grotesque, really, to describe in human terms
like fetal.”5
Because Karen had never written down her wishes in an advance directive, the
judge did not know what she would have wanted, so he decided that her ventilator
must continue. He ruled that her parents’ testimony about her wishes would not
be final, because it entailed her death. He also ruled that he could find no right to
die in the U.S. Constitution.
Several weeks later, the New Jersey State Supreme Court heard the case on
direct review. Physicians testifying there surprised these justices by distinguishing
between disconnecting a ventilator and not starting it. They argued that once they
accepted patients, they had an absolute duty to continue treatment indefinitely,
such that they could never cause death. But neurologist Julius Korein counter-testi-
fied that physicians privately used “judicious neglect” to let terminal patients die.
The justices pressed the hospital’s lawyers about the physician–patient rela-
tionship. Why couldn’t Morse and Javed allow Karen to be transferred to another
hospital, where other physicians could disconnect her? St. Clare’s lawyers hemmed
and hawed but finally said it would be immoral. The justices found this reasoning
“rather flimsy.”
In 1965, the U.S. Supreme Court cited a right to privacy in Griswold v. Con-
necticut, when it found state laws unconstitutional that banned physicians from
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60 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
giving contraceptives to married couples. Griswold found this kind of right in Okla-
homa v. Skinner in 1942, which noted a fundamental right to reproduction and
control of one’s body and thus blocked a law allowing involuntary sterilization of
habitual criminals. Griswold said that banning contraception violated a couple’s
fundamental liberty to lead its personal life as it saw fit, which the U.S. Constitution
assumed throughout.
In 1973, the U.S. Supreme Court strengthened the right to privacy in Roe v.
Wade (see Chapter 4), deciding that this same right included the right of a woman
to decide whether she would remain pregnant or abort her fetus.
In January 1976, the New Jersey Supreme Court ruled unanimously for the
Quinlans. The right to privacy allowed the family of a dying incompetent patient
to let her die by disconnecting her ventilator. The Supreme Court of the United
States had not yet made a comparable decision about the end of life, so the New
Jersey Supreme Court’s decision helped define a family’s right to let an incompetent
patient die based on the right to privacy (liberty).
The New Jersey court allowed Joseph Quinlan to become Karen’s guardian, gave
legal immunity to Morse and Javed for disconnecting Karen’s life support, and
suggested (though it did not require) ethics committees of laypeople in hospitals to
help in future cases.
Pulling the Plug or Weaning from a Ventilator?
In April 1976, four months after the higher-court decision, a ventilator helped Karen
Quinlan’s body breathe. By then, decubitus ulcers had eaten through her flesh,
exposing her hip bones.
But why was Karen still alive four months later? This is the least understood
and most controversial aspect of this case.
According to the Quinlans, Morse resisted implementing the decision of the
New Jersey Supreme Court, because “this is something I will have to live with for
the rest of my life.”6 The head nun at St. Clare’s lectured Mrs. Quinlan more bluntly,
“You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill
people.”7 To this, Julia Quinlan replied, “Why didn’t you tell me ten months ago? I
would have taken Karen out of this hospital immediately.”
The nuns saw the Quinlan decision as another step down a slippery slope
that had started three years earlier with Roe v. Wade. During the trial, a Vatican
theologian criticized the Quinlans, “A right to death does not exist. Love for
life, even a life reduced to ruin, drives one to protect life with every possible
care.”8 A pulmonologist in Rome said removal of the ventilator “would be an
extremely dangerous move by her doctors, and represents an indirect form of
euthanasia.”9
Instead of simply disconnecting Karen’s ventilator, Morse and Javed weaned her
from it. “Weaned” means that, by building up different muscles, they gradually
trained her body to breathe without the ventilator. The tired, confused Quinlans
did not understand what this meant and its real implications would become pain-
fully clear over the next 10 years. Eventually, Javed had Karen off the ventilator for
4 hours and then, after intensive work over many weeks, for 12 hours. By late May
1976, Karen was off the ventilator altogether.
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 61
This weaning confused the public: Some people took it to mean that Karen had
gotten better. Others thought that Karen’s physicians had “pulled the plug,” but a
miracle had prevented her death. Both impressions were false.
St. Clare’s Hospital now wanted Karen transferred, and in June 1976, New
Jersey’s Medicaid office forced a nursing home to accept her. At this point, Karen
had been in PVS for 14 months.
After more than 10 years in the nursing home, Karen Quinlan’s body expired
in June 1986. For several months before that, Karen had had pneumonia and the
Quinlans at the time declined antibiotics to reverse it.
Substituted Judgment and Kinds of Cases
The Quinlan decision used the standard of substituted judgment according to which
relatives or friends could say what they believed to be the wishes of the incompetent
patient.
But this standard has two major problems. First, substituted judgment is noto-
riously subjective.10 It presumes that decisions made by a patient’s family will reflect
what the patient him- or herself would have wanted. In the Quinlan case, like the
later Cruzan and Schiavo cases, no one know whether these women had really
expressed a wish not to have their lives prolonged or whether the families just
wished it so.
Second, how did a family’s right to exercise substituted judgment derive from
Griswold? Critics felt that the New Jersey Court had jumped too quickly from married
people’s right to control their own reproduction to some parents’ right to decide that
an adult, comatose incompetent child wanted to die—especially because few interven-
ing decisions had been made about whether competent, terminal adults could refuse
medical treatment. Given that quick, big jump, critics wondered what was next. Giv-
ing parents the right to make life-or-death decisions for never-competent patients?
For brain-damaged babies?
Quinlan also ran two different kinds of cases together.11 As noted, the Court based
its decision partly on the right to privacy, a right that in medical contexts would pre-
sumably apply only to competent patients. In brief, the right to privacy most obviously
applies to competent patients and their rights to determine their own medical destinies.
Ideally, the U.S. Supreme Court would have first laid out these rights and then tackled
incompetent patients. But life is messy and it didn’t happen that way, so the Quinlan
decision tackled incompetent patients first. It took 15 more years before things were
straightened out, when the U.S. Supreme Court finally brought closure in Cruzan.
THE CRUZAN CASE
The Cruzan case led to a landmark decision by the U.S. Supreme Court in June
1990.12 Before this decision, 20 states had recognized the right of competent patients
to refuse medical life support, and all these states (with the exception of New York
and Missouri) had recognized the right of surrogates to make decisions for incom-
petent patients.13 Although other decisions by lower courts had come to similar
conclusions, this was the first U.S. Supreme Court declaration that a competent
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62 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
patient could decline all medical treatment to die as his or her definitive constitu-
tional right.
On January 11, 1983, 24-year-old Nancy Cruzan lost control of her car at night
on a lonely, icy country road in Missouri.14 Thrown 35 feet from the car, she landed
face down in a water-filled ditch. Paramedics found that her heart had stopped.
Injecting a stimulant into her heart, they restarted it, but because her brain had
been anoxic for 15 minutes, Nancy did not regain consciousness.15
Over seven years, Nancy’s body became rigid, her hands curled tightly, and her
fingernails became clawlike. Like Karen Quinlan, Nancy could take nothing by
mouth and somebody turned her every two hours to prevent ulcers. She drooled
much of the time, wetting her hair, pillow, and sheets. Her care cost the state of
Missouri $130,000 a year.
Where the Quinlan case focused on withdrawal of a ventilator, the Cruzan case,
like the Schiavo case 15 years later, focused on withdrawal of a feeding tube. Because
she could not swallow, Nancy could not be fed by mouth. Loss of ability to swallow
signals a key decision in the care of incapacitated patients, especially those with
dementia or neurological damage. As mentioned, before feeding tubes began to be
used in the 1960s, such patients naturally died by starvation.
Artificial feeding can be done in three basic ways: (1) by a temporary nasoga-
stric tube run up the nostrils and down into the gastrointestinal tract; (2) by a
permanent intravenous feeding line, surgically attached to one of the major veins
of the chest; and (3) by a surgically implanted gastrostomy (PEG) tube. All feeding
tubes carry the risk of infection; with permanent tubes, the large volume of fluids
over time may cause other problems.
Morally, the question arose in the Cruzan case of whether a PVS patient is
owed food and water forever. Karen Quinlan’s parents thought so; they never
withdrew the nutrition that kept her body alive. Nancy’s parents, Joe and Joyce
Cruzan, thought otherwise: They sought permission in court to disconnect her
feeding tube.
In discussing the Cruzan case, it is necessary to understand different standards
of legal evidence. The minimum standard is preponderance of evidence; a more rig-
orous standard is clear and convincing evidence; the most rigorous standard—the stan-
dard used for serious felonies—is beyond a reasonable doubt.
Preponderance of evidence simply means that there is more evidence one way
than another; in some cases, this simply means there is a bit of evidence rather
than none. Clear and convincing denotes something more rigorous and, with dying,
requires an advance directive (living will) or durable power of attorney. Finally,
beyond a reasonable doubt requires the most evidence and is used in trials of homicide
to establish guilt and where the accused is presumed innocent.
The Cruzans won their case in lower (probate) court, but upon direct review,
the Missouri Supreme Court reversed, and its reversal had to do with the standard
of clear and convincing evidence. Because Nancy had no advance directive and
because only her parents and a sister testified about her alleged wishes, the Cruzans
did not provide “clear and convincing” evidence about Nancy’s wishes.
Missouri felt it had a duty to protect an incompetent adult child against par-
ents who might be merely seeking financial and emotional closure. The Missouri
Supreme Court agreed and concluded that the state had an interest in preserving
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 63
life, regardless of quality of life, and no matter how strongly the family felt oth-
erwise, that before medical support could be withdrawn from an incompetent
patient, the family had to meet the higher standard of clear and convincing
evidence.
Now for the Cruzan decision by the U.S. Supreme Court, which declared three
things. First, it recognized a right of competent patients to decline medical treatment,
even if such refusal led directly to their death.
Second, the Supreme Court found that withdrawing a feeding tube did not
differ from withdrawing any other kind of life-sustaining medical support. Some
state laws, which permitted forgoing or withdrawing ventilators but not artificial
nutrition, were hence unconstitutional.
Third, with regard to incompetent patients, the Supreme Court held in Cruzan
that a state could, but need not, pass a statute requiring the clear and convincing
standard of evidence about what a formerly competent patient would have wanted
done. Because Missouri had such a standard, its law was constitutional. Because the
Cruzan family had not met that standard, Nancy’s feeding tube could not be removed.
Cruzan said nothing about never-competent patients, such as people with pro-
found mental retardation. Because of past abuses, it is reasonable to expect that in
these cases, the Supreme Court could require the standard of beyond a reasonable
doubt.
Legal commentators mocked the previous legal standard of substituted judgment
“[leading] us to pretend that we are merely complying (however reluctantly) with
the wishes of the patient. . . . Almost any evidence is deemed sufficient to establish
a preference for death over PVS and/or families are empowered to express patient
preferences for death-with few questions asked.”16
The case of Nancy Cruzan illustrates this problem. Nancy’s father, Joe, said that
because Nancy was strong-willed and a fighter, she wouldn’t want to exist in PVS.
But others might infer a different conclusion that as a fighter, she might have fought
for any chance to return to normalcy.
Consider another standard used in such cases, the best interests of the patient.
So in the Cruzan case, would the best interests of Nancy be to live on in such a
state? Some people would say no, although this judgment is not open-and-shut,
especially as Missouri argued that Nancy’s best interests entailed continued feeding,
as activists argued in the later Schiavo case.
A different kind of reaction came from physicians who worked with families of
vegetative patients. The late neurologist/bioethicist Ronald Cranford of Minnesota,
who would later testify in the Schiavo case, predicted that “many families will expe-
rience the utter helplessness of the Cruzans.” Allowing the standard of clear-and-con-
vincing evidence placed “an enormous burden on society, which will spend hundreds
of millions of dollars each year for a condition that no one in their right mind would
ever want to be in.”17
Hospice physician Joanne Lynn lamented that in Missouri and New York, “the
suffering of the patient and family, the costs, the kind of life that can be gained,
are all to count for nothing. If life can be prolonged, then it will have to be.”18
Divorced just before her accident, some of Nancy’s old friends knew her only
by her married name, Davis. When her case first became known, they had not
realized who she was. After great publicity, the case was reheard in a lower court
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64 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
and Nancy’s old friends testified. The court then decided that Nancy Cruzan’s par-
ents had now met the clear-and-convincing standard.19 So five months after the
Supreme Court decided Cruzan, on December 14, 1990, physicians legally removed
Nancy Cruzan’s feeding tube, and her body died.
THE TERRI SCHIAVO CASE
While the U.S. Supreme Court justices deliberated Cruzan, another coma case began
on February 25, 1990. Terri Schiavo, a 27-year-old woman, went into a coma possi-
bly because of anoxia, a lack of oxygen to her brain, perhaps from a heart arrhyth-
mia caused by extreme hypoalkemia (an imbalance of potassium in her body),
causing severe hypoxic ischemic encephalopathy (brain damage).20
Before her heart attack, Terri Schiavo seemed anorexic. People with anorexia
may suffer from an imbalance of potassium. According to documents filed in a
malpractice suit by her family, a three-stage imbalance of potassium led to Terri’s
heart attack, which led to anoxia and subsequent brain damage.
To keep her alive, physicians inserted a percutaneous endoscopic gastronomy
(PEG) feeding tube. When a patient lacks the reflex to swallow, surgeons place PEG
tubes through the abdominal wall into the stomach, through which flows a nutri-
tious, slushy mixture. Doctors sometimes insert PEG tubes after an emergency to
buy time, assuming they may be temporary.
Yet once attached, feeding tubes can be difficult for families to remove. Years
later, removal of her feeding tube became the legal focus of Terri’s case.
In April 1990, husband Michael Schiavo transferred Terri from the hospital to a
rehabilitation center. In May, and with no objection from her parents, Robert and Mary
Schindler, Michael became Terri’s legal guardian. Later, her parents took her to their
home for care but, overwhelmed by the task, they returned her to the center. Michael
also flew Terri once to California for a two-month experiment with a “thalamic stim-
ulator implant” in her brain. After that experiment failed, Terri returned to the Medi-
plex Rehabilitation Center in Brandon, Florida, and for months 13–18 into her coma,
three shifts of workers worked 24 hours a day, trying to rehabilitate her.
In July 1991, Terri went to Sable Palms, a skilled care facility, where neurologists
continued to test her and where speech, occupational, and physical therapists
worked on her for three more years, until 1994. At this point, Terri had received
nearly five years of intensive efforts to return her to consciousness.
Michael Schiavo and Terri’s parents stopped living together in May 1992. That
August, Michael received a settlement from the malpractice case against Terri’s
obstetrician for failing to diagnose a potassium imbalance. He got $750,000 from
the hospital for a trust fund specifically set up for Terri’s care and $300,000 for loss
of her companionship.
The three adults allegedly then fought over money. The Schindlers believed they
were entitled to part of the $300,000 for loss of spousal companionship, but Michael
disagreed. After this dispute, their relationship soured.
Based on what several physicians told Michael, at this point Terri had no chance
of meaningful recovery. Michael agreed to a “Do Not Resuscitate” order for Terri,
but her parents violently disagreed and he later rescinded the order.
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 65
The Schindlers then tried to remove Michael as Terri’s guardian, but a court –
appointed special guardian investigated and determined that Michael had acted
appropriately toward Terri, which the court accepted.
Three years passed, during which Terri’s condition did not improve. During this
time and in order to help care for Terri, Michael became certified as a licensed
respiratory therapist.21
In May 1998, eight years after Terri’s heart attack, Michael asked a court to
allow removal of the PEG tube so that Terri could die. Michael testified that, while
watching television many years before, Terri had once remarked that she wouldn’t
want to live in a vegetative state. The Schindlers retorted that their daughter wanted
to live.
Nearly two years after Michael Schiavo’s request to have Terri’s feeding tube
removed, Judge George Greer in 2000 approved the request. He ruled that clear
and convincing evidence existed that Terri would not have chosen to live under
such circumstances. Legally, this ruling seemed wanting, because Terri’s parents
disputed the claim and because Terri had no advance directive.
The Schindlers appealed, which took a year, but they lost. They appealed again,
this time to the Florida Supreme Court, which in 2001 denied their appeal.
Over the next few years, the Schindlers began to allege that Michael caused
Terri’s condition, perhaps because of domestic abuse. An autopsy after her death
proved that no such abuse occurred. Moreover, if Terri had arrived at an emergency
room with this kind of trauma, Michael would have been reported—as required by
law—to authorities for domestic violence, battery, or possible manslaughter. More-
over, if such evidence had existed, the hospital and its physicians would not have
settled a malpractice case nor allowed Michael to become Terri’s guardian.
The Schindlers testified that, even if Terri had asked them to do so, they would
not remove Terri’s feeding tube under any circumstances. They said that even if she
developed gangrene and all her limbs had to be amputated, they would still keep
her alive.22
A year later, in the fall of 2003, having exhausted all appeals in Florida, the
Schindlers appealed in federal court to prevent removal of Terri’s feeding tube. The
Schindlers also appealed to the public through the media, and several physicians
publicly joined their side, including a pathologist and a physician who hoped to try
exotic “coma stimulation” therapies.
Enter Lawyers and Politicians
Governor Jeb Bush, a Catholic, filed a brief on the side of the Schindlers; he praised
the parents in the media for defending their daughter’s right to life. President
George W. Bush praised his brother’s stand. The Advocacy Center for Persons with
Disabilities filed a lawsuit claiming that removal of Terri’s feeding tube would abuse
a person with disabilities. The antiabortion group, Life Legal Defense Fund, helped
the Schindlers hire lawyers, eventually paying bills of $300,000.
Three neurologists, including neurologist Ronald Cranford, testified that Terri
was in PVS (Cranford substituted “permanent” for “persistent” to emphasize the
irreversibility of her condition). The Schindlers cited Terri’s ability to swallow saliva
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66 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
as evidence that she was not in PVS; Cranford testified that primitive functions in
her brain stem controlled such swallowing.
Physicians William Mayfield and William Hammesfahr, champions of hyper-
baric oxygenation therapy (HBOT), claimed HBOT would benefit Terri.23 Neurolo-
gist Ronald Cranford retorted, “Increase the blood flood to dead tissue, and what
do you get? Dead tissue.”24 Others found Hammesfahr unprofessional and noted
that he required advance cash for his treatments and never documented successes.
These physicians disagreed about what Terri’s movements meant. Ability to
respond to a squeeze or pinch is consistent with PVS. In the Cruzan case, when
neurologist Cranford examined Nancy, her lawyer William Colby described what
happened:
Cranford next grabbed hold of Nancy’s stiff right leg and tried to bend it straight.
Nancy grimaced. Then he reached for the soft skin on the inside of the upper part
of her right arm, and held the pinch. Slowly, as if she were a robot, Nancy’s head
lifted off the bed and turned. Her face locked on her father’s for about ten seconds,
before she lowered just as slowly to the pillow.25
Despite being there and witnessing this phenomenon in this case, Dr. Cranford
insisted that Nancy Cruzan’s biography was over, that no one was conscious within
the reflexes of her body, and that further treatment was futile.
In the fall of 2003, the Florida legislature passed a special bill, Terri’s Law, which
allowed Governor Jeb Bush to issue a one-time stay of a judge’s order to remove a
feeding tube in certain cases where a patient is in PVS. After its passage, Governor
Bush immediately issued the stay.
Michael and the American Civil Liberties Union appealed in state court and
won, but Governor Bush appealed to a mid-level appellate court, lost, and appealed
again to the Florida Supreme Court.
On September 23, 2004, Florida’s Supreme Court ruled 7–0 that Terri’s Law
was unconstitutional. It based its decision upon two constitutional canons: the sep-
aration of powers and the unlawful delegation of authority. “It is without question
an invasion of the authority of the judicial branch for the Legislature to pass a law
that allows the executive branch to interfere with the final judicial determination
in a case,” wrote Chief Justice Barbara Pariente.26
About two months later, the top U.S. Court let stand without comment the
decision by the Florida Supreme Court against Terri’s Law.27 Activists predicted
Terri’s imminent “brutal murder” and claimed that she was a “purposefully inter-
active, alert, curious, lovely young woman who lives with a very serious disability.”28
Much of these claims came from an edited video, clips of which cable television
often showed (because such stories need visual background). These pro-Schindler
clips can be easily seen on YouTube or by searching for videos on Terri Schiavo.
At the end of February 2005, 15 years after the case began, the Schindlers filed
a variety of desperate motions in Judge Greer’s court, but he still ordered the feed-
ing tube removed. The Schindlers appealed, but a Florida appellate court rebuffed
them.
Extraordinary events ensued, of a kind never before seen in the history of
modern bioethics. As the Schindlers lost in court, they became desperate; they
turned to the media, encouraging their son and daughter to appear on television.
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 67
Catholic priests dressed in robes of monastic orders appeared with them. People
flooded Florida legislators with emails and calls.
Activists and the Schindlers then turned to the U.S. Congress. First, House
leaders tried to compel Terri to appear before a House committee as a witness and
fall under protection of the federal program that protects witnesses. Judge Greer
ignored this subpoena.
Senator Bill Frist, a physician who planned to run for president in 2008, wanted
to align himself with the culture-of-life constituency that had helped George
W. Bush narrowly win. So Frist worked to get Congress to pass a federal version of
Terri’s Law, having President Bush fly back during a congressional recess to sign a
bill passed at midnight.29
Some critics said that Senator Frist crossed a dangerous line and committed
virtual malpractice by declaring—merely by watching the edited video clip and never
actually visiting or examining Terri—that Terri “did not seem to be” in a persistent
vegetative state. As one critic fumed, “It’s quackery. It’d be hilarious if it weren’t so
grotesque, how his presidential ambition and pandering to the right wing is clash-
ing with his life’s work.”30 Congressman Dave Weldon, a physician and also a pro-
life Republican, agreed with Frist. These high-ranking politician-physicians publicly
contradicted the fellow physicians who had actually examined Terri and whose area
of expertise covered PVS and comas.
Congressmen Frist and Weldon had one problem here: The federal government
cannot order a physician to insert a feeding tube. The only thing it could do is order
a federal judge to review the case again, which it did. Judge James Whittemore
reviewed the whole case over two days and concluded, like two dozen appellate
judges before him, that nothing was amiss, that Terri had no chance of recovery,
that Michael was properly motivated, and that previous courts had made no errors.
An appeal to the U.S. Court of Appeals for the 11th Circuit in Atlanta, a conserva-
tive group, produced the same conclusions.
During March 2005, media exposure escalated, producing what Newsweek later
called “a public spectacle airing nonstop on cable and playing on front pages around
the world.”31 Terri’s supporters traveled to Pinellas Park, Florida, to hold prayer
vigils, while others threatened to kill Michael and his lawyer, George Felos. Various
members and friends of both sides went on cable television shows and endlessly
discussed the family’s problems.
A juggernaut for Terri ensued: Soon four Schindlers, plus recovered coma
patients, shady physicians, activist monks, Patrick Mahoney, director of the Chris-
tian Defense Coalition, and antiabortion activist Randall Terry campaigned on tele-
vision, radio, and the Internet against Michael Schiavo, who was media shy and
had only his brother, Scott, and lawyer, George Felos, to help him.
Barbara Weller, an attorney working for the Schindlers, went from lawyer to
witness, swearing that she had personally seen Terri trying to talk. Protestors called
Judge Greer a “judicial murderer” and Republicans blasted the “imperial judiciary.”
The Reverend James Kennedy urged Governor Jeb Bush to ignore the federal judges
the way Alabama’s Governor George Wallace did in defying federal orders to inte-
grate the University of Alabama.32 The FBI arrested a man offering $250,000 to kill
Michael Schiavo and $50,000 to do the same to Judge Greer. Police arrested two
others trying to break into the hospice.
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68 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
Terri was said to be “suffering terribly” by starving, even though physicians in
palliative care repeatedly denied that when feeding tubes are removed, terminal
patients suffer and that in this case, any person still existed to suffer.33
The case showed the limitations of television and the Internet because what
made great visuals (people praying and screaming outside Terri’s hospice), great
drama (the Schindlers crying on television), and great tension (various people claim-
ing that Michael was evil) distorted the facts. What had been a private family
dispute became a take-no-prisoners war on national television.
On March 18, the last appeal failed to the U.S. Supreme Court (which had
already twice refused to the review) and physicians removed Terri’s feeding tube.
Palliative care physicians predicted it would take two weeks for the body to die and
emphasized that it would not be painful. Opponents outside decried “murder by
starvation.” After 13 days, while protestors prayed and rallied outside, Terri’s body
expired on March 31, 2005.
What Schiavo’s Autopsy Showed
Chief Medical Examiner for Pinellas County, Florida, Jon Thogmartin, M.D., released
Terri’s autopsy on June 13, 2005. It answered some questions and left others as
mysteries.
The big surprise of the autopsy was that “Mrs. Schiavo’s heart was anatomically
normal without any areas of recent or remote myocardial infarction. Her heart
(including the cardiac valves, conduction system and myocardium) was essentially
unremarkable. . . .” That was a surprise because, although people debated the cause
of her heart attack, few doubted that she had had one.
We will never know exactly what happened to Terri’s heart. Two crucial pieces
of evidence are that she may have consumed as much as one gram of caffeine a
day and that she had hypoalkemia. Perhaps this combination, after the extreme
weight loss, stressed her heart too much.
On the night of her original collapse, no other drugs were found in her system.
Another surprise was that the autopsy showed no clinical evidence of bulimia,
especially the kind of wear on the enamel of the back teeth that is often caused by
this condition. Despite the fact that the malpractice suit was settled on the assertion
that Terri had an undiagnosed eating disorder, the coroner’s report showed no
physical evidence of it.
However, it still was true that 15 years before, she had seemed anorexic. Cer-
tainly her low potassium level, the fact that her weight dropped more than 100
pounds in a few months, combined with her drinking gallons of iced tea, give
evidence to this hypothesis.
The autopsy by coroner Thogmartin also implied that Terri Schiavo was not in
(what later would be called) “a minimally conscious state.” It said that she had
massive brain damage. “Mrs. Schiavo’s brain showed global anoxic-ischemic enceph-
alopathy resulting in massive cerebral atrophy. Her brain weight was approximately
half of the expected weight. Of particular importance was the hypoxic damage and
neuronal loss in her occipital lobes, which indicates cortical blindness. Her remain-
ing brain regions show severe hypoxic injury and neuronal atrophy/loss. No areas
of recent or remote traumatic injury were found.”34
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 69
Finally, without the PEG feeding tube, she would have died. “Oral feedings in
quantities sufficient to sustain life would have certainly resulted in aspiration,” accord-
ing to the coroner Thogmartin. Aspiration of food in such patients is a serious, even
lethal, complication, causing infection, choking, and possible suffocation.
ETHICAL ISSUES
Standards of Brain Death
People have always feared being declared dead prematurely and buried alive. In the
eighteenth century, gruesome stories circulated about exhumations discovering
scratches on the inside lids of coffins. In the nineteenth century, some legislatures
required delays before burial, and in 1882, an undertaker named Kirchbaum
attached periscopes to coffins and put cowbells inside, so people waking up inside
could signal for help.35
This whole-body standard became inappropriate when ventilators allowed respi-
ration of brain-damaged patients. Before them, heart-lung machines could maintain
immobilized patients. In 1967, when Christiaan Barnard transplanted Denise Dar-
vall’s heart into a dying patient named Louis Washkansky (discussed in Chapter 10),
the question arose whether Denise Darvall had really been dead before Barnard
removed her heart. Because Barnard needed a healthy heart for transplantation,
Denise obviously hadn’t been declared dead by the whole-body standard. So medi-
cine needed a new standard of death, specifically of brain death, to determine when
organs could be removed.
Shortly after that event, an ad hoc committee at Harvard Medical School devel-
oped the Harvard criteria of brain death.36 The Harvard criteria operationally defined
brain death as behavior that indicated unawareness of external stimuli, lack of bodily
movements, no spontaneous breathing, lack of reflexes, and two isoelectric (nearly
flat) electroencephalogram (EEG) readings 24 hours apart. These criteria required loss
of virtually all brain activities (including the brain stem and hence breathing).
The Harvard criteria personify caution: No one declared dead by them has ever
regained consciousness. (One could say, “If you’re Harvard dead, you’re really
dead.”) Its extreme conservatism disappoints people waiting for organ transplants:
during the past half-century, it has covered relatively few patients.
Another standard of brain death is the cognitive criterion. This criterion identi-
fies a philosophical core of properties of persons and assumes that without such a
core, a human body is no longer a person; the core properties commonly include
reason, memory, agency, and self-awareness. For example, neurological disorders
such as Alzheimer’s or Lewy body dementia destroy brain cells at a high rate so
that over a decade, none of the higher person remains.
The cognitive criterion has the greatest potential to generate organs for trans-
plantation. So far, however, it has been too controversial and too vague to be
adopted by any state, although countless families use it to cease treatment to speed
a body’s death.37
A third standard of brain death is irreversibility, and it falls between the Harvard
and cognitive criteria. According to it, death occurs simply when unconsciousness is
irreversible. Operationally, this judgment would be made by a neurologist and another
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physician. The irreversibility standard would allow PVS patients to be declared dead
after several years (perhaps, in some cases of anoxia, after several months).
In popular culture, some people believe that a metaphysical event with physical
manifestations marks death, perhaps the counterpart of a similar event at the begin-
ning of life. Some people would describe this event as the entrance and departure
of a soul. But the occurrence of such metaphysical events seems to have no physical
manifestations, and as such, cannot be proven.
So in medical reality, the definition of death is often not so much a discovery
as a decision that families and physicians make—not an event—but a process.38 Unfor-
tunately, many families lack preparation to make such decisions and find it easier
to believe that physicians “discover” that a patient has died.
The phrase “brain death” is misleading. Newspapers commonly refer to some-
one as being “brain-dead” for months until “life-support” is removed, after which
the patient “expires.” Bioethicist Lance Stell argues that such terms incorrectly
imply that a patient could be dead in two different ways, such that there are degrees
of being dead and that someone might die more than once. For Stell, it’s better to
write about “death by neurological criteria.” A being that meets these criteria, he
says, “is not a patient but a cadaver.”39
Proposals to redefine brain death create controversy. On the one hand, reform-
ers want to end public uncertainty over brain death, expand the number of organs
available for transplantation, save the medical system money by not maintaining
comatose patients, and help families move on after the death by having a universally
accepted practical definition. On the other hand, advocates for vulnerable patients
want to give them every chance of recovery.
For example, in 2013, after a tonsillectomy had gone wrong, a 13-year-old
African-American from Oakland, California, Jahi McMath, choked on blood and
was declared dead by neurological criteria. Her parents refused to accept the dec-
laration and moved her ventilator-dependent body to New Jersey, which is the only
state requiring hospitals to maintain breathing, brain dead patients when their fam-
ily’s religious beliefs opposed the declaration. There, her body could live for decades.
Chances of Regaining Consciousness from Coma and PVS
The question of whether the movements of PVS patients are intentional behavior
or merely reflexes raises philosophical as well as medical issues. Intentional behavior
indicates an organism seeking a goal, such as freedom from pain, and might indi-
cate awareness. As the seventeenth-century philosopher René Descartes noted, we
infer consciousness in others from outward behavior. We cannot directly observe it.
Permanent lack of consciousness is also an inference. So are shrimp conscious?
Probably not, which we infer from their behavior and anatomy.
Consider four surprising cases of long-term unconsciousness. First, after an
automobile wreck in Arkansas, Terry Wallis emerged from a coma after 19 years,
regained awareness, and lives today. Neurologist Joseph Fins believes that doctors
misdiagnosed Wallis, who really was in minimally conscious state (MCS).40 Second,
in 1996, police officer Gary Dockery of Tennessee emerged out of his coma of
eight years to talk for a few hours to his family, after which he returned to a coma-
tose state and died a year later in April.41 Third, Patricia White Bull became coma-
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tose while giving birth to her fourth child and could not speak, swallow, or move
much, but suddenly awoke 16 years later to full consciousness on Christmas Eve,
1999. Fourth, after a car accident, Sarah Scantlin of Kansas went into a coma and
emerged 19 years later.42 Comas in all four cases were caused by trauma, not anoxia.
Ethically, the fact that anyone at all comes out of a long-term coma is crucial
because it changes the prognosis from certainty to probability. Families who want
emotional closure prefer to hear physicians say that the patient has “no” chance of
recovery. The emotional weight changes when a patient has a “tiny” chance.
A review of these cases reveals an interesting conceptual disagreement among
neurologists. Some claim that any patient who emerges from PVS was not really in
PVS. But this is a non-falsifiable, circular argument: If you awaken, you weren’t in
PVS. If you never awaken, you were in PVS.
In 1994, in a then-definitive study in the New England Journal of Medicine by the
Multi-Task Force on PVS, 7 of 434 adults with traumatic head injuries who were in
PVS for more than a year made good recoveries and regained consciousness, some
with normal quality of life.43 Should traumatic PVS befall some people, they might
want this 7/434th chance of recovery. Several other studies have shown that,
although few patients ever emerge from PVS, some people do within the first year,
and once in a thousand times after three years.44 Again, all these patients suffered
traumatic injuries, not anoxia.
In a 1995 study of 19 patients with severe head injuries and persisting post –
traumatic unawareness, 58 percent (11 patients) recovered within the first year and
5 percent (1 patient) within the second.45 In a 1996 study of 34 patients with anoxic
coma, 2 patients with “malignant EEGs” (the worst classification, where patients
were expected to die based on lack of brain wave activity) eventually made a “good
recovery.”46
Some patients emerge, especially in the first few months, after coma caused by
trauma, but rarely in coma caused by anoxia. “It’s the difference between taking a
blow to the brain, which affects a local area—and taking this global, whole-brain
hit,” asserted New York bioethicist Joseph Fins in explaining the difference.47
In 2005, some neurologists, including Fins, after working with brain-damaged
patients at several facilities around New York City, advocated for a new category of
MCS, which is a state above PVS and with some chances for recovery utilizing
deep-brain stimulation. MCS is a category between the previous ways of classifying
coma patients as either comatose or vegetative.48
Alan Shewmon, a famous pediatric neurologist, called the new category “an
inaccurate name for an invalid concept.” Shewmon argues that there is no scientific
way to distinguish between minimal consciousness and full consciousness, implying
that consciousness is something one either has or does not have, like saying you
can’t be a little bit pregnant.
But why can’t a lightbulb be, not on or off, but bright or dim? Why can’t con-
sciousness be a gradient? Terri’s defenders retort that people are minimally con-
scious all the time—in sleep or after injury—and what is important is the potential
for recovery of consciousness. If it’s impossible to prove any difference between
minimal consciousness and consciousness, it also must be impossible to disprove a
difference. So if Terri was in MCS, she might at times feel something. After all,
brains do not get injured in neat taxonomic lines.
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72 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
By 2007, neurologists such as Fins focused not on ability to recover from
anoxia-caused PVS as on patients classified as in PVS but misdiagnosed. In a 1996
study in England, one researcher estimated that 17 of 40 patients in PVS had been
so misdiagnosed. Another study in 2010 claimed that 40 percent of disorders of
consciousness are misdiagnosed.49 Could Terri Schiavo have been misdiagnosed?
An important study in 2007 by Adrian Owen noted that,
The assessment of patients with disorders of consciousness, including the vegeta-
tive state, is difficult and frequently depends on subjective interpretations of the
observed spontaneous and volitional behavior. . . . However, it is becoming
increasingly apparent that in some patients damage to the peripheral motor sys-
tem may prevent overt responses to command although the cognitive ability to
perceive and understand such commands may remain intact. Recent advances in
functional neuroimaging suggest a novel solution to this problem: in several cases,
so-called activation studies have been used to identify residual cognitive function
and conscious awareness in patients who are assumed to be in a vegetative state
yet retain cognitive abilities that have evaded detection using standard clinical
methods.50
In this study, researchers asked a PVS patient to imagine playing tennis and walk-
ing. Every time they asked her about playing tennis, her brain lit up, whereas it did
not when they asked her about walking.
The latest claims focus on MCS, fMRI scans, and deep-brain stimulation of
supposed PVS patients. Through an intense program with probes that stimulated
the thalamus, a deep part of the brain, they enabled one or two patients to return
to MCS. Using fMRI scans of blood flow to the brain, physicians have identified
dozens of patients with this potential and improved one or two remarkably.51 Yama-
moto treated 21 of 103 vegetative patients with deep-brain stimulation and 8 of the
21 recovered enough to understand verbal commands.52
In 2009, Belgian researcher Steven Laureys awoke Rom Houben, who for 23
years had been conscious, unable to move, and falsely diagnosed in PVS. “Once
someone is labeled as being without consciousness, it is very hard to get rid of
that,” Laureys said.53 Someone later claimed Houben was writing a book about his
23 years, but that turned out to be hoax.54
In conclusion, patients who are stimulated during the first six months after
injury and who became comatose through trauma rather than anoxia or global isch-
emia are most likely to recover. Also, the potential for recovery diminishes as the
years increase, but—as the cases show at the beginning of this section—is rarely zero.
Terri’s Chances of Re-awakening
No case exists of anyone emerging from PVS of three years’ duration. Toward the end
of Terri Schiavo’s life, when activists shouted the contrary at cameras, she had been
in PVS for 15 years, and hence, according to clinical evidence, had no chance of
returning to normal consciousness. Physicians who have seen her CT scan said that
her brain, instead of being filled with normal brain tissue, then contained only cere-
brospinal fluid, an indication of gross neurological damage and vegetative status.55
Terri’s EEG was flat and her CT scan showed severe atrophy in her cerebral
hemispheres. Schindler-friendly physicians suggested vasodilators, but the autopsy
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 73
showed what professional neurologists claimed: Nothing would have helped her
regain consciousness.
Dartmouth neurologist James Bernat agreed but understood why laypeople ral-
lied behind Terri. “Just looking at a videotape of someone propped up in bed, with
their eyes blinking and so on, it look’s like they’re aware,” he said.56 They are
awake, he said, but not aware. With an intact brain stem, their eyes can still follow
things but only slightly to the left or right.
Compassion and Its Interpretation
In cases like that of Karen Quinlan or Nancy Cruzan, the Golden Rule might imply:
If I ended up in a condition like Karen’s or Nancy’s, I would want to die, and I hope
that those around me would be merciful enough to let me die. If I could somehow
possibly be “conscious” in such a state, I wouldn’t want to go on. I wouldn’t want
to be imprisoned in such a body for months or years, which would be worse than
being buried alive. Mercy requires us to make dying humane, not an endless torture.
Such a thought illustrates how the Golden Rule can be interpreted in different ways.
Some people might want a chance to recover, even if it is very slight. “Doing what-
ever someone else wants” must take into account that people differ in their person-
alities and wants.
The Quinlans and the Cruzans did argue that allowing Karen and Nancy to die
would be merciful. The issue of mercy is relevant in these and similar cases because we
can’t know for certain that such patients do not feel—we cannot be certain that they do
not experience sensations such as pain and discomfort; we may not even be certain that
they do not experience distress, fear, frustration, loss, or other tormenting emotions.
Eventually, the cases of Karen Quinlan and Nancy Cruzan came to symbolize
mercy as an issue for both patients and families. These cases seemed to represent
an inversion of values in medicine: instead of doing what families wanted, medicine
did what bureaucracies required; instead of a dignified death, breathing machines
and feeding tubes maintained existence; instead of a quick death, there was slow
withering of an emaciated body over a decade. On top of all that, the chance that
a shell of a person might still exist in pain was too much for most people. For many
people, the long dying of these two patients lacked mercy.
Would not most people abhor such a life? Abhor the thought of inhabiting a
body for 15 years in which they could not scratch an itch, express a wish, or perform
any human act? No one knows what might be going on in such a mental remnant.
Whatever destroyed the original mind might have left it in disarray, such that Terri’s
mental life had become an endless nightmare.
If Terri Schiavo could have awakened for 15 minutes and could have understood
her condition, what she looked like, and what the case was doing to her family, can
anyone think that this shy, weight-conscious woman would have wanted her
brain-damaged, disfigured body exhibited to the world this way? If emotional revul-
sion is going to count in ethics, what about her revulsion?
Her parents saw this differently. They felt she would have wanted to live, even
in such diminished circumstances. This shows the problem with simplistic interpre-
tations of the Golden Rule or substituted judgment.
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74 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
Religious Issues
As we saw, in 1976, the Catholic Church opposed withdrawal of a ventilator for
Karen Quinlan. Over the next 40 years, Catholic hospitals softened their opposition
to such withdrawals and indeed became models of compassionate dying, routinely
removing feeding tubes from comatose patients.
But in 2004, during the Schiavo case, Pope John Paul II said that removal of
feeding tubes from patients in PVS was “euthanasia by omission.”57 Although not
delivered ex cathedra, the Pope’s remark cast doubt on that practice.
In contrast, Father Kevin O’Rourke, one of the leading Catholic medical ethi-
cists in North America, argued that feeding tubes were extraordinary care and
should not be used to prolong the life of PVS patients. He noted that both Catho-
lic ethicists working in hospitals, as well as doctors and nurses there, routinely
allowed removal of life support from patients in PVS. Father John Paris, a leading
Jesuit bioethicist and professor of ethics at Boston College, noted that the Pope’s
remarks targeted a specific audience and predicted they would have little impact in
America. “I think the best thing to do is ignore it, and it will go away,” Paris said.
“It’s not an authoritative teaching statement.”58
After the Schiavo case, Catholic hospitals could remove life-sustaining care
under very few conditions.59 The case also had other effects. In 2013, in Washington
State, as Catholic hospitals merged with other hospitals, big political issues emerged
whether the new Catholic-controlled entity would perform abortions, allow assisted
reproduction or removal of ventilators and feeding tubes, or recognize rights of
same-sex couples.60
Nagging Questions
Not everything in the Schiavo case adds up. First, as attorney general William Web-
ster for Missouri said about the case of Nancy Cruzan, “We generally don’t allow a
life to be ended on hearsay.”61 He was referring to statements by Nancy’s father and
sister that they thought they remembered her saying she wouldn’t want to live on a
feeding tube.
Michael Schiavo’s very late recollection of a comment by Terri years before to
the same effect seems ad hoc, that is, remembered for the purpose at hand. Regard-
less of its veracity, it simply does not meet the standard of clear and convincing
evidence, especially when directly contradicted by both Schindler parents and
her brother, Bobby. Three-to-one against doesn’t add up to clear-and-convincing
evidence for.
Second, why not relinquish guardianship to the Schindlers? Michael’s position
was that, first, he had long ago exhausted all the money on her care, and second,
she had died long before. But if that were so, why not let her parents care for her
body? After a few years, they would probably come to agree, as Karen Quinlan’s
mother did, but why not let them get closure that way? If Terri was already dead,
she couldn’t be harmed anymore.
Third, although the coroner’s report closed some questions, it opened others:
How did she lose so much weight so fast? Just by drinking iced tea? That doesn’t
add up. Why did she suddenly stop breathing? If not a heart attack, then what?
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Disability Issues
As interest grew in the Schiavo case, advocates for disabled people began to take
notice. While the Quinlan and Cruzan cases had never been conceptualized as
involving discrimination against disabled persons, the last decades have witnessed
the growing influence of disability culture.
Advocates for Terri Schiavo claimed that this severely, cognitively impaired per-
son was a victim of discrimination against the disabled. Since passage of the Americans
with Disabilities Act (ADA) in 1990, denial of medical resources to a disabled person
because he is disabled violates federal law. However, the ADA has never specified
end-of-life cognitive deterioration (which also would include Alzheimer’s disease)
as a covered disability.
Groups such as Not Dead Yet, the World Association of Persons with
Disabilities, the National Spinal Cord Injury Association, and Joni and Friends
opposed removal of Terri’s feeding tube. Of course, to claim that Terri Schiavo
is a victim of discrimination against disabled persons assumes that she is still a
person. That is exactly what disability advocates claimed. Given the increasing
acceptance that a patient in PVS for a decade cannot revert back to conscious-
ness, Terri’s advocates thus increasingly claimed that she is not in PVS but in a
minimal consciousness state.
Charleston disability rights lawyer Harriet McBryde Johnson charged that, “Ms.
Schiavo has a statutory right under the Americans with Disabilities Act not to be
treated differently because of her disability. Obviously, Florida law would not allow
a husband to kill a non-disabled wife by denying her nourishment. Because the state
is overtly drawing lines based on disability, it has the burden under the ADA of
justifying those lines.”62
Some Distinctions
Futile versus Non-Futile Care. In December 1991, Helga Wanglie, age 87, had
been in PVS for eight months, sustained by a ventilator and a feeding tube, at
Hennepin County Hospital in Minneapolis, Minnesota.63 At the hospital, the phy-
sicians (who included Ronald Cranford) decided to withdraw treatment. Helga’s
husband refused permission for discontinuation of her ventilator and feeding tube,
and he went to court.
The Wanglie case surprised for two reasons. First, since Helga’s insurance
covered her hospitalization, the hospital lost money by withdrawing artificial
life support. Second, the case involved a philosophical dispute about whether a
relative could force the medical team to continue care it regarded as futile. When
Helga died unexpectedly, the legal case ended.64
In 1989, in Massachusetts, physicians were sued for removing medical support
that they unanimously believed to be futile. Even though the jury agreed that
Caroline Gilgunn would have wanted to remain on life support, the physicians won
because the jury agreed that patients could not force physicians to render futile
treatment.
In the 1990s, some physicians believed that medical futility was a descriptive
concept that could help physicians and families easily make decisions about
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treatment at the end of life. Today, most bioethicists believe that medical futility is
not entirely descriptive and contains the evaluative assumption that continued treat-
ment is “not worth it.”65
The Schiavo case is a good example: Competent neurologists unanimously
agreed that, after three years, further treatment was futile for Terri, yet some staff,
her parents, and rogue neurologists disagreed, claiming it could be worthwhile.
Most American patients and their families now decline treatment when their
physicians advise them that further treatment is futile. A study in 1994 that followed
over 4,000 patients whose condition was diagnosed as life threatening or terminal
found that only 14 percent of them were resuscitated after being near death. This
figure was far less than most physicians predicted and far less than it would have
been a decade earlier, when most of those patients would have been resuscitated.66
Extraordinary versus Ordinary Treatment. In 1957, a group of anesthesiologists
asked Pope Pius XII what they owed dying patients. The Pope said that they need
not take heroic steps to keep such patients alive: Patients were owed merely ordi-
nary, but not extraordinary, treatments. However, “extraordinary” is equivocal and
has meaning across the end points of a continuum that shifts with medical progress.
In 1967, when Christiaan Barnard first transplanted a human heart, his heart-lung
bypass machine was extraordinary. That machine was the forerunner of the large,
bulky ventilator that kept Karen Quinlan breathing. Today, miniaturized ventila-
tors—some small enough to be used with premature babies—are used everywhere in
medicine. Yesterday’s extraordinary treatment becomes today’s ordinary treatment,
rendering the distinction less helpful than it was a half-century ago.
Artificial Nutrition and Hydration. In the 1980s, some people believed that what-
ever might be said about extraordinary and ordinary care in the future, providing
food and water would always be considered ordinary and humane medical care. They
felt that such basic care was morally owed to PVS patients. This issue arose in the
Schiavo case.
The reality of feeding a chronically vegetative patient is not like spooning
chicken soup into the mouths of patients who are simply weak. Most vegetative
patients have no swallowing reflexes, so they cannot be fed by mouth. Therefore,
an artificial liquid diet must be mechanically pumped into their bodies.
The chicken-soup image can distort people’s impression of a PVS case. Karen
Quinlan’s sister, for example, thought that her comatose sister would look like
Sleeping Beauty and was shocked by the emaciated figure she saw. By the time of
Nancy Cruzan’s case in 1990, improvements in artificial feeding would create the
opposite effect: Because of retention of fluids, PVS patients now had the rotund
“Porky Pig” face seen in Terri Schiavo. Moreover, with many kinds of feeding tubes,
patients must be tied down to avoid dislodging the line. A restrained, bald woman
with a “porky” face is not how most people visualize PVS patients.
As said, neither dehydration nor starvation distresses semiconscious, dying
patients. Patients near death not on nutritional support seem more comfortable than
patients on whom such support is forced. One important national commission
noted in 1983 that loss of appetite is “almost the norm in the latter stages of ter-
minal illness” and concluded, “Only rarely should a dying patient be fed by tube
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 77
or intravenously.”67 Indeed, such feeding may actually make the patient suffer and
thus harm him or her.
Shaky arguments abounded in the 1980s against withdrawing nutrition and
hydration. Some states allowed removal of ventilators but not of feeding tubes, and
champions of a sanctity-of-life worldview saw removal of feeding and hydration tubes
as the immediate cause of death and hence as mercy killing. One philosopher argued
in 1983 that providing food and water to PVS patients is the ordinary care “that all
human beings owe each other”; another argued at about the same time that such
feeding involves “the most fundamental of all human relationships,” and that “to
tamper with, or adulterate, so enduring and central a moral emotion” is “a most
dangerous business.”68
By the 1990s, most physicians had come to feel that artificial IV feeding lines
for PVS patients compared to ventilators: both were advanced medical technology.
The Cruzan decision in 1990 agreed.
Withdrawing and Forgoing Treatment. During the last 40 years, a central moral
debate has concerned the degree to which a physician may hasten deaths of dying
patients. One cause of this debate was a declaration by the AMA in 1973 (two years
before Quinlan):
The intentional termination of the life of one human being by another—mercy
killing—is contrary to that for which the medical profession stands and is contrary
to the policy of the American Medical Association.
. . . The cessation of the employment of extraordinary means to prolong the
life of the body when there is irrefutable evidence that biological death is imminent
is the decision of the patient and/or immediate family.69
In this statement, the word “extraordinary” is ambiguous, and AMA policy did not
clarify it. Are all patients on ventilators receiving extraordinary care? Is a physician
who withdraws a dying patient’s ventilator or feeding tube guilty of mercy killing?
Concern about mercy killing led some physicians to forgo the use of ventilators
and artificial feeding. Since withdrawal of such care might be seen as mercy killing, it
was far easier to just forgo support. This reasoning created an odd situation, in which
physicians would forgo the same treatment that they would not otherwise withdraw.
Others believed that because outcomes are never certain, patients were owed
treatment on a trial period—perhaps both a ventilator and artificial feeding—to see
if they could recover.
In 1975, Karen Quinlan’s physicians, Morse and Javed, upheld the official position
of AMA: that withdrawing medical support from a patient was “active euthanasia.”
In 1986, the AMA decided that an ethical physician, after consulting with the family,
could withdraw ventilators and feeding tubes from irreversibly comatose patients.
This new AMA policy did not say that being irreversibly comatose meant being
brain-dead. Criteria for ethical removal of medical support differ from criteria of
brain death.
Advance Directives
The Quinlan case caused written advance directives to become popular in various
forms. A living will informs physicians about conditions under which a person would
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78 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
not want medical support. A values inventory specifies what a person values in life
and may be useful to a patient’s family and physicians if they must make decisions
for that person. A durable power of attorney assigns to someone else the right to make
financial and life-and-death medical decisions if the signee becomes incompetent.
Cruzan emphasized that such a document would be crucial in meeting the “clear
and convincing” standard required by New York and Missouri. After the Schiavo
case, many Americans rushed to sign such directives (which may be downloaded
at the Caring Connections website). In 1991, the Health Care Financing Adminis-
tration required all American hospitals to ask incoming patients if they wanted to
create an advance directive.
Advance directives contain two major problems. First, as the SUPPORT study
showed, most people do not accurately predict their own future preferences.70 Sec-
ond, evidence has grown that spouses designated as legal proxies do not accurately
predict the wishes of previously competent but now incompetent spouses.71 As
frequently as they wrongly predict a desire for mere palliative care, they just as
frequently wrongly predict desires for aggressive treatment.72
Advance directives often do not cover nonterminal, though permanently coma-
tose, patients. As such, advance directives should specify whether food and water
are included under unwanted medical treatment or name a specific person to be a
proxy for an incompetent patient. Because such directives are requested of patients
only upon admission to hospitals, most people under 30 do not have one.
The Schiavo Case, Bioethics and Politics
Outsiders made things worse in the Schiavo case. Not understanding the history of
the false report of abuse and trauma on the 1991 bone scan, outside experts guessed
that something malevolent had happened to Terri, making her advocates suspect a
cover-up by Terri’s husband and the courts. Outside physicians, pushing their own
exotic, for-profit schemes, exploited gullible parents and friends.
When Terri’s parents went to national media, especially in an age of fierce
competition among cable news stations for sensational topics, the floodgates opened.
And because politicians on the national scene love media attention, and as Florida
Senator Mel Martinez predicted, U.S. senators, congressmen, and even the presi-
dent got involved. Ten years after Terri’s death in 2005, Michael Schiavo is still
bitter, saying that Jeb Bush “put me through hell.”73
Since 1997 when scientists announced the cloning of the lamb Dolly (see
Chapter 6), bioethics has become increasingly politicized, with social conservatives
extolling the personhood of human embryos and opposing all forms of cloning. The
Schiavo case landed on this pedigree and exploded. Whether it’s good for bioethics
to be covered all evening on cable news outlets remains to be seen.
FURTHER READING AND RESOURCES
William Colby, The Long Goodbye: The Deaths of Nancy Cruzan, Carlsbad, CA: Hay House,
2002.
Joseph Fins, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,
New York: Cambridge University Press, 2015.
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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 79
Mark Fuhrman, Silent Witness: The Untold Story of Terri Schiavo’s Death, New York: William
Morrow, 2005.
Joseph and Julia Quinlan, with Phyllis Battelle, Karen Ann: The Quinlans Tell Their Story, New
York: Doubleday, 1977.
Michael Schiavo, and Michael Hirsh, Terri: The Truth, New York: Dutton Adult Books, 2006.
Robert and Mary Schindler, with Suzanne Schindler Vitadamo and Bobby Schindler, A Life
that Matters: The Legacy of Terri Schiavo, New York: Time Warner Books, 2006.
Between Life and Death: The Terri Schiavo Story, A&E films. This excellent 45-minute summary
of the case, made by CBS News, has good pictures of Terri in various stages of her life
and pictures of Patricia White Bull and Terry Wallace (coma patients who awakened
after many years).
DISCUSSION QUESTIONS
1. If you had only a 1 percent chance of coming out of a long-term coma or PVS,
would you want physicians to keep treating you, or would you rather want they
let you die?
2. In the above case, what burdens or benefits would continued treatment place
on your family and loved ones?
3. Many elderly people will succumb to coma-like states in their final years as they
decline into neurological conditions such as Alzheimer’s disease. Can society afford
long-term care for millions of such people? Is there a morally relevant difference
between such care for a 90-year-old with dementia and a 25-year-old in PVS?
4. If families won’t or can’t make decisions about death, is it permissible for
physicians to act as if they’ve discovered that death has occurred in a relative,
to help out the family? Is this a white lie? Would Kant approve?
5. Are worries about a slippery slope legitimate in the coma cases of this chap-
ter? If society starts triaging such marginal people, will it lead to a “culture
of death” rather than a “culture of life”? What will happen if society faces
a great financial crisis over paying for medical care for cognitively impaired
patients and we don’t have a strong culture of life? Will society fail this
new test?
6. James Rachels argues that it’s morally irrelevant whether physicians withdraw
or forgo ventilators and feeding tubes, but the two actions certainly feel different
to families and physicians. Are these feelings relevant to accessing the morality
of letting die?
7. How do expanded definitions of death by neurological criteria depend on great
trust in the integrity of the transplant community not to abuse such
definitions?
8. What is the proper role of state and federal government in cases like Nancy
Cruzan and Terri Schiavo? Should it protect vulnerable patients and assume
the worst of families or should it assume the best of families and give them
wide latitude to decide?
9. Given the SUPPORT study, would it help to avoid family disputes if most people
had an advance directive? What are the limitations of such directives and
hospital ethics committees to resolve these cases?
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80 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
10. Is it fair to conceptualize the cases in this chapter as “disabled people” needing
protection under the Americans with Disabilities Act? If we do so, what problems
arise?
11. In the Schiavo case, did Michael Schiavo meet the standard of clear and convincing
evidence for removal of Terri’s feeding tube? Why didn’t he turn the case over
to her parents and let them take care of her, as they volunteered to do?
NOTES
1. Robert Morse, in In the Matter of Karen Quinlan: The Complete Legal Briefs, Court
Proceedings, and Decisions in Superior Court of New Jersey, vols. 1 and 2, University
Publications of America, Frederick, MD, 1982, p. 236 (hereafter, Proceedings 1,
Proceedings 2). The later court transcript contradicts itself about the exact drugs
Karen consumed. Attending physician Robert Morse testified that “she had some
barbiturates, which was normal, 0.6 milligrams; toxic is 2 milligrams, and the
toxic dose is about 5 milligrams percent” [sic]. Julius Korein, in Proceedings 1,
pp. 34–35. Consulting neurologist Julius Korein, whom the Quinlans hired, tes-
tified that Karen’s drug screen “was positive for quinine, negative for morphine,
barbiturates and other substances. A subsequent test for Valium and Librium
was positive.”3 (No one else mentioned Librium.) Court prosecutor George Dag-
gett testified that Karen had taken tranquilizers with alcohol shortly before
becoming unconscious.4 George Daggett, New York Times, September 20, 1975,
New Jersey sec. The Quinlans denied that the drug screen showed barbiturates:
“The early urine and blood samples, taken on the day Karen was brought to the
hospital, revealed only a ‘normal therapeutic’ level of aspirin and the tranquilizer
Valium in her system.”5 Joseph and Julia Quinlan with Phyllis Battelle, Karen
Ann: The Quinlans Tell Their Story, Doubleday Anchor, New York, 1977, p. 22.
2. Joseph and Julia Quinlan with Phyllis Battelle, Karen Ann: The Quinlans Tell Their
Story, Doubleday Anchor, New York, 1977, p. 27.
3. Daniel Coburn, in Proceedings 1, p. 17. (Robert Morse, in In the Matter of Karen
Quinlan: The Complete Legal Briefs, Court Proceedings, and Decisions in Superior
Court of New Jersey, vols. 1 and 2, University Publications of America, Frederick,
MD, 1982.)
4. Julius Korein, in Proceedings 1, p. 329.
5. Fred Plum, in Quinlan and Quinlan, Karen Ann, p. 198.
6. Robert Morse, in Quinlan and Quinlan, Karen Ann, pp. 188–189.
7. Quinlan and Quinlan, Karen Ann, pp. 272–273 (the nun is not named).
8. Gino Concetti, quoted in Quinlan and Quinlan, Karen Ann, p. 284.
9. Quoted in Quinlan and Quinlan, Karen Ann.
10. Nat Hentoff, “The Deadly Slippery Slope,” Village Voice, September 1, 1987.
11. Ibid.
12. Cruzan v. Director, Missouri Dept. of Health, 110 S. Ct. 2841, 1990.
13. George Annas, “Nancy Cruzan and the Right to Die,” New England Journal of
Medicine 323, no. 10 (September 6, 1990), p. 670.
pen07945_ch03_057-083.indd 80 9/8/16 9:51 AM
Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 81
14. “Love and Let Die,” Time, March 19, 1990, pp. 62ff.
15. Andrew M. Malcolm, “Nancy Cruzan: End to Long Goodbye,” New York Times,
December 29, 1990, p. A3. See also, “A Conversation with Mr. and Mrs. Cruzan,”
Midwest Medical Ethics: The Nancy Cruzan Case 5, nos. 1–2 (Winter/Spring 1989).
16. John Robertson, “Cruzan: No Rights Violated,” Hastings Center Report 20
no. 5 (September-October 1992), p. 7.
17. Ronald Cranford, lecture at UAB Medical School, January 19, 1991.
18. Joanne Lynn and Jacqueline Glover, “Cruzan and Caring for Others,” Hastings
Center Report 20, no. 5 (September–October 1992), p. 11.
19. Annas, “Nancy Cruzan and the Right to Die,” p. 672.
20. Timothy E. Quill, “Terri Schiavo—A Tragedy Compounded,” New England Journal
of Medicine 352 (April 21, 2005), pp. 1630–1633.
21. According to Kenneth Goodman, M.D., of the Department of Bioethics at the
University of Miami. Personal communication, November 14, 2004.
22. Arian-Camp-Flores, “The Legacy of Terri Schiavo,” Newsweek, April 4, 2005, p. 26.
23. Stephen Barrett, M.D., “Judge Criticizes Hammesfahr and Maxfield Testimony in
Schiavo Case,” CaseWatch, http://www.casewatch.org/civil/schiavo.shtml
24. Arian-Camp-Flores, “The Legacy,” p. 26.
25. Quoted from William Colby, The Long Goodbye: The Deaths of Nancy Cruzan, Hay
House Publishing, Carlsbad, CA, 2002.
26. Manuel Roig-Franzia, “Florida High Court Overrules Governor in Schiavo
Case,” Washington Post, September 24, 2004, p. A3.
27. Manuel Roig-Franzia, “Court Lets Right-to-Die Ruling Stand,” Washington Post,
January 24, 2005, p. A12.
28. Ibid.
29. Charles Babington and Mike Allen, “Congress Passes Schiavo Measure,” Wash-
ington Post, March 2, 2005, p. A1.
30. Democrat Jim Jordan, quoted by Charles Babington, “Viewing Videotape,Frist
Disputes Fla. Doctors’ Diagnosis of Schiavo,” Washington Post, March 20, 2005,
p. A3.
31. Tamara Lipper, “Between Life and Death,” Newsweek, March 28, 2005, p. 30.
32. Manuel Roig-Franzia, “Schiavo’s Parents Take ‘Final Shot’ to Keep Her Alive,”
Washington Post, March 26, 2005, p. A4.
33. Nancy Weaver Teichert , “Experts: Lack of Food, Water, Does Not Cause Pain for
Dying,” Sacramento Bee, March 28, 2005; Birmingham News, March 29, 2005, p. A6.
34. “Report of Autopsy,” Medical Examiner, District Six, Pasco and Pinellas Counties,
10900 Ulmerton Road, Largo, FL 33778, Autopsy date: April 1, 2005. p. 8.
35. President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, Defining Death, Superintendent of
Documents, Washington D.C., 1981, p. 14.
36. Ad Hoc Committee of the Harvard Medical School to Examine the Definition
of Brain Death, “A Definition of Irreversible Coma,” Journal of the American
Medical Association 205, no. 337 (1968).
pen07945_ch03_057-083.indd 81 9/8/16 9:51 AM
http://www.casewatch.org/civil/schiavo.shtml
82 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
37. The characteristics listed by the philosopher Mary Anne Warren in Chapter 4
(with regard to whether an aborted fetus is a person) might be used in a sim-
ilar way to define the higher person standard: If all these characteristics are
lacking we do not have a person.
38. Robert Morrison, “Death: Process or Event?” Science 173 (1971), pp. 694–698.
39. Lance Stell, “Let’s Abolish ‘Brain-Death,’ ” Community Ethics (University of Pitts-
burgh Center for Medical Ethics) 4, no. 1 (Winter 1997).
40. Joseph Fins, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Con-
sciousness, Cambridge University Press, 2015, New York, NY, pp. 65–71.
41. Associated Press, “Policeman Who Briefly Emerged from Coma-Like State in
‘96 Dies,” Birmingham News, April 16, 1997, p. 7A.
42. Benedict Carey, “Inside the Injured Brain, Many Kinds of Awareness,” New York
Times, April 5, 2005.
43. Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative
State,” parts 1 and 2, New England Journal of Medicine 330, no. 22 (May 26, 1994;
June 2, 1994), pp. 1572–1579.
44. S. I. Dubroja et al., “Outcome of Posttraumatic Unawareness Persisting for More
than a Month,” Journal of Neurological Neurosurgery Psychiatry 58, no. 4 (1995),
pp. 465–66; R. Chen et al., “Prediction of Outcome in Patients with Anoxic
Coma: A Clinical and Electrophysiologic Study,” Critical Care Medicine 24,
no. 4 (April 1996), pp. 672–678; Associated Press, “Policeman Who Briefly
Emerged from Coma-Like State in ‘96 Dies.”
45. Dubroja et al., “Outcome of Post-traumatic Unawareness Persisting for More
than a Month.”
46. R. Chen et al., “Prediction of Outcome in Patients with Anoxic Coma: A Clinical
and Electrophysiologic Study,” Critical Care Medicine 24, no. 4 (April 1996),
pp. 672–678.
47. Carey, “Inside the Injured Brain.”
48. Carl Zimmer, “What If There’s Something Going On in There?” New York Times
Magazine, September 29, 2003.
49. M. Monti et al., “Willful Modulation of Brain Activity in Disorders of Conscious-
ness,” New England Journal of Medicine 362, no. 7 (February 18, 2010), pp. 579–590.
50. Adrian Owen, “Using Functional MRI Imaging to Detect Covert Awareness in
the Vegetative State,” Archives of Neurology 64, no. 8 (August 2007), p. 1098.
51. Morgan Peck, “Brain-Wave Test Challenges Vegetative-State Diagnosis,” IEEE
Inside Technology Spectrum, August 1, 2008, p. 1. http://spectrum.ieee.org/bio-
medical/diagnostics/brainwave-test-challenges-vegetativestate-diagnosis.
52. Kate Connolly, The Guardian, November 23, 2009.
53. Takamitsu Yamamoto et al., “Deep Brain Stimulation for the Treatment of Veg-
etative State,” European Journal of Neuroscience, Vol. 32, pp. 1145–1151, 2010.
54. “Story of Book-Writing Coma Patient Debunked,” National Public Radio,
February 17, 2010.
55. Her CT scan can be seen at: http://theness.com/neurologicablog/index.php/
schiavo-and-the-persistent-vegetative-state/.
pen07945_ch03_057-083.indd 82 9/8/16 9:51 AM
http://spectrum.ieee.org/bio-medical/diagnostics/brainwave-test-challenges-vegetativestate-diagnosis
http://spectrum.ieee.org/bio-medical/diagnostics/brainwave-test-challenges-vegetativestate-diagnosis
http://theness.com/neurologicablog/index.php/schiavo-and-the-persistent-vegetative-state/.pen07945_ch03_057-083.indd
http://theness.com/neurologicablog/index.php/schiavo-and-the-persistent-vegetative-state/.pen07945_ch03_057-083.indd
http://theness.com/neurologicablog/index.php/schiavo-and-the-persistent-vegetative-state/.pen07945_ch03_057-083.indd
Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 83
56. Rita Rubin, “Doctors Work to Understand Vegetative States,” USA Today, March 21,
2005, p. 3A.
57. Cathy Lynn Grossman, “Pope Declares Feeding Tubes a ‘Moral Obligation,’ ”
USA Today, April 2, 2004, p. A1.
58. John Paris, quoted by Lisa Greene, “At Pope’s Word, New Schiavo Cases?” St.
Petersburg/Tampa Bay Times, May 1, 2004, http://www.sptimes.com/2004/05/01/
Tampabay/At_pope_s_word__new_S.shtml.
59. Manuel Roig-Franzia, “Catholic Stance on Tube-Feeding Is Evolving,” Washington
Post, March 27, 2005, p. A7.
60. Kirk Johnson, “Hospital Mergers Resent Abortion-Access Battle,” New York
Times, May 12, 2013, p. A1.
61. William Webster, quoted from “The Cruzan Right-to-Die Case,” Face-to-Face with
Connie Chung, (NBC television show), September 3, 1990
62. Harriet McBryde Johnson, “Overlooked in the Shadows,” Washington Post,
March 25, 2005.
63. Lisa Belkin, “As Family Protest, Hospital Seeks End to Woman’s Life Support,”
New York Times, January 10, 1991, pp. A1–2.
64. Steven Miles, “Interpersonal Issues in the Wanglie Case,” Kennedy Institute of
Ethics Journal 2, no. 1 (March 1992), pp. 61–72.
65. For a review of these cases, see Law, Medicine, and Health Care 20 (1993),
pp. 310–315.
66. R. Knox, “Americans’ New Way of Dying: Don’t Fight It,” Boston Globe, June 5,
1994.
67. Ibid., app. B, p. 288.
68. Daniel Callahan, “On Feeding the Dying,” Hastings Center Report 13, no. 5
(October 1983), p. 22; Gilbert Meillander, “On Removing Food and Water:
against the Stream,” Hastings Center Report 14, no. 6 (December 1984),
pp. 11–13.
69. American Medical Association, Opinions of the Judicial Council, Chicago, IL,
1973.
70. SUPPORT Principal Investigators, “A Controlled Trial to Improve Care of
Seriously Ill Hospitalized Patients. The Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatment (SUPPORT),” Journal of the
American Medical Association 274 (1995), pp. 1591–1598.
71. R. F. Uhlmann, R. A. Pearlman, and K. C. Cain, “Physicians and Spouses’
Predictions of Elderly Patients’ Treatment Preferences,” Journal of Gerontology
43 (1988), pp. 115–121.
72. Rick Weiss, “Patients’ Surrogates Often Wrong about Preferred Treatment,”
Washington Post, March 14, 2006, p. A3.
73. “Jeb ‘Put Me through Hell,’ “ POLITICO Magazine, January 29, 2015.
pen07945_ch03_057-083.indd 83 9/8/16 9:51 AM
http://www.sptimes.com/2004/05/01/
This chapter discusses abortion and its history prior to its legalization by the U.S.
Supreme Court in 1973 in Roe v. Wade. It also discusses the controversial case of
Kenneth Edelin, who aborted a late-term fetus; experiments on fetuses, fetal and
fetal-tissue research; and emergency contraception (Plan B).
KENNETH EDELIN’S CONTROVERSIAL ABORTION
In January 1973, just nine months before Kenneth Edelin aborted a fetus in Boston
in October, the U.S. Supreme Court had legalized abortion. Edelin served as chief
resident in obstetrics at Boston City Hospital.
Over those nine months, researchers at this hospital had performed experiments
on to-be-aborted fetuses and reasoned this way: Since the aborted fetuses were going
to die anyway, why not use them in experiments to help other fetuses?
What about this reasoning? If unclaimed, runaway pets will be killed after three
days in the pound, why not use them in medical experiments to help other dogs?
If terminal patients will die anyway, why not test new drugs or procedures on them?
If Jews are going to die anyway in concentration camps, why not use them—as Nazi
physicians reasoned—in medical experiments? (These claims illustrate reductio ad
absurdum reasoning.)
The research at this hospital studied which drugs crossed the placenta and,
hence, which might harm the fetus. Physicians gave women undergoing abortions
the antibiotics clindamycin and erythromycin, later examined the aborted fetuses,
and found that these drugs concentrated in livers of fetuses.
In another study in 1973, researchers tried to develop an artificial placenta.
Eight fetuses, weighing between 300 and 1,000 grams, were obtained by hys-
terotomy. A hysterotomy is abortion by caesarean surgery that involves cutting
through the lower abdominal wall. When researchers placed the largest of them in
a warm saline solution that mimicked the amniotic sac, it gasped frantically and
moved its limbs as it died.1 In another experiment on the effect of lack of glucose
to the brain, researchers severed heads of 12 nonviable fetuses after stopping their
C H A P T E R 4
Abortion: The Trial of
Kenneth Edelin
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Chapter 4 Abortion: The Trial of Kenneth Edelin 85
hearts but before anoxia damaged their brains. The researchers successfully
maintained the fetal brains with artificial replacements for glucose.2
An article describing the first experiment appeared in June 1973 in the New
England Journal of Medicine, a publication edited in Boston.3 Someone mailed a copy
to several Boston Catholics.
Protestant theologian Paul Ramsey called such experimentation “unconsented-
to research on unborn babies” and exploitation of a “tragical case of dying” babies.4
These experiments outraged Americans. After publicity about them in 1975, Con-
gress banned all federally funded research involving fetuses. Because it did not
know where to draw a line, it also banned funding of research involving human
embryos.
A councilman held a hearing in September 1973 to investigate the experiments
on fetuses. Antiabortionists packed the auditorium and heard Mildred Jefferson, an
African-American assistant professor of surgery at Boston University, speak of her
opposition to abortion.
At Edelin’s trial, Jefferson would later testify that some women undergoing
abortion in studies at Boston City Hospital were too young to consent legally and
had not consented in writing. If this were true, researchers could be charged with
“grave robbing,” that is, illegally procuring bodies for medical experimentation.
As a result of these hearings, nothing happened to the researchers or to Boston
City Hospital, which continued to experiment. But Catholic Bostonians festered
about legalized abortion. In this milieu in October 1973, Edelin performed a con-
troversial abortion.
In 1973, Kenneth Edelin was 35 years old. The son of a postman, he grew up
poor in Washington, D.C. Graduating with a B.S. from Columbia University, he
received his M.D. from the historically black Mcharry Medical College, and then
served three years as a U.S. Air Force physician. In 1971, he began his residency at
Boston City Hospital, known as the public hospital for poor people and the model
for the television show St. Elsewhere. When the case occurred, Edelin was the first
African-American chief resident in OB/GYN in the hospital’s history.
“Alice Roe” is a pseudonym for a 17-year-old African-American student from
Roxbury, a poor suburb of Boston, whom Edelin (decades later) called “Evonne.”
Edelin’s faculty supervisor, Hugh Holtrop, examined Evonne, estimating her to be
22 weeks pregnant. Enrique Giminez, a first-year resident from Mexico, estimated
her to be 24 weeks pregnant (Giminez later testified against Edelin); a third-year
medical student, Steve Teich, who assisted during the abortion, agreed with Giminez’s
estimate. At the time, the underfunded hospital had no ultrasound machine and
couldn’t make a more precise estimate.
Even though Holtrop had admitted Evonne, and even though the fetus to be
aborted was late-second trimester, Holtrop delegated third-year resident Edelin to
perform the abortion. Like most attending physicians, Holtrop had a private prac-
tice and spent little time at this hospital, so third-year residents normally did such
operations.
To complicate matters, Holtrop had obtained Evonne’s and her mother’s per-
mission for another fetal experiment, this time to see if aminoglutethamide increased
the hormone output of the placenta. Accordingly, Holtrop gave Evonne
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86 Chapter 4 Abortion: The Trial of Kenneth Edelin
aminoglutethamide intravenously and analyzed her urine over the next 24 hours.
His study took place on October 1–2, 1973.
Edelin planned to abort the fetus by injecting saline solution into the amniotic
sac, but the next day, when he inserted a needle to sample her amniotic fluid, he
drew blood. This indicated that Evonne had an anterior placenta, attached to her
uterine front wall, with the fetus behind it (the placenta normally develops near
the spine with the fetus near the abdomen). Saline injected into the placenta could
travel into her bloodstream, where it could be lethal to Evonne.
So Edelin rescheduled Evonne for a hysterotomy the next day. Instead of
Giminez, Edelin chose Teich, the third-year medical student, as his assistant. Unin-
vited, Giminez watched the hysterotomy from a distance.
What happened next is controversial. Giminez later testified that Edelin made
the cesarean section, reached in, cut the placenta from the abdominal wall, waited
three minutes, and then removed a dead fetus. If such a wait took place, it is
important because a baby cannot breathe on its own inside the uterus: It begins
breathing only when brought outside. Edelin would soon be charged with man-
slaughter for not immediately removing the baby, causing it to suffocate.
Afterward, someone took the fetus to the morgue, and—as required by hospital
policy for aborted fetuses weighing more than 600 grams—preserved it in formalin.
This meant that the district attorney had a body for the crime and photographs to
show a jury.
A grand jury indicted Edelin. Newman Flanagan, a competent, tough, and
showy district attorney, prosecuted Edelin. William Perkins Homans, Jr., a wealthy
Boston lawyer who often defended unpopular causes, defended Edelin; Judge James
McGuire presided.
Flanagan charged Edelin with manslaughter, defined in Massachusetts as “wanton,
reckless” omission or commission of an act that causes death; Massachusetts law fur-
ther defined “wanton, reckless” conduct as “the legal equivalent of intentional conduct”
and as “disregard of the probable consequences to the rights of others.” Judge McGuire
told the jury, “The essence of wanton or reckless conduct is the doing of an act or the
omission to act where there is a duty to act, which commission or omission involves
a high degree of likelihood that substantial harm will result to another.”5
Massachusetts did not pass an abortion law until August 1974 (19 months after
Roe v. Wade), and in the absence of a specific state law, Judge McGuire instructed
the jury that Roe v. Wade was “absolutely controlling.” Since Roe v. Wade equated
personhood with viability, the jury thought it had to determine whether Evonne’s
fetus had been viable.
The Supreme Court had said only that viability is “usually” placed at 24 to
28 weeks, not that viability necessarily falls within that range. It had not specified
how to determine the viability of a late-term fetus. If Evonne’s fetus wasn’t viable,
no person had been killed; and if no person had been killed, no manslaughter
charge could be brought.
Edelin testified that his operation on Evonne had seemed long to Giminez
because her thick abdominal wall had not yet stretched enough to sever easily.
Considered safer than vertical incisions and to leave less scarring, Edelin made a
Pfannenstiel (“bikini”) incision. Surgeon William Nolen wrote that making such an
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Chapter 4 Abortion: The Trial of Kenneth Edelin 87
incision could not take three minutes.6 Edelin testified that Giminez confused his
initial abdominal incision with his second incision to detach the placenta.
Flanagan showed the jury a picture of the fetus. Homans objected angrily,
arguing it would inflame the jury and prove nothing about viability. Judge
McGuire allowed it, but charged the jury with not viewing it “from any emotional
point of view.”7
Flanagan concluded that when Edelin cut the placenta, the fetus had been
viable and hence was a person; Edelin had waited three minutes and this delay
constituted “wanton, reckless conduct”; finally, the goal of legal abortion was not
to produce a dead fetus but merely to end a pregnancy, so Edelin should have saved
the viable fetus before cutting its placenta.
Judge McGuire instructed the jury that an unborn fetus was not a person and
could not be the subject of a manslaughter indictment. Such an indictment could
refer only to a person, defined by Massachusetts law as a baby—a fetus that has been
born. Because birth was critical, Judge McGuire instructed the jury, “You must be
satisfied beyond a reasonable doubt . . . that the defendant caused the death of a
person who had been alive outside the body of his or her mother.”
So the jury had to decide: (1) Had Evonne’s fetus been alive outside Evonne’s
body? (2) If so, did the baby die as a result of “wanton, reckless conduct” by Edelin?
The jurors said “yes” to both points and convicted Edelin of manslaughter.
Judge McGuire sentenced Edelin to a year of probation. If this conviction had
stuck, Edelin would have lost his medical license. While Edelin appealed, Boston
City Hospital immediately offered him a permanent position.
In 1976, three years after Evonne’s surgery, the Massachusetts Supreme Court
overturned Edelin’s conviction, declaring that the district attorney had presented
no evidence of criminal negligence and writing, “In the comparative calm of appel-
late review, the essential proposition emerges that the defendant had no evil frame
of mind, was actuated by no criminal purpose, and committed no wanton or reck-
less act in carrying out the medical procedures on Oct. 3, 1973.”8 The Court did
not require a new trial but simply acquitted Edelin.
Upon hearing of his acquittal, Edelin was “jubilant.” He said, “It’s great to be
able to smile again after two-and-a-half years.”9 Television anchor Walter Cronkite
that evening triumphantly announced that Edelin had been acquitted of “man-
slaughter by abortion.”10
William Nolen, a surgeon who examined the case in his book The Baby in the
Bottle, concluded that the fetus had not been outside the womb, so it had not been
born and thus no manslaughter charge had been warranted.11 Nolen’s conclusion
was made not only as a surgeon but also as someone who opposed abortion.
For the ethics of abortion, Nolen believed that Edelin had intended to abort a
late fetus and once he had opened Evonne, he was surprised to find her fetus viable.
Nolen doesn’t say that Edelin suffocated the fetus, but he does say that whether a
newborn has a will to live can be known only if the physician takes it out of the
womb, slaps it, and helps it to breathe:
What is disturbing in the Roe case is that, by his own admission, Edelin made no
attempt to see if the child had that spark. As [Jeffrey] Gould [another physician
who testified] said, the will to live isn’t always immediately apparent; it becomes
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88 Chapter 4 Abortion: The Trial of Kenneth Edelin
obvious only if “the physician will try to stimulate, will try to give a little bit of
oxygen, and look for a favorable response.” . . .
The Roe baby wasn’t given this bit of provocation that might—just might—have
shown it had the will to live. Why? The answer is distressingly simple. No one
wanted the Roe baby to live.12
For the next three decades, both Newman Flanagan and Edelin worked in
Boston: Newman, as one of the longest serving district attorneys in America; Edelin,
as chair of OB/GYN at Boston City Hospital and associate dean at Boston University
School of Medicine. He later became Chairman of the Board of Planned Parenthood
Federation of America. As an adult, he learned that his grandmother had once
needed to terminate a pregnancy and that she had obtained the abortion “some-
where in the woods of Washington, D.C., lying on the ground.”13
In 2013, another African-American physician, Kermit Gosnell was sentenced to
life in prison for the death of a patient under his care and the deaths of seven
newborns said to have been born alive after attempted abortions.14
BACKGROUND: PERSPECTIVES ON ABORTION
The Language of Abortion
This book will use medically accepted terms for the stages of a human life. When
sperm meets egg, conception starts an embryo; after nine weeks and until birth,
this being is a fetus and at birth is a baby.
Definitions of these terms have legal and ethical consequences. For example, a
baby can be the subject of a homicide charge but not a fetus. Critics of abortion
object to the connotation of “fetus” as a being containing less value than a baby
and refer to the growing fetus as a “baby.”
Abortion and the Bible
Without interpretation, the Bible or the Torah do not explicitly forbid abortion. In
this regard, Paul Badham, a British professor of church history, writes:
The Bible certainly teaches the value of human life, and forbids the murder of
any human being (Psalm 8). But life, in biblical terms, commences only when
the breath enters the nostrils and the man or woman becomes a “living being”
(Genesis 2:7). . . . Consequently in biblical terms the fetus is not a person. This
is brought out clearly in the laws relating to murder. . . . For whereas “whoever
hits a man and kills him shall be put to death” (Exodus 21; 12), “. . . if some men
are fighting and hurt a woman so that she loses her child, but is not injured in
any other way, the one who hurt her is to be fined.” . . . And this absence of
concern for the fetus is also implied by the imposition of the death penalty on
women who conceive out of wedlock, without any consideration being given
to the fact that this killed both the fetus and the woman (Deuteronomy 22:21,
Leviticus 21:9, Genesis 38:24).15
Jesus never explicitly speaks about abortion anywhere in the Gospels.16 If the Old
Testament or the Gospels do not explicitly condemn abortion, why do so many
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Chapter 4 Abortion: The Trial of Kenneth Edelin 89
conservative Christians condemn abortion today? An answer comes from the
development of Church doctrine.
The Old Testament took its final form during the fifth century Before the Com-
mon Era (B.C.E.) and the New Testament was finalized around the year 200 of the
Common Era (C.E.)—when Christianity began as an organized religion. As an orga-
nized religion, Christianity always opposed abortion, but its view of abortion has
changed over 1,800 years.
By the fourth century C.E., Christian teaching about sex was in crisis. Christi-
anity idealized celibacy, but if too many Christians were celibate, Christianity would
die out (as the Shakers did). Practically, most people could not practice perfect
celibacy. Consequently, Augustine revised Christian teaching in the fourth century
to allow sexual intercourse in marriage, but only if the couple intended to have chil-
dren.17 It follows for Augustine that abortion is sinful, because it thwarts the only
justification for having sex: to produce a child.
In the twelfth century, Christian doctrine began to separate abortion from homi-
cide by distinguishing between “formed” and “unformed” embryos. The concept
had to do with the soul rather than with physical development.
In the thirteenth century, St. Thomas Aquinas held that God ensouled male
embryos at day 40 of gestation, female embryos at day 90. Aborting a male embryo
after day 40 was punished more severely than aborting a female embryo at the same
age, since the male was formed but the female was not. Although abortion at any
time was sinful, penalties increased when the fetus was formed.18
During the nineteenth century, scientific evidence discredited the Thomistic concept
of ensoulment. Microscopes revealed life at tiny stages, including human life. Around
1850, popes began denouncing abortion in increasingly absolutistic terms. During this
time, Catholicism came close to teaching that personhood began at conception, a view
called immediate animation. (Over the last 30 years, the Church has moved closer to
immediate animation, especially with its emphasis on the value of the human embryo.)
In 1870, Pope Pius IX resisted the growing power of science by convening the
First Vatican Council. It declared that his edicts and those of future popes would
be infallible.19 From 1869 to 1900, the Church encouraged veneration of Mary
(which had been neglected), supported Creationism against geological explanations
of the origins of the earth, emphasized miracles (Fatima was recognized shortly
afterward), and vigorously attacked Darwinism.
In Catholic ethics, the doctrine of double effect allowed abortions for two cases:
ectopic pregnancy and uterine cancer (in which the uterus and fetus must be removed
together). According to this doctrine, an action having two effects, one good and the
other evil, is morally permissible under four conditions: (1) if the action is good in
itself or not evil; (2) if the good follows as immediately from the cause as from the
evil effect; (3) if only the good effect is intended; and (4) if there is a proportionately
grave cause for performing the action as for allowing the evil effect.
Historical Catholic doctrine was stricter than the law. During the seventeenth
century, European common law did not indict women for aborting even a quickened
fetus. Finally, in 1803, an English statute made abortion of a quickened fetus a
capital crime.
From the seventeenth through the nineteenth centuries, American law followed
English common law: Abortion before quickening was only a misdemeanor. In 1973,
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90 Chapter 4 Abortion: The Trial of Kenneth Edelin
in its Roe v. Wade decision, the U.S. Supreme Court reviewed the legal background
of abortion and concluded:
It is thus apparent that at common law, at the time of the adopting of our Consti-
tution, and throughout the major portion of the nineteenth century, . . . a woman
enjoyed a substantially broader right to terminate a pregnancy than she does in
most States today. At least with respect to the early stage of pregnancy, and very
possibly without such a limitation, the opportunity to make this choice was present
in this country well into the 19th century.20
This leniency changed after the Civil War, when most states criminalized abortion.
The American medical profession opposed abortion from 1870 to 1970.
Historians argue that this opposition stemmed from paternalism, misogyny, and
protection of professional turf by male physicians: “Anti-abortion legislation was
part of an anti-feminist backlash to the growing movement for suffrage, voluntary
motherhood, and other women’s rights in the nineteenth century.”21
Before the Civil War, midwives delivered most babies, and in doing so, they
competed with physicians. After this war, male physicians took over deliveries. So
bans on abortions both drove out midwives and helped medicalize birth.
The Experience of Illegal Abortions
Before the Supreme Court legalized abortion in 1973, women undergoing abortions
had it bad. Physicians performing abortions usually did so only for money; some
demanded sex. Others lectured women on their promiscuity.
Though abortion is painful, abortionists didn’t use anesthesia. Abortionists
didn’t explain to women beforehand what would happen or why. If damage occurred,
women had no legal recourse. Women usually didn’t know the names of abortionists,
who forbade further contact. Illegal abortions cost a lot, condemning poor women
to unwanted children. (And still may be costly: In 2009, a legal abortion at 10 weeks
of gestation cost an average of $450, with 60 percent of women paying for it with
cash or credit card and not including costs of getting there; 28 states require a
woman to wait 24 hours between being informed of risks of the procedure, increas-
ing costs for women traveling from other areas.22)
Despite these conditions, during the 1950s and 1960s, hundreds of thousands
of American women had illegal abortions. Some died as a result: 193 died in 1965
alone, and over 1,000 during the 1960s.23 In contrast and in 2007, the most recent
year for the Centers for Disease Control reporting data, abortion clinics reported
that only six women died from consequences of legal abortions.24
Because what they had done was illegal, victims of botched abortions entered
emergency rooms only at the last moment. Some died of widespread abdominal
infections, and those who recovered often were sterile. Poor women of color ran
the greatest risks; in 1965, 55 percent of abortion-related deaths were among them.
1962: Sherri Finkbine
In 1962, Sherri Finkbine, living with her husband and their four children in Phoenix,
Arizona, became pregnant with a fifth child.25 During her second month of
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Chapter 4 Abortion: The Trial of Kenneth Edelin 91
pregnancy, she took thalidomide, an antinausea drug (also marketed in Germany as
a sedative). It was just becoming apparent then that thalidomide is a teratogen (“mon-
ster former”) that produces babies with missing arms or legs. (Thalidomide had been
tested on animals but not on pregnant animals. The tragedies it caused made the FDA
(Food and Drug Administration) test all future drugs on pregnant animals.)
Sherri Finkbine requested an abortion at a local hospital, ostensibly for her
health, but really to abort a fetus likely to be born without arms or legs. However,
the district attorney threatened to prosecute the abortion, so she flew to Sweden,
where therapeutic abortion had been legal since 1940. Swedish physicians then
aborted her fetus, which was severely deformed.
The case caused many people to demand legalized abortion. In the years pre-
ceding Roe v. Wade, 18 states liberalized laws about abortion. Hawaii began in 1970,
followed by Colorado, North Carolina, and California. Governor of California, Ron-
ald Reagan, signed its bill into law.
1968: Humanae Vitae
In 1968, five years before Roe v. Wade, Pope Paul VI issued his encyclical Humanae
Vitae that declared use of birth control to be a sin. The edict startled liberal Catholics
and drove them to defy church teachings. A quarter of a century later in 1993, Pope
John Paul II vigorously defended Humanae Vitae and its ban on birth control.26
The 1968 encyclical had an unintended effect: When they were not allowed to
teach about contraception at Catholic University in Washington, D.C., Catholic
priests Warren Reich, Albert Jonsen, William Curren, and Paul Tong, who later
married Rosemarie Putnam, current bioethicist Rosemarie Tong, left the priesthood
and Catholic universities. These apostates became founders of bioethics, a field that
tries to teach both sides of moral issues.
1973: Roe v. Wade
The decision of the U.S. Supreme Court in Roe v. Wade (1973) concerned “Jane Roe”
(Norma McCorvey) from Dallas, Texas. Wade was Henry Wade, district attorney of
Dallas County. When this case began in 1970, Norma wanted a safe, legal abortion
and could not get one in Dallas County, so she challenged the Texas law. (She later
recanted, becoming antiabortionist.)
The Supreme Court had already decided in Griswold v. Connecticut (1965) that
the Constitution’s implied right to privacy or liberty allowed couples to receive birth
control pills. The Court also saw this entitlement in 1942 in Oklahoma v. Skinner,
which noted a fundamental right to reproduction and control of one’s body in
blocking a law allowing involuntary sterilization of habitual criminals.
In Roe v. Wade, it decided that the same liberty included the right of a woman
to decide whether she wanted to stay pregnant or to abort her fetus, or, put differ-
ently, whether a state could pass a law prohibiting such abortions, which most had
previously done.
This new right was not unqualified. A woman’s right to abort her fetus was
balanced against the rights of the fetus to live, which expanded as its gestational
age increased. The Court decided that the state’s interest in protecting unborn life
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92 Chapter 4 Abortion: The Trial of Kenneth Edelin
becomes compelling at viability, such that after that point, their interest in protect-
ing unborn life allows states to pass laws banning most abortions.
In 1973, in Roe v. Wade, the Court used a trimester system to mark viability,
where viability divided the second from the third trimester of fetal development.
The Court defined viability as the point when a fetus is able to live outside the
mother’s womb. It placed viability between 24 and 28 weeks. A later decision by
this Court ignored the trimester system but retained viability as the key marker.
Note two things: first, a state may forbid abortion during the third trimester,
but need not. Second, even if states pass laws forbidding abortions in that trimester,
exceptions must be allowed to preserve the life or health of the mother.
Antiabortionists argue that this permission constitutes a loophole justifying any
abortion. Two physicians can often be found who will say that continuing the preg-
nancy would endanger the mother’s health.
Abortion Statistics
After abortion became legal, American women had about 1.5 million abortions per
year, a figure that remained steady for a decade.27 During the past decades, the
number has steadily dropped. The exact number of abortions per year is controver-
sial. The Centers for Disease Control is required by federal law to track this number
and states that in 2012, the figure in America had dropped to slightly less than
700,000.
ETHICAL ISSUES
Edelin’s Actions
Edelin waited a long time before he removed Evonne’s fetus. Even if he was inno-
cent of any legal charge, were his actions ethical? As Nolen said, all he had to do
was remove it, slap it on the bottom, and it would have lived. If it had trouble
breathing, he could have given it oxygen or technical assistance.
The baby may have been healthy and someone may have adopted it. If Evonne
had wanted the baby and the baby had been born premature at this time, Edelin
certainly would have done everything to keep it alive. Should a life be so precari-
ously valued merely because a teenage mother doesn’t want it? Because a physician
won’t take it out of the womb and slap its bottom?
Personhood
What is a person? With abortion, some philosophers draw a distinction between a
person and a human being. They argue that although a fetus is human, it does not
meet certain criteria of personhood and that since a fetus is not a person, it does
not have a right to life. In this sense, human is a factual term, whereas person is an
evaluative term.
The late Mary Anne Warren defends a cognitive criterion of personhood.28 Accord-
ing to her, to be a person is to be able to think, to be capable of cognition. What
separates a person from a rat is certain capacities—for reasoning, self-awareness, use
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Chapter 4 Abortion: The Trial of Kenneth Edelin 93
of language, agency, and consciousness. Warren claims that none of these capacities
alone is sufficient for cognition; rather, these capacities as a group define the core
criterion. A being lacking all of these capacities fails to be a person. So a first tri-
mester fetus (when most abortions are done) for her is not a person.
The cognitive criterion may be both too broad and too narrow. It seems to admit
some beings that we don’t traditionally regard as persons: Some chimpanzees com-
municate, are conscious, may reason, and may be self-aware, yet we don’t ordinarily
consider them persons. (Perhaps, though, we are prejudiced against chimpanzees
and the cognitive criterion should make us reconsider our views.)
The cognitive criterion may also be too broad if it implies that society should
not protect human beings in the late stages of Alzheimer’s disease, permanently
comatose patients, or anencephalic babies. Philosophers such as Peter Singer argue
that such beings are not persons and do not deserve special protection.29
Personhood as a Gradient
Why does personhood have to be all-or-nothing? In practical reasoning, the all-or-
nothing fallacy consists of treating complex issues as if they have only two simplistic,
extreme answers when in fact there are many compromises in between. Often,
practical solutions reside not on opposite poles but in areas in the middle.
Biologically, we know that the human embryo develops by degrees during the
first trimester into a fetus, and then over the next trimester, the fetus grows into
viability, and finally, during the last trimester, into a baby. No single event or day
along this nine-month journey marks the day of personhood. The most accurate
view is that personhood accumulates by degrees over time.
On this view, a 2-year-old is more of a person than a newborn baby, and a
26-year-old at the height of his or her powers and health is more of a person than
a 2-year-old. If personhood depends on capacities, then a human at maximal capac-
ities is more of a person than a human with few capacities.
At the end of life, people lose personhood by degrees, especially with diseases
that rob them of their minds. A 90-year-old man who once had an IQ of 140 is only
“half the man he once was” at age 90 with initial Alzheimer’s and an IQ of 70.
We think of personhood as all-or-nothing for two reasons. First, some people
believe that a metaphysical event occurs in which human bodies get ensouled or
where a soul departs. Before that event, there is no personhood and no moral value,
and after that event, there is.
Second, people confuse personhood with moral concern. If granddad with Alz-
heimer’s at 90 is only half the person he once was, that does not mean we owe him
only half of our previous concern. Indeed, humans who have lost their former
capacities may need more concern than those at maximal capacity. Who is a full
person differs from whom we care about.
That’s also true for nonhuman animals. Some of them may function in families
as only semi-persons, but they may be as high on our scale of concern as are our own
children.
In biology, humans evolved on a gradient by degrees from other primates, and
primates in turn from lesser organisms. In biology, all life is an evolving continuum,
connected by common ancestors and by degrees, not huge leaps.
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Nevertheless, the gradient may raise as many problems as it solves. If end-stage
Alzheimer’s patients have lost 99 percent of their cognition, should they be killed?
If baboons share 99 percent of their genes with humans, should they be protected
as persons?
The Deprivation Argument: Marquis and Quinn on Potentiality
If we accept the cognitive criterion, a problem arises. If cognition makes people
valuable, is it wrong to deprive beings of potential cognition?
Philosophers Don Marquis and Warren Quinn argue this way. They start with
two premises: first, what is wrong about killing a person—such as a college student—
is depriving him of future cognitive experiences; second, what is wrong about killing
an adult matches what is wrong about killing fetuses.30
This deprivation argument is an interesting one, and many people accept their
first premise. Other explanations of why it is wrong to kill persons—that killing
violates peoples’ rights, for instance, or that killing is against God’s will—beg the
question: Phrases such as “violation of rights” and “against the will of God” are
simply other ways of saying that killing is wrong.
As for the second premise, it does seem that what is wrong with killing a com-
petent, adult human is depriving an adult who strongly desires to go on living.
Assume his family strongly desires this too. Killing him thwarts the desires of all
these people. Moreover, because almost everyone in society wants to continue liv-
ing, the murder of anyone threatens us all, making us fear for our lives.
But let’s analyze the second premise: Can a being like an early fetus, without
an already existing self or identity, have a personal future of which to be deprived?
Marquis’s and Quinn’s second premise may be vulnerable.
Consider an analogy: Imagine an omnipotent deity—God—who creates a uni-
verse and considers creating a second parallel universe but then decides against it.
Now imagine a powerful evil force—Satan—who wants to destroy the existing uni-
verse. It seems that destruction of the existing world by Satan would be wrong; but
it does not seem wrong for God to refrain from creating a second world. Although
God has disallowed a vast amount of cognitive experiences in the parallel universe,
he has neither done any wrong nor wronged any person in not creating it. In the
same way, failing to allow the potential cognition of a human 10-week embryo to
come into existence wrongs no existing person.
Could you imagine yourself as an embryo and feel sad because you have had
been aborted and not come into existence? No, that is not fair. It puts one’s self
erroneously into the picture when, by definition, that self will never exist.
What about contraception or masturbation? This objection is intended as a
reductio ad absurdum of the idea that we should bring into existence beings with
future cognitive experiences. As either of these prevents potential persons from
coming into existence, are they wrong? Probably not. They seem to be a straw
man—a false opponent, too easily refuted. No antiabortionist wants to produce bil-
lions of extra people and once conception occurs, things do seem different as a
distinct human life has started.
Indeed, pro-life champions see each particular person as valuable from concep-
tion. Federal Judge John Noonan advocates a genetic criterion of personhood and
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Chapter 4 Abortion: The Trial of Kenneth Edelin 95
argues that when sperm and egg meet and merge genes, a genetically unique
individual is created. The resulting embryo has all the potential in its DNA to be a
full person, provided that it finds a nurturing uterus.31 This seems to be the root
idea behind the objection to using human embryos in medical research or using
them as little factories to make embryonic stem cells (see Chapter 6).
But is potential to become a person the same as being a person? What about the
thousands of frozen embryos stored around the world? If some woman doesn’t
adopt them and implant them in her uterus, they will eventually deteriorate and
die. Do we allow thousands of “persons” to die by not adopting them?
Another problem with the genetic criterion is that it collapses the distinction
between being human and being a person—as we realize when we consider that a
brain-dead human has a unique set of genes. Moreover, through human cloning,
99.9 percent of his genes could be replicated one day, and would that imply that
he has been 99.9 percent resurrected? That’s unlikely, because what most of us want
by immortality is not for our genes to continue but for ourselves to do so, that is,
our memories and our present desires that exist in that bundle of perceptions we
call “ourselves.” So these implications seem to be a reductio ad absurdum of the
genetic criterion.
A third possible criterion for personhood might be called the neurological crite-
rion. This minimal version of the cognitive criterion defines a person as a human
being with a detectable brain wave. This simple standard applies to many issues of
medical ethics; it recognizes as persons both quasi-anencephalic babies and adults
in persistent vegetative states. The neurological criterion would consider a fetus a
person after it develops brain waves at about 25 weeks.
Viability
The concept of viability is vague. A vague concept is one with no sharp boundaries,
for example, baldness. When does viability begin? In Roe v. Wade, the Supreme
Court said only that viability is “usually placed” at about 28 weeks, but “may occur
earlier, even at 24 weeks.”
In Edelin’s trial, District Attorney Newman Flanagan seized on this vagueness
and tried to establish that Evonne’s fetus had been viable. One antiabortion physi-
cian testified that a 12-week-old fetus could live outside the womb. But for how
long? Only a few minutes, the physician answered.
The defense attorney, William Homans, countered by asking the physician how
he defined viability; the witness replied, [viability is the] “capacity to survive [out-
side the womb] even for a second after birth.” Homans got several obstetricians to
admit that they had never known a fetus to survive for even a few days outside the
womb before 24 weeks of gestation.
Remember that legally, viability didn’t matter in this case. Even if Evonne’s fetus
was viable, if it didn’t exist outside the womb, no charge of manslaughter could be
brought.
On the other hand, legality isn’t ethics. Viability matters a lot to ethics. It’s one
thing to abort a tiny fetus at 13 weeks with no chance of living on its own; it’s quite
another at 24 or 26 weeks when continued life is possible. That’s one reason why
many physicians refuse to perform late-stage abortions.
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Edelin’s critics knew exactly what was meant by viability: the ability to survive
independently of the mother. In reality, some fetuses that are born early are not
viable: They will die no matter how hard physicians try to keep them alive. Others
will survive and will do so only if given the chance.
To Edelin’s opponents, the point was that he had never tried to determine via-
bility. His supporters replied that he had not tried because the whole point of abortion
is to kill a fetus. The point is not to look inside the uterus, see if the fetus is viable,
and if it is, rescue it.
The Argument from Marginal Cases
In the Edelin case, one question that arose was, “Where do you draw the line?”—that
is, the line between fetuses which may and may not be aborted. Reasoning based
on this kind of question is called the argument from marginal cases, and it is one of
the most widely used ideas in ethics.
With abortion, the argument from marginal cases is as follows: Beings at the
margins of personhood cannot be nonarbitrarily distinguished from those at the
core. If it’s wrong to kill a newborn baby, it’s wrong to kill it the day before it’s
born, and so on, being wrong to kill the growing being anytime after conception.
This argument can be used against the gradient of personhood. Where pro-
choice advocates say an embryo is not a baby, antiabortionists point to the smooth
continuum and say there is no place to draw the line. No matter what week of
gestation we consider, it is arbitrary to make that week the marker of personhood,
because the fetus of a week earlier has almost the same qualities. Whatever time or
marker is chosen, someone can always ask: Why not choose the week before or
after? (This reasoning also drives conceptual slippery slopes.)
Is the argument from marginal cases a good one? Consider an analogy with the
color spectrum: Although each shade in the spectrum resembles the shades next to
it, we can distinguish widely separated colors. Similarly, a full-grown oak tree differs
from an acorn, even though an acorn becomes an oak by continuous growth. Sim-
ilarly, we can distinguish an 8-cell human embryo from a newborn baby. Marginal
cases do not make distinctions impossible.
In Roe v. Wade, the Court said that in the first two trimesters, the interests of
competent adults to control their bodies outweigh the growing interests of fetuses
to live. But it could have equally stressed a continuum of development from embryo
to birth, such that fetuses have some rights in the second trimester, such that only
very strong reasons justify abortions then. Especially with abortions available now
in the first trimester, and with genetic screening available then for many common
conditions, late-second trimester abortions seem less justified, especially as the fetus
has more of those qualities that make it a person.
Thomson: A Limited Pro-Choice View
Suppose we admit that the fetus in the Edelin case was a person. Does it follow
that killing it was immoral? Philosopher Judith Jarvis Thomson says, “No.”32
Imagine you have been admitted to a hospital for an operation and awaken to
find yourself hooked up to a famous violinist. His kidneys have failed and his blood
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is entering and leaving your body through tubes. Without your permission, your
kidneys have been used to keep the violinist alive.
Thomson famously argues that it is immoral for the hospital to force you to keep
the violinist alive. Although it would be saintly of you to agree to stay, you are not
obligated to do so. Why? You did not consent to have your body burdened this way;
no one else has a right to force you to use your body to keep another person alive.
Just as the violinist cannot demand as his right that you keep him alive by
allowing your kidneys to be used, so a fetus has no right to demand that a woman
keep it alive. For Thomson, the most telling case is rape, because a rape victim has
not consented to sexual intercourse or conceiving a child. She thinks a similar
argument applies when a woman has used contraception responsibly but it fails.
Thomson’s argument is an example of reasoning by analogy. The violinist’s
dependence on the other patient is analogous to the fetus’s dependence on the
mother. In analogical reasoning, the closer the fit between the two things compared,
the stronger the inferred conclusion is supported.
Philosopher Frances Kamm objects to Thomson’s analogy. Kamm argues that
the dialysis patient can simply detach herself and that such detachment is not like
killing a fetus. Since something active must be done to end a fetus’s life, for a proper
analogy, Kamm says, imagine the violinist blocking the patient’s way out of the
room so that the patient could escape only by cutting up the violinist.33
The above arguments suggest abortion as self-defense. In the sixteenth century,
theologian Thomas Sanchez used Augustine’s doctrine of just war to identify an
unwanted embryo growing in a fallopian tube as an unjust aggressor against the
mother’s life. So Sanchez maintained that a mother could kill such a lethal embryo
in self-defense.34
Feminist Views
One feminist writer argues that the key question about abortion is whether women
should be forced to bear children in a way in which men are not. If an embryo is
a person who has a right to life at the mother’s expense, then women will always
be potential slaves of biological reproduction:
With all the imperfections of our present-day attitudes, I’m still a lot better off in
terms of the sexual choices I have than women of my mother’s generation. I was a
lot better off after the sixties than I was before then. What sexual freedom I now have
has been very hard-won. I wouldn’t give it up for anything. . . . There is a larger crisis,
one that has to do with the tensions between feminism and the backlash against it.
On the one hand, society is encouraging sexual freedom; on the other hand, it’s
punishing people for indulging in it and not emotionally preparing them for it. Both
women in general and teenagers in particular are caught in the middle.35
Genetic Defects
Genetic testing of embryos and fetuses can reveal worrisome future genetic condi-
tions in babies, such as cystic fibrosis, Tay-Sachs disease, sickle cell anemia, Down
syndrome, and spina bifida. Medicine now allows testing in the first trimester of
fetal development, allowing abortions at the usual time after a positive result.
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Some people regard such a result as the most legitimate reason for abortion;
others fear that such results will create a stealth eugenics movement.
God Must Want Me to Be Pregnant, or Else I Wouldn’t Be
Some people believe that each human pregnancy happens for a reason. Each human
embryo that has been conceived and survived to implant itself in the uterine wall
was meant by God to have been created at this place and time. Any interference
with the growth of that embryo would thwart God’s plans. As one sometimes hears,
“God must mean for me to be pregnant, or else I wouldn’t be.”
Two replies can be made to this view. First, how does a woman know God’s
will about a particular pregnancy? Unless God speaks to her directly, how can she
just assume that planning when to have children is not God’s will for her? How does
she know that God does not want her to do what she believes will be best for her,
now and in the future?
Second, such a view is fatalistic in one’s personal relation to God. It seems
reasonable to ask, “Why must I accept everything that happens? If everything comes
from God, doesn’t the choice to have an abortion also come from Him? Why make
the fatalistic assumption that one can follow God’s will only by accepting preg-
nancy? Why can’t a reasoned choice to have an abortion also reflect God’s will?”
A Culture of Life or a Culture of Death?
By 2016, after 43 years of legalized abortion, and with at least 700,000 abortions on
average a year, American women had aborted at least 54 million human fetuses.
Worldwide, the figure is probably a billion. Pro-life champions argue that such a
tsunami of abortions has created a “culture of death,” one that has encouraged the
legalization of assisted suicide for terminally ill patients in several states.
As noted in earlier chapters, it is easy to push a false autonomy that masks
underlying scarcities for the disabled or lack of treatment of symptoms for the
dying. Too often, death seems the easy way out. Is this true, too, with abortion?
Take the Edelin case. The doctor did not have to produce a dead baby. He could
have saved the viable fetus and Evonne could have given it up for adoption. She
had a right to end her pregnancy, not to a dead fetus.
Since World War II, America has had no great crisis such as a world war or
a great depression, but that may change in the future. Is our culture ready? If
millions of baby boomers need long-term care, will the culture help them or urge
them to take an early final exit? Has society’s pendulum swung too much toward
death?
Suppose, for the last 50 years, no opposition to abortion had existed. What might
have happened? Abortion would be much more easily available, with perhaps every
small city having a clinic and competition bringing down prices. Instead of 54 million
abortions, we might have had 300 million. Would that have been a good thing?
Catholicism, conservative Protestantism, Islam, and Orthodox Judaism oppose
the easy availability of abortion. Are they not right to say, “This involves who we
are and we must oppose this?” Aren’t hospitals affiliated with such religions within
their rights not to provide abortions? As such, shouldn’t they oppose abortion as
good citizens? Just as Jews are horrified that so many stood by passively when
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Chapter 4 Abortion: The Trial of Kenneth Edelin 99
6 million Jews went to death in concentration camps, shouldn’t others be horrified
that 54 million fetuses never got a chance to live?
On the other hand, perhaps all these should be seen in a wider context. The
world is overpopulated. Extra people pressure the environment with more mouths
to feed, more cars emitting noxious gases, and more consumption of scarce water.
Suppose contraception was still banned. Then 1 billion more people would exist.
Would that be a good thing? All unchosen, unwanted? Yes, contraception and abor-
tion prevented many people from coming into existence—prevented, as Marquis and
Quinn would say—many future cognitive experiences from existing, but is that really
all bad?
Abortion and Gender Selection
Gender selection-plus-abortion has been a problem in countries such as China, the
Republic of Korea, and India. For centuries, parents there have seen females as less
desirable than male children. Using sonograms, many families aborted female
fetuses to try again for a male child.
Because X chromosomes weigh more than Y chromosomes, a flow cytometer can
separate heavier from lighter sperm, producing accurate results 90 percent of the
time. Although intended for use in pre-implantation genetic diagnosis, this technol-
ogy may be used to select male babies, making gender selection cheap and easy.
Despite laws that ban testing for sex in India and China, at least 160 million
females there are missing. After decades of such practices, in China, in 2012,
never-married men outnumbered their female counterparts 124 to 100.36 In 2016,
1 million excess Chinese males cannot marry. Both Northern India and China con-
tain large bands of young men who will never marry, leading to social discontent
in societies where marriage, family, and children are highly valued.
Sex selection is sexist and leads to imbalances of the sexes in the population. Iron-
ically, this has led existing Chinese women to be very selective about who they marry.
Abortion as a Three-Sided Issue
Many people living in a tolerant democracy, where individual liberties are res-
pected, fail to understand how they got where they are or to understand the larger,
worldwide picture. In the United States, they forget that our modern policy of
individual rights and personal liberty represents a hard-won victory that citizens of
many other countries never achieved.
For instance, in China, if they become pregnant before their mid-20s or after
they already have a child, beginning in 1979—when the government imposed a limit
of one child per family—thousands of women underwent forced abortions—a prac-
tice that continued until 2015. In Romania, dictator Nicolae Ceaușescu (1965–1989)
denied millions of women contraception or abortions wanting a larger population
but resulting in thousands of unwanted babies dumped into state orphanages (more
about this in Chapter 9 on Medical Research on Vulnerable Populations).
Perhaps this ignorance explains why the media frame abortion as an issue with
only two sides: antiabortion versus pro-choice. In fact, the global picture of abortion
is three-sided, with two extremes and a compromise: forced birth versus forced abor-
tion, with individual choice as the middle ground.
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100 Chapter 4 Abortion: The Trial of Kenneth Edelin
Antiabortion Protests and Violence
During the 1980s, two Texans attacked several abortion clinics in Florida. In 1984,
protestors bombed or burned 24 abortion clinics, including one in Pensacola that
took place on Christmas morning and was described by one conspirator as a “birth-
day present to Jesus.”37
By 1990, public opinion had turned against antiabortion violence. As a result,
the antiabortion movement turned to Operation Rescue, an organization founded
by Randall Terry in 1988. Modeling themselves on the nonviolent demonstrations
in the South during the Civil Rights Movement, protesters practiced civil disobedi-
ence in front of abortion clinics. During the 1990s, they picketed the homes of
physicians who performed abortions.
Some killed to stop abortions. They killed physician David Gunn in 1993 as he
left an abortion clinic in Pensacola. In 1994, antiabortionist Paul Hill, a former
minister, killed physician John Britton and his security escort as they left an abor-
tion clinic in Pensacola. In 2003, Florida executed Hill for the murder.
In January 1998, an explosion rocked the campus at the University of Alabama
at Birmingham. Across the street at Ronald McDonald House and a block away
from a dorm, windows shook from the blast. When touched, a package outside the
small abortion clinic exploded, the dynamite inside causing hundreds of nails to
ricochet off a steel plate inside into the face, torso, and legs of Emily Lyons, a nurse
at the clinic, and killing Robert Sanderson, an off-duty Birmingham policeman. Due
to intense efforts a few blocks away at UAB hospital, Lyons survived.
An alert UAB student spotted Eric Rudolph leaving the scene and copied the
license number of his truck. Police searched for Rudolph for five years in the hills
of North Carolina. Arrested in 2003, he confessed in 2005 to bombing abortion
clinics in Birmingham and Atlanta, to bombing gay/lesbian nightclubs, and to
bombing the Centennial Olympic Park during the 1996 Olympics, where he killed
three people and injured 111 others. He is now serving life in a federal prison in
Colorado.
In 1998, antiabortionist James Koop crouched behind the backyard fence with
a high-powered rifle and shot Dr. Barnett Slepian through his kitchen window.
During the previous four years, snipers shot and wounded three Canadian physi-
cians. In 2009, physician George Tiller was killed in his church in Wichita, Kansas.
Both Slepian and Tiller had been targeted by antiabortion groups for decades and
had vowed not to stop providing abortions.
Live Birth Abortions and How Abortions Are Done
Attempts to abort late-term fetuses have sometimes resulted in live births. In 1977,
physician Ronald Cornelson testified in a California criminal court that after a
botched saline abortion resulted in a live-born 2.5-pound baby, his colleague William
Waddill had choked the infant and suggested injecting it with potassium chloride
to kill it.38 Tried twice for murder, both juries deadlocked on convicting Waddill. In
1979, at the University of Nebraska Medical Center, after an attempted abortion,
another 2.5-pound baby was born alive; purposefully left unattended, it died after
a few hours.
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Chapter 4 Abortion: The Trial of Kenneth Edelin 101
Because of such cases, physicians today rarely abort a fetus after 23 weeks. They
also rarely use prostaglandins to induce abortion because, although safer than suc-
tion or surgical techniques, they result in 30 times more live births.
For first-trimester abortions, the most typical technique was formerly injection
of saline or urea, followed by dilatation and curettage (scraping, a technique called
D&C), but D&C has been replaced by suction curettage or uterine aspiration. Phy-
sicians do most abortions in the first trimester.
For late-term abortions, dilatation and evacuation (D&E) is used: The fetus is
cut into parts and removed piecewise. To ensure that all the pieces have been
removed—since any fragments left behind would produce infection in the mother—
the dismembered fetus must be reassembled outside the womb. Late-second tri-
mester or third trimester abortions use hysterotomy, as in the Edelin case.
Because abortion is controversial, residency programs in obstetrics sometimes
offer no training in performing abortion. Some residents in obstetrics have demanded
such training.39
In 2005, a review of several hundred scientific papers concluded that nerve con-
nections in the fetal brain are not developed enough before 29 weeks for the fetus to
feel pain.40 As such, the authors concluded, aborting a fetus before this point caused
it no pain and no anesthesia need be used to spare the fetus pain.
Fetal Tissue Research
Tissue from aborted fetuses may help patients with neurological disorders such as
Parkinson’s disease. The tissue required for such neurological research must be adre-
nal tissue producing dopamine, and it must be obtained from fetuses whose gesta-
tional age is 8 to 11 weeks, since after 12 weeks the tissue begins to differentiate into
the normal cells of the brain and loses its elasticity. Treatment consists of dopamine
delivered as fetal cells: In the operation, a small hole is drilled through the patient’s
skull and fetal cells are dripped directly into the devastated area of the brain.
A panel of the National Institutes of Health studied this issue and concluded
that even if abortion were immoral, fetal tissue obtained from abortions could be
used for research if the woman’s decision to donate tissue was separated from, and
came after, her decision to abort.41 In 1993, President Clinton lifted the four-year
ban on fetal tissue research.
Emergency Contraception
In America, the traditional approach to preventing pregnancy has been either absti-
nence or contraception, with abortion as a backup. A middle ground exists between
these extremes, emergency contraception or “the day after pill.”
Emergency contraception has been used without publicity for 50 years in
America. It consists of taking a double dose of birth-control pills within 72 hours
after an act of unprotected sex, followed by a second dose 12 hours later.42 When
the first dose is taken within 72 hours after unprotected sex, emergency contracep-
tion reduces the risk of pregnancy by 75–90 percent.
Such pills contain estrogen and/or progesterone and block the release of the
egg from the ovary, block the movement of the embryo down the fallopian tube,
or prevent implantation of the embryo in the endometrium.
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102 Chapter 4 Abortion: The Trial of Kenneth Edelin
Emergency contraception requires a woman either to have birth control pills on
hand or to be able to obtain them 72 hours after unprotected sex. A woman cannot
wait for a pregnancy test because her urine changes chemically only after embryonic
implantation.
In 2006, the FDA approved Plan B, a progestin-only form of emergency contra-
ception, for over-the-counter sales to women over 18. In 2009, a federal judge
ordered the FDA to approve the same for 17-year-old women.
The American Medical Association defines pregnancy as beginning when the
embryo implants on the uterine wall. Others believe that pregnancy begins with
conception in the fallopian tubes, and as such refuse to prescribe IUDs (Intrauterine
Devices), which interfere with implantation.
In 2005, pharmacists at a Walgreens store in Illinois refused to fill prescriptions
for Plan B, considered to be an abortion agent.
Women physicians successfully sued Walgreens to make Plan B available at all
its pharmacies. Walgreens then fired pharmacists who refused to fill prescriptions
for Plan B, igniting a debate about conscientious refusal. This debate became moot
in 2013 when the FDA approved sale of Plan B without prescription for any woman
regardless of age. In 2015, birth control became available for women in Oregon over
the counter, and by the same year, half of American women with medical insurance
could get birth control without a co-payment.
Maternal versus Fetal Rights
In her 20s in 1989, Nancy Klein went into a coma at an early stage of her pregnancy.
Her physicians wanted to abort her fetus to increase her cerebral blood volume and
to awaken her. They were also reluctant to give Nancy certain drugs that might
injure a fetus brought to term. Antiabortionists went to court to block the abortion,
while Nancy Klein’s husband, Martin, pressed for it. Martin prevailed and physi-
cians aborted her fetus while protestors chanted outside. After 11 months, Nancy
emerged from the coma and now lives a normal life.
In 1985, Angela Carder in Washington, D.C., dying of a rare form of cancer, requested
chemotherapy and resisted a cesarean section to save her 26-week-old fetus. The baby
was delivered alive anyway, but died two hours later. Angela died two days later.43
Both cases raised the issue of who was the patient, the mother or the fetus.
Legally, the answer is clear. A fetus inside the womb is not a baby and not a person,
but the mother is a person, so her wishes rule. But ethically, things become murky if
either the mother is going to die or if the fetus is going to be born. But these “ifs”
are difficult to know in advance.
A flashpoint for maternal–child conflict concerns pregnant mothers using alco-
hol or illegal drugs. Fetal alcohol syndrome causes the most mental retardation in
children.44 Between 1987 and 1992, 160 women in 24 states were charged with
injuring a fetus during pregnancy by taking drugs such as cocaine.45
In 1993, the law tried to force Comelia Whitner to stop using cocaine for the good
of her fetus, forcing her to choose between mandatory drug rehabilitation and jail. The
South Carolina Supreme Court upheld the law in Whitner v. South Carolina (1997).
Critics said the law prosecuted pregnant African-American women using cocaine,
but not pregnant white women drinking alcohol, and claimed that prosecutors
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Chapter 4 Abortion: The Trial of Kenneth Edelin 103
exaggerated harm to fetuses during gestation from cocaine. The law’s defenders esti-
mated that 70,000 American women used cocaine while pregnant and agreed that
pregnant women abusing alcohol, whether Caucasian or African-American, should
also be prosecuted. Some wanted to prosecute smoking during pregnancy.
Viability
In 1983, Justice Sandra Day O’Connor predicted that medicine would push viability
“further back toward conception” and that the trimester system established in Roe v.
Wade would be on a collision course with itself. Her prediction has not come true.
Although medicine has made intense efforts to treat premature babies more
effectively, the consensus in neonatology is that “before 23 or 24 weeks, [the fetus]
simply cannot survive. And nothing that medical science can do will budge that
boundary in the foreseeable future.”46 The unsolvable problem is that even with a
respirator, the lungs are too immature to function earlier than at 23 or 24 weeks of
gestation, and certain essential organs, such as the kidneys, do not develop early
in pregnancy. This has also blocked development of an artificial womb.
This recently acknowledged fact weakens one argument against abortion.
Clearly, the argument from marginal cases must lose some of its force, since lung
viability has served for over 43 years as a practical indicator of viability and as a
mark of when a state can outlaw abortion.
In 1979, in Colautti v. Franklin, the Supreme Court made its major decision
about viability. It said that “the determination of whether a particular fetus is viable
is, and must be, a matter for the judgment of the responsible attending physician,”
thus precluding another case like Kenneth Edelin’s.
The Supreme Court Fine-Tunes Roe v. Wade
In the decades since Roe v. Wade, abortion-rights advocates have pressed for broader
protection and antiabortion forces have mounted legal challenges to the original
decision. All of these came to a head in 1992 with the Supreme Court’s decision in
Planned Parenthood v. Casey. The Court reaffirmed the “essential holding” of Roe v.
Wade, including “the right of a woman to choose to have an abortion before viability
and to obtain it without undue interference from the State.”47 This decision appeared
to say, “Here we stand on abortion, and we will hear no more cases challenging it.”
Since then, the Court turned down cases aimed at challenging Roe v. Wade. How-
ever, over the past decades, it has fine-tuned Roe v. Wade.
In 1976, in Planned Parenthood v. Danforth, the Court invalidated state laws
requiring a woman to get consent for an abortion from either a matrimonial or a
biological father. The Court held that such consent amounted to giving these men
a veto over the woman’s decision.
The Danforth decision also said that a state couldn’t pass a law giving parents
of teenage girls an absolute veto over a decision to have an abortion. Two later
decisions allowed a state, before a teenager’s abortion, to require the minor to
obtain the consent of one or both parents or required the clinic to notify one or both
parents. By 2006, 34 states had laws requiring a parent’s consent or notification
when minors sought abortions, although nine of those states did not enforce their
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104 Chapter 4 Abortion: The Trial of Kenneth Edelin
laws.48 Such laws had to have an escape clause where the minor could appeal to a
judge for an exception to parental notification or consent.
In Harris v. McRae (1980), the Court held that, although a woman has a right
to an abortion, she does not have a right to one at government expense. Congress
passed laws banning use of public funds for abortions for women unable to afford
them, and many states followed suit. Webster (1989) said that states may ban public
employees or public hospitals from performing abortions.
In Casey in 1992, the Court ruled that informed consent and a 24-hour waiting
period did not constitute an “undue burden” on women seeking abortions. Anti abor-
tionists said this change brought abortion into line with informed-consent requirements
for other surgical procedures. Pro-choice advocates pointed out that many surgical pro-
cedures would not occur if hospitals enforced a similar 24-hour waiting period.
As said, Casey signaled a pivotal affirmation of “the essential holding” of Roe v.
Wade that the right to abortion is grounded in the Constitution and a majority of
justices repeated what a previous Court had said in Eisenstadt v. Baird, “If the right
of privacy means anything, it is the right of the individual, married or single, to be
free from unwarranted governmental intrusion into matters so fundamentally affect-
ing a person as the decision whether to bear or beget a child.”
Partial Birth Abortions
Critics define as a “partial birth abortion” one that is performed in the third tri-
mester or especially just before birth. The phrase connotes the advanced state of
the fetus, and how, even on the gradient view, it is almost a person.
The rights of late-term fetuses arise in murders of pregnant mothers (e.g., Lacy
Peterson) and abortions in the late-third trimester. Killing a pregnant woman and
her child is a heinous crime, and to inflict greater punishments, people advocate
for a charge of double homicide. Similarly, few reasons justify killing a fetus after
eight months of gestation, and the methods to do so are grim and surgical.
Opponents of abortion hope that everyone can agree to protect fetuses from such
acts and push for changes to do so. Pro-choice advocates oppose such legal changes,
fearing a slippery slope to protecting the fetus from abortion at earlier stages.
State legislatures frequently have passed bills making such changes, but federal
courts have struck them down 18 out of 19 times.49 Why? Because a long legal
tradition has defined a baby as created at birth, not before, with only a criminal
charge being capable of being made against a baby, and courts have been reluctant
to overturn that tradition. To do so would be to go into territory where there is no
logical stopping point until before viability.
States Restrict Abortion Clinics
Faced with 35 years of defeats in federal courts, antiabortion activists focused on
state courts and state legislatures in closing abortion clinics. Activists pressured for
physicians performing abortions to have admitting privileges at a local hospital, an
almost impossible condition for clinics to fulfill because the physician performing
the abortions almost always does not live in the area (to avoid people picketing his
house or trying to shoot him). Many clinics closed in Alabama, Mississippi, North
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Chapter 4 Abortion: The Trial of Kenneth Edelin 105
Carolina, Pennsylvania, and especially in politically conservative “red” states, forc-
ing pregnant women to travel long distances to get an abortion, to wait 24 hours
and stay overnight to watch movies of movements of second-trimester fetuses, and,
in general, to make it more costly and emotionally traumatic to get abortions. Citing
the Kermit Gosnell case, opponents of abortions advocated Targeted Regulation of
Abortion Provider (TRAP) laws in 21 American states to try to force clinics out of
existence. Mississippi requires the doctor to be a board-certified OB/GYN.
In 2015, a group seeking to outlaw abortion, the Center for Medical Progress
(CMP), released videos that it secretly recorded using actors posing as representing
a biotechnology company interested in acquiring tissue from aborted fetuses and
talking to staffers from Planned Parenthood (PP). CMP alleged the videos showed a
“criminal conspiracy to make money off of aborted baby parts.” PP condemned CMP’s
allegations as false. The media extensively showed the videos and they featured prom-
inently in the fall 2015 debates among candidates for the Republican nomination for
president. In 2015, PP announced it would no longer accept reimbursement for fetal
tissue donations. On November 27, 2015, Robert Dear attacked a PP clinic in Colorado
Springs, killing a policeman and two civilians, wounding five other police officers and
four civilians, citing the video and calling himself “a warrior for the babies.”
Self-Administered Abortion by Telemedicine
Dutch physician Rebecca Gomperts used her Women on Web website to help the 40%
of women who live in countries (Latin America, Africa, Asia, and the Persian Gulf)
where abortion is either banned or almost impossible to get. In 2008, the World Health
Organization estimates that over 21 million unsafe abortions took place worldwide,
resulting in 47,000 deaths. Over 2,000 women a month email Gomperts and her staffers
at her telemedicine office in Amsterdam to find out how to end their pregnancies.
Gomperts helps women order pills of mifepristone and misoprostol from India
for $5 and sends them to the women with a tracking number, plus exact instructions
for taking the pills over 24 hours, with Dutch physicians monitoring everything that
happens via Skype and email. Female staffers help women taking the pills recognize
signs of trouble and tell them when, in emergencies, to seek medical help in their
own countries. (Treatment is the same as for a spontaneous miscarriage.)
In America, self-administered abortion-by-pills is growing in states that drive abor-
tion clinics out of business through TRAP (Targeted Regulation of Abortion Providers)
laws. After a brief, successful trial of telemedicine abortions in Iowa, Iowa Right to Life
got Republican governor Terry Blanshard in 2013 to shut it down. In 2014, the Amer-
ican Congress of Obstetricians and Gynecologists reviewed the evidence, concluding
that medical abortion by telemedicine could be “safely and effectively used.” With Plan
B now available in most American states without prescription for even teenage girls,
getting support while taking such pills with supportive women via the Internet may
create a wave of do-it-yourself abortions in the privacy of women’s residences.
In June 2016, the U.S. Supreme Court struck down Texas TRAP laws, ruling
5 to 3 that the laws were not intended to protect the health of women but to deter
women from getting abortions. As such, Justice Ruth Ginsburg wrote, TRAP laws
often constituted an “undue burden” on women seeking abortions and hence were
unconstitutional.50
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106 Chapter 4 Abortion: The Trial of Kenneth Edelin
FURTHER READING
Emily Bazelon, “The Dawn of the Post-Clinic Abortion,” New York Times, August 28, 2014.
Kenneth Edelin, Broken Justice, Martha’s Vineyard, MA: Pond View Press, 2007.
Rachel Benson Gold and Elizabeth Nash, “TRAP Laws Gain Political Traction while Abortion
Clinics—and the Women They Serve—Pay the Price,” Guttmacher Policy Review, vol. 16,
no. 2, Spring 2013.
Frances M. Kamm, Creation and Abortion, New York: Oxford University Press, 1992.
Don Marquis, “Why Abortion Is Immoral,” Journal of Philosophy, vol. 86, 1989, pp. 183–202.
Warren Quinn, “Abortion: Identity and Loss,” Philosophy and Public Affairs, vol. 13, 1984,
pp. 24–54.
Michael Tooley, Abortion and Infanticide, New York: Oxford University Press, 1983.
Mary Ann Warren, Moral Status: Obligations to Persons and Other Living Things, New York:
Oxford University Press, 1997.
DISCUSSION QUESTIONS
1. In the Edelin case, if the fetus had slipped out during the procedure and been
outside the womb, even attached to an umbilical cord, would it have been
illegal to kill it? Should that matter ethically?
2. How should “pregnancy” be defined? By formation of a unique embryo in the
fallopian tubes or by implantation of an embryo in the uterus?
3. How can anyone ever truly know what’s in the mind of another to judge some-
one by the doctrine of double effect? Someone may say he’s trying to save the
life (or health) of a pregnant mother, not desiring to end the life of fetus, but
who can tell? Isn’t this a fault of the doctrine?
4. Fetal sonograms are now being used to give pregnant women vivid pictures of
their fetuses in the first and second trimesters. Some women viewing such
pictures reverse their decisions to have abortions. Given that fact, should all
women planning abortions be required to view such live images?
5. Some women regret having abortions. What weight should we give such regrets
in public policy about abortion?
6. Is a fetus necessarily a person at birth? What’s so magical about birth? Maybe,
even on a gradient view, we should not declare personhood until much later,
say, six months.
7. “God must want me to be pregnant or I wouldn’t be.” Is this a fair view?
NOTES
1. Maggie Scarf, “The Fetus as Guinea Pig,” New York Times Magazine, October 19,
1975, pp. 194–200.
2. Ibid.
3. A. Philipson et al., “Transplacental Passage of Erythomycinan Clindamycin,”
New England Journal of Medicine 288, no. 23 (June 7, 1973), pp. 1219–1221.
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Chapter 4 Abortion: The Trial of Kenneth Edelin 107
4. Paul Ramsey, The Ethics of Fetal Research, Yale University Press, New Haven,
CT, 1975.
5. William Nolen, The Baby in the Bottle, Coward, McCann, and Geoghegan, New
York, 1978, p. 203.
6. Ibid.
7. Ibid.
8. Commonwealth v. Kenneth Edelin, Massachusetts Supreme Court 359, N.E.
2d, 1976.
9. Kenneth Edelin, quoted in Ob. Gyn. News, January 1, 1977, p. 1.
10. Quoted from Ramsey, p. 94.
11. Nolen, The Baby in the Bottle, p. 174.
12. Ibid.
13. Emily Langer, “Physician Kenneth Edelin, Noted Physician in Abortion Case,
Dies at 74,” Washington Post, January 1, 2014.
14. John Hurder and Trip Grabrial, “Philadelphia Abortion Doctor Guilty of Murder
of Late-Term Procedures,” New York Times, May 13, 2013.
15. Paul Badham, “Christian Beliefs and the Ethics of In Vitro Fertilization,” Bioeth-
ics News 6, no. 2 (January 1987), p. 10.
16. Michael Luo, “On Abortion, It’s the Bible of Ambiguity,” New York Times,
November 13, 2005, Ideas and Trends Section, p. 1, 3.
17. Paul Johnson, A History of Christianity, Atheneum, New York, 1983, Ch. 3.
18. John Connery, “Abortion: Roman Catholic Perspectives,” Encyclopedia of Bioeth-
ics 1, Macmillan, New York, 1978.
19. Robert W. Mulligan, S. J., Jesuit Community at St. Louis University, personal
letter to author.
20. Roe v. Wade, Supreme Court Reporter 93, 410 U.S. 151, pp. 709–762.
21. Barbara Ehrenreich and Deirdre English, For Her Own Good: 150 Years’ of Experts’
Advice to Women, Doubleday, New York, 1987, pp. 319–320.
22. Alan Guttmacher Institute, http://www.guttmacher.org/statecenter/spibs/spib_
MWPA .
23. Alan F. Guttmacher Institute, Abortion and Women’s Health, New York and
Washington, D.C., 1990, p. 27.
24. Centers for Disease Control, http://www.cdc.gov/mmwr/preview/mmwrhtml/
ss6015a1.htm?s_cid=ss6015a1_w.
25. A Private Affair, a 1992 movie about this case, starred actress Sissy Spacek as
Sherri Finkbine.
26. Peter Steinfels, “Papal Birth-Control Letter Retains Its Grip,” New York Times,
July 29, 1993, p. A1, 13.
27. Fact Sheet: Abortion Surveillance, June 7, 2002, Centers for Disease Control,
Atlanta, GA. For updates, see www.cdc.gov/mmwr/preview/mmwrhtml/
ss5407a1.htm.
28. Mary Anne Warren, “On the Moral and Legal Status of the Fetus,” Monist 57
(1973), pp. 43–61.
pen07945_ch04_084–108.indd 107 9/8/16 9:51 AM
http://www.guttmacher.org/statecenter/spibs/spib_
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6015a1.htm?s_cid=ss6015a1_w
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6015a1.htm?s_cid=ss6015a1_w
www.cdc.gov/mmwr/preview/mmwrhtml/ss5407a1.htm
www.cdc.gov/mmwr/preview/mmwrhtml/ss5407a1.htm
108 Chapter 4 Abortion: The Trial of Kenneth Edelin
29. Peter Singer, Rethinking Life and Death: The Collapse of Our Traditional Ethics, Text
Publishing, Melbourne, Australia, 1994.
30. Don Marquis and Warren Quinn, “Why Abortion Is Immoral,” Journal of Phi-
losophy 86 (1989), pp. 183–202.
31. John T. Noonan, Jr., “An Almost Absolute Value in History,” in John T. Noonan,
Jr. ed., The Morality of Abortion: Legal and Historical Perspectives, Harvard Uni-
versity Press, Cambridge, MA, 1970, pp. 51–59.
32. Judith Jarvis Thomson, “A Defense of Abortion,” Philosophy and Public Affairs
1, no. 1 (Fall 1971), pp. 47–66.
33. Frances Kamm, Creation and Abortion, Oxford University Press, New York, 1992.
34. Connery, “Abortion: Roman Catholic Perspectives,” pp. 9–13.
35. Ellen Willis, “Harper’s Forum on Abortion,” Harper’s Magazine, July 1986, p. 38.
36. Ross Douthat, “160 Million and Counting,” New York Times, June 27, 2011,
p. A10; “Gendercide,” The Economist, March 6, 2010, p. 13.
37. “Explosions over Abortion,” Time, January 14, 1985, p. 17.
38. Jeff Lyon, “Doctor’s Dilemma: When Abortion Gives Birth to Life, Physicians
Become Troubled Saviors,” Chicago Tribune, August 15, 1982, Sec. 12, p. 1, 3.
(A 2.5-pound baby may be viable; jockey Willie Shoemaker, born prematurely,
weighed this much and was kept warm in a shoebox in an oven.)
39. Linda Villanova, “Newest Skill for Future OB/GYN’s Abortion Training,” New
York Times, June 11, 2002.
40. Susan Lee et al., “Fetal Pain: A Systematic Review of the Literature,” Journal of
the American Medical Association 294 (2005), pp. 947–954.
41. Consultants to the Advisory Committee to the Director, National Institutes of
Health, Report of the Human Fetal Tissue Transplantation Research Panel, 1,
National Institutes of Health, Bethesda, MD, 1988.
42. For costs and various kinds of pills, Google “Planned Parenthood” and “Emer-
gency Contraception.”
43. Kenneth Jost, “Mother versus Child,” American Bar Association Journal, Vol. 75,
No. 4 (April 1989), p. 86.
44. E. Abel and Robert Sokol, “Fetal Alcohol Syndrome Is Now the Leading Cause
of Mental Retardation” (letter), Lancet 8517, November 22, 1986, pp. 898–899.
45. Associated Press, “Mother Gets 6 Years for Drugs in Brest Milk,” New York
Times, October 28, 1992, p. A11.
46. Harold Morowitz, “Roe v. Wade Passes a Lab Test,” New York Times, November
25, 1992, p. A13.
47. Planned Parenthood v. Casey, excerpts quoted from New York Times, June 30,
1992, p. A8.
48. “Restrictions on Young Women’s Access to Reproductive Services,” Center for
Reproductive Rights, June 2006, Item F010, www.crlp.org/tools.
49. Hadley Arkes, “Courts Strike Down Laws against Partial-Birth Abortion,” Wall
Street Journal, December 17, 1998, p. A31.
50. Whole Women’s Health v. Hellerstedt 579 U. S. Supreme Court, (2016).
pen07945_ch04_084–108.indd 108 9/8/16 9:51 AM
www.crlp.org/tools
Between 1978, which saw the world’s first test tube baby, and 2008, which saw
“Octomom” Nadya Suleman add to her brood of test-tube-produced kids, assisted
reproduction raised many ethical issues. This chapter discusses cases spanning over
40 years, including Louise Brown’s birth, surrogate mothers, buying eggs of younger
women, the McCaughey septuplets, and older women having children (such as
Carmen Bousada, who died at age 69 after giving birth at 66).
THE OCTOMOM AND THE GOSSELINS
Nadya Suleman, 32 years old of Whittier, California, in 2008 had six embryos left
over from previous in vitro fertilization (IVF) treatments with fertility physician
Michael Kamrava. She did not want the remaining embryos destroyed and under-
went another cycle of IVF to have all of them implanted. Two of the six embryos
split into twins, resulting in a total of eight embryos. When sonograms in the first
trimester revealed at least five fetuses, Suleman refused reduction and on Janu-
ary 26, physicians delivered eight babies.
Much criticism focused on Dr. Kamrava, who implanted Suleman not once but
twice with six embryos. He certainly breached the guidelines of the American Society
for Reproductive Medicine, which recommends implantation of ideally just one
embryo and permissibly two. Because Nadya already had children from previous
cycles of IVF, and because two of these children were disabled, for Kamrava to implant
six more embryos was unethical and likely created even more disabled children.
The year 2009 also saw another bad situation involving Kate and Jon Gosselin
in suburban Pennsylvania. A labor-and-delivery nurse and a network engineer, the
two married in 2001. The Gosselins had a family of twin girls (born in 2001 from
artificial insemination by husband or “AIH”) when sextuplets (three girls and three
boys) were born to them in 2004. Fertility doctors started the sextuplets by injecting
Kate with drugs to stimulate her ovaries and afterward introduced Jon’s sperm.
Informed of six pregnancies, the Gosselins chose not to reduce and all six babies
were delivered by caesarean in 2004.
C H A P T E R 5
Assisted Reproduction, Multiple
Gestations, Surrogacy, and
Elderly Parents
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110 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
Jon & Kate Plus 8 filmed the controlled chaos of this family of 10 and became
a hit show in 2007 on cable television. Putting the kids on television also glamorized
having multiple babies. Shortly after birth, a plastic surgeon did free plastic surgery
to correct the distortion of Kate’s stomach from gestating six babies.
In 2009, after both had extramarital affairs, the Gosselins divorced. Thereafter,
Jon seemed to abandon his responsibilities as a father. Both parents seemed imma-
ture and not focused on the best interests of their eight children. Kate went on
television in 2010 on Dancing with the Stars and had the kids on new reality TV
shows, Twist of Kate plus updates called Kate Plus 8, but in 2011, low ratings sank
the shows and, in subsequent years, Kate scrambled as a single mother to find the
money to raise eight kids. Kate returned to television in 2015 for a reunion but still
feuded with Jon over custody of their children. The September 5, 2016 issue of
PEOPLE magazine featured a story on the 10-year anniversary of the original show
on the Discovery Health Channel in May, 2006. The article revealed for the first
time that Colin has special “educational and social challenges” and attends a sepa-
rate school for special-needs children. (Documenting the outcomes in famous cases
is a hallmark of this text—outcomes that often cannot be known until many years
later.)
Meanwhile, Nadya Suleman wanted her own reality show, but it didn’t happen.
She began to work occasionally in the adult entertainment industry. In 2012, she filed
for personal bankruptcy; authorities auctioned her $1 million home; her children lived
on public assistance; and she spent a month in rehab for addiction to Xanax.
LOUISE BROWN, THE FIRST TEST TUBE BABY
Test tube conception is the popular name for IVF. (“In vitro” means “in glass.”) It
involves fertilization outside the womb, in a Petri dish.
Lesley Brown, the mother of the first child conceived in vitro, had damaged
fallopian tubes from ectopic pregnancies. For her IVF, scientists removed one of her
eggs and placed it in a Petri dish, where they mixed her husband John’s sperm to
form an embryo. With the embryo returned to her uterus, Lesley then carried it to
normal gestation.
In such development, sperm move up the vagina, through the uterus, and into
one of the narrow fallopian tubes. The two tubes, the size of the lead in a mechan-
ical pencil, can each carry an egg from an ovary to the uterus.
A woman has all her eggs at birth, but only one egg is normally primed for
conception each month. Drugs such as Clomid and Pergonal stimulate the ovaries
to release more than one egg, a process called superovulation.
In at least 40 percent of pregnancies, and possibly as many as 70 percent, the
embryo fails to implant on the wall of the uterus, often because of genetic irregu-
larities. More commonly, the mix of hormones is not quite correct.
After one year of trying, about 1 married couple in 11 cannot conceive a child.
Infertility stems from many factors, including a woman’s age, damage from pelvic
inflammatory disease, previous abortions, uterine abnormalities, and low sperm
count or low sperm motility. Infertility is often blamed on the woman, but men
account for 50 percent of it.
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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 111
Two decades of research by Robert Edwards, a physiologist at Cambridge Uni-
versity, preceded the first IVF birth. Edwards’s work with mice in the 1950s had
taught him how to precisely balance hormones to induce ovulation.
In 1965, 13 years before the birth of Louise Brown, Edwards created a human
embryo after adding his own semen to a ripe human egg in a Petri dish.1 Edwards
thereby fulfilled one of the great fears about scientists: Lone scientist late at night in
his lab artificially creates human life, stealing mystery from creation. Perhaps Edwards
realized people would be frightened by his feat, so he destroyed the embryo. Later,
he tried to repeat it but could not. Nor did he announce to others what he had done.
In his research, Edwards needed to create many embryos and returned only the
healthiest to the uterus. To do so, he needed eggs from female volunteers. Entered
Patrick Steptoe, a gynecologic surgeon practicing in a small hospital near Manches-
ter, who became Edwards’ partner. Steptoe used a newly created laparoscope (a long
thin tube containing a lens with a light) to remove the eggs.
Over the next decade, the duo attempted IVF many times. In the first phase,
they implanted an embryo 41 times in a fallopian tube, but each time, it failed to
go farther. In the next phase, they recruited 100 infertile female volunteers and
implanted an embryo directly into the uterus of each. Their 102nd attempt resulted
in Louise Brown.
In 1977, Dr. Steptoe told Lesley she was pregnant. Before this, some women
had had eggs successfully fertilized in vitro, but all had lost the embryo. Lesley
made it to five months, and her amniocentesis showed a normal pregnancy (if it
had been abnormal, Steptoe would have aborted it). She spent the last month of
her pregnancy at Oldham Hospital under siege by the media.
Steptoe delivered the baby, a girl, by cesarean section on July 25, 1978. In order
to avoid reporters, he operated around midnight with only a few people present.
The Browns called the normal, 5-pound, 12-ounce girl Louise Joy, who the father
said was “beautiful, with a marvelous complexion, not red and wrinkly at all.”2 Imme-
diately after the birth, John Brown said, “For a person who’s been told he and his
wife can never have children, the pregnancy was ‘like a miracle.’ I felt 12 feet high.”
For Louise Brown’s birth, London newspapers ran huge banner headlines, “it’s
a girl!” “the lovely louise!” “baby of the century! joy to the world!”
One competitor who had hoped to be first to deliver an IVF infant dismissed
Steptoe’s achievement as a “cheap stunt.” Another criticized Steptoe for not reveal-
ing how many failures had preceded his success and for giving “false hope to mil-
lions of women.”3 But they missed the point: Louise Brown mattered not because
of her improbability, but because she proved that IVF could succeed.
Patrick Steptoe died at age 74 in 1988, a week before Queen Elizabeth II was
to have knighted him at Buckingham Palace. The same week, Robert Edwards
became a Fellow of the Royal Society, a great honor in the English scientific
community.
Louise Brown’s mother chose to have a second child, Natalie, by IVF in 1982.
In 1993, the three female Browns appeared on American television to support
research in assisted reproduction. At age 15, Louise was a chubby girl whose friends
teased, “How did you ever fit into a test tube?” In 2004, she married, with Edwards
attending her wedding. Her naturally conceived son was born on December 20,
2006. Robert Edwards died at age 87 in 2013.
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112 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
Harm to Research from Alarmist Media
New ways of making babies have always fascinated the media, whose approaches
to this subject have ranged from alarmist to naively uncritical.
Warren Kornberg, editor of Science News, wrote in a 1969 op-ed in the Los
Angeles Times that questions about assisted reproduction, cloning, and human genet-
ics raised questions “more important” than those raised by nuclear weapons.4
In his early years, Edwards worked on infertility at the National Institute
for Medical Research in London. A television show on IVF opened with pictures
of an exploding atomic bomb and the institute then suspended his funding.
Edwards claims that his scientific supervisor, who had also frozen sperm, flatly
told him his work was “unethical”; when asked “Why?” she only replied, “Because
it is.”5
Edwards left for Cambridge University, where he worked on a Ford Foundation
grant to study population control and fertility. Because his work offended some
people, the Ford Foundation stopped funding him in 1974.
The press incorrectly called Louise Brown a “test tube baby.” This term implied
something bizarre—that a baby had been created without egg or sperm. When Les-
ley first took her baby outside, neighbors expected to see a little monster.
The press equated means of overcoming infertility with genetic manipulation
and, as with cloning later, predicted creation of mindless slaves or dangerous super-
humans. The London Times equated IVF with state-controlled eugenics. In contrast,
John Brown saw IVF as “helping nature along a bit.”
Newspapers and television shows constantly compared IVF to Aldous Huxley’s
1932 novel Brave New World. Yet most had not read the book: The controls that
Huxley feared stemmed from psychological conditioning. Brave New World worries
about behaviorism, a school of psychology then as poorly understood as IVF was in
1978. Although Huxley wrote Brave New World to oppose taking away choice from
citizens, people cited his novel as advocating taking away choice.
Later Developments in Assisted Reproduction
The first IVF baby in America, Elizabeth Carr, was born in 1981. In America, in
2013, Centers for Disease Control and Prevention (CDC) says 467 clinics created
68,000 live-born infants, stemming from 191,000 cycles of assisted reproduction
technology (ART) and as of July 2014, over 5 million babies worldwide.6
Only 5 percent of babies today conceived by ART result from IVF. Less dramatic
techniques create most ART babies, such as egg stimulation and injection of con-
centrated sperm.
Unfortunately, for most of the past three decades, about 75 percent of couples
who pay for cycles of IVF spend from $12,400 per cycle for several cycles and go
home without a baby. In 2002, fertility clinics claimed that about 23 percent of
attempts at IVF allowed couples to have a baby, although the actual figure may be
more like 20 percent.7 Chances worsen for women over 40 and drop with each
unsuccessful attempt, from 13 percent on the first to 4 percent on the fourth.8 At
age 43, chances drop to almost zero. We read a lot about successful IVF, but hardly
anything little about couples for whom it fails.9
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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 113
Sperm and Egg Transfer
Sperm. Around 1850, physician J. Marion Sims, while practicing in Montgomery,
Alabama, artificially inseminated 55 infertile women with their husbands’ sperm
(AIH).10 He produced one pregnancy, though it later miscarried. Condemnation of
his work by other physicians forced him to stop. In the 1890s in America, critics
vilified Dr. Robert Latou Dickinson for practicing AIH, accusing him of abetting
“adultery.”11
It took another century for people to accept artificial insemination of sperm.
Had Sims paid his first sperm donor, his critics would have been legion. The net
result? Hundreds, maybe thousands, of couples in America and Europe remained
infertile, blaming each other for being barren, going childless not by choice but by
fate.
Today, most people accept insemination of sperm. Indeed, Americans have gone
from accepting (1) artificial insemination (AI) of a husband’s (AIH) sperm into the
wife’s womb, to (2) insemination of another donor’s (AID) sperm into a woman’s
womb, to (3) paying a man for use of his sperm to create a pregnancy, to (4) insem-
ination of anonymous donor sperm into unmarried women wishing to become preg-
nant, to (5) selection of sperm from a catalog of pictures of men listing their
achievements. Today, couples and single women can select sperm from men at
about 400 sperm banks, where sperm donors receive between $50 and $75 per visit
or where they have donated their sperm free.
Eggs. Australia’s Carl Wood in 1983 created the first human pregnancy from an
egg transfer. In the next 15 years, 6,000 middle-aged women gave birth using eggs
from young women.12
In the 1980s, scientists began gamete intrafallopian transfer (GIFT), which unites
sperm and egg not in a Petri dish but inside a fallopian tube, approximately where
normal conception takes place. A Belgian group in 1993 succeeded in using a single
sperm to fertilize an egg, a process called intracytoplasmic sperm injection (ICSI),
making it possible for one sperm to be used to achieve a pregnancy.13
The world’s first IVF child conceived with a young woman’s egg occurred in
California in 1984, but then eggs had to be removed cumbersomely under anesthe-
sia. The end of that decade saw another technological breakthrough when a thin
needle guided by ultrasound retrieved the eggs by going through a vaginal wall.14
That 10-minute procedure under light anesthesia could be done in offices, not oper-
ating rooms of hospitals, and changed the industry. By 1990, with a new supply of
young eggs, doctors showed that older women could gestate embryos.15
Because of assisted conception of twins to celebrities such to Celine Dion at 42,
Geena Davis at 48, Jane Seymour at 44, Holly Hunter at 47, and singletons in their
30s to Christie Brinkley and Angelina Jolie, today’s young women too often believe
they can wait to become mothers until their 30s. Most celebrities don’t disclose
their use of egg donors or how many failed IVF cycles they had (Celine Dion had
five before her twins). Only 8 percent of women at age 43 will have children with
their own eggs, because 90 percent of their eggs will be abnormal.16
But a woman over 40 can gestate embryos created from eggs of younger women,
giving the older woman a biological connection to the baby, creating a biogenetic
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114 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
child, one connected biologically and genetically to two different females. About 10
percent of IVF attempts today use such eggs. This works for women who have severe
genetic diseases in their families, who have eggs damaged by chemotherapy or
poisoning, who have had several miscarriages, or who suffer from premature
menopause.
Scientists once thought age of sperm or age of gestational mothers caused infer-
tility, but these can be overcome. The absolute barrier to successful gestation is age
of the egg, with rapid drop-offs as eggs deteriorate in women over age 31. As said,
an even bigger drop-off occurs for women over age 43.
Young eggs in older surrogates make a big difference. Using egg transfer, the
success rate for taking a baby home jumps to 60–80 percent and, more important,
40 percent regardless of the age of the female gestator, making egg donation the great
hope for many infertile couples.
Freezing Gamete Material
In 1997, the first birth using previously frozen human embryos occurred at an
Atlanta clinic run by Bruce Tucker.17 In 1990, two embryos were created from dif-
ferent eggs at a California clinic.18 One was implanted and became a baby; the other
remained frozen. Seven-and-a-half years later, doctors implanted the second embryo
and it became a male fraternal twin to his 7-year-old brother. Emma Davis was an
IVF baby born in Britain in 1989; her sister, Niamh, also created as an embryo in
1989, was born 16 years later in 2006.19 The record for such siblings created together
by IVF but born apart is 21 years.
In 2002, a California clinic began to freeze eggs of young women about to
undergo hysterectomy but who wanted to later bear children with surrogates.20 In
2007, other clinics froze ovarian tissue for women in order to preserve or delay
childbearing.21 Questions remain about how viable these eggs/tissue will be after
thawing.
When scientists store embryos and sperm, mishaps can occur. In the 1990s,
a white Dutch couple had nonidentical twins, one of them black. In 2002, a white
couple in London had black twins, because scientists implanted the wrong embryos.
(We’ll never know how many embryos got mixed up between same-ethnicity
couples.)
Stories abound about clinics implanting the wrong embryo in the wrong woman.
In 2009 in Ohio, technicians implanted someone else’s embryo into Carolyn Savage,
which also happened to “Anna” (who was granted anonymity), in Rome in 2014,
who carried twins. In 2013, Rifaat Salem allegedly implanted the wrong embryo
into Melissa Pineda, then aborted it by D&C without her permission. Such women,
often pro-life and desperately wanting a baby, then struggle with whether to gestate
a baby for someone else.
Freezing embryos costs $10,000 initially and then $500 per year for storage and
can create ethical dilemmas.22 Some couples do not want their embryos destroyed
and also do not want to donate them to other couples or to have them used for
research. Right-to-life groups in 2016 filed friend-of-court briefs in some cases, argu-
ing that conflicts should be resolved not in favor of gametic donors but under the
standard of best interests of the embryo.
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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 115
IVF pioneer physician Cecil Jacobson of Fairfax, Virginia, wrongly used his own
sperm instead of the intended fathers’ to create as many as 75 embryos throughout
the 1980s. In 1992, he went to jail for this. In the mid-1990s, Dr. Ricardo Asch at
University of California, Irvine, switched donor eggs around without women’s con-
sent and fled the country to avoid prosecution.
In 2013, scientists began to invent the EmbryoScope, allowing them to use
high-resolution photos to monitor development of individual embryos day-by-day,
enabling them to pick the best for implantation. An English study showed that
EmbryoScopes raised success rates by 50 percent.23
ETHICAL ISSUES
Payment for Assisted Reproduction: Egg Donors
Originally, young volunteers supplied eggs for older women, but altruism didn’t
meet the demand. Paying for eggs is euphemistically called “egg donation,” and in
America in 2016, clinics in New York City paid egg donors $8,000 per cycle.
Egg retrieval is more complicated than obtaining sperm. A woman takes drugs
daily for a month or more to induce superovulation, after which eggs are aspirated
as previously explained. Some people claim that the drugs increase risk of some
cancers over the life of the woman, but no long-term data support this claim.
In 1999, a famous ad ran in newspapers at Princeton and Yale universities,
stating that an anonymous couple would pay $50,000 for the eggs of a “woman over
six feet tall and with SAT scores over 1450.”24 Payment also runs high for donors
of Jewish or Asian background, because they donate less frequently.
Critics rarely complained when clinics paid males to donate sperm, even though
genetically sperm and eggs are both gametes and contain the same amount of
genetic information. Critics mainly condemn payment of women for eggs.
Payment for Assisted Reproduction: Adoption
Because roughly 1 out of 11 couples in North America is infertile after a year of
trying to conceive, and because IVF works for only 20 couples out of 100, infertile
couples create high demand for healthy, adoptable babies. Because most adopting
couples in North America are white and want a white child, demand for such babies
has skyrocketed.
Because of this demand, the average couple in 2015 seeking to adopt a baby
paid private agencies $28,000. In their quest for a healthy toddler, some couples
paid $100,000. Other couples paid on average more for an Asian baby and $1,000
for a black baby through an adoption program.25
Like transfer of eggs or organs, agencies do not technically sell babies, which
is illegal. But a new industry has sprung up that connects couples to pregnant
women who might put their babies up for adoption. According to one investiga-
tive journalist, “That has left only the thinnest line between buying a child and
buying adoption services that lead to a child.”26 The doubling of licensed child
placement has increased adoptions in North America in the last few years to
nearly 2,000.
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116 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
In 1993, Russia had no foreign adoptions, but in 2001, it placed more children
in America than any other country (990). Because of alleged abuse of adoptees,
including claims by an 18-year-old adopted teenager who returned after five years,
Russia in 2013 banned adoption by Americans, creating a scarcity of adoptable
babies. In 2011, the other top countries for adoption (and number adopted) were
Ethiopia (448), South Korea (280), China (278), Taiwan (88), Congo (48), and
Columbia (41).27
Although black critics have recently decried the lesser payments that seem to
demean black babies, virtually no one has condemned payment itself. No one has
criticized “pregnancy counseling centers” that encourage pregnant girls to give up
their babies for adoption, while charging $30,000 to couples who adopt those
babies.
Paid Surrogacy: The Baby M and Jaycee Cases
Fertilization of embryos outside the womb made it possible for another woman to
gestate an embryo to birth, creating so-called surrogate mothers, either for pay or
altruistically. For short, we’ll call them surrogates.
By 1986, several hundred women had helped infertile women gestate babies
when biochemist Bill Stern and pediatrician Elizabeth Stern hired Mary Beth White-
head for $10,000 to gestate an embryo created by his sperm and Whitehead’s egg
through artificial insemination. Giving birth on March 27, 1986, in Monmouth
County Medical Center in Long Branch, New Jersey, Mrs. Whitehead claimed to
have bonded with the Baby M, aka Melissa Stern, and refused to give her to the
Sterns. When Mr. Stern threatened legal action, Mrs. Whitehead fled to Florida with
Melissa but was discovered and returned to New Jersey. Whitehead’s case is called
traditional surrogacy. Today, most surrogates are only gestational surrogates and do
not contribute eggs.
At a trial in 1987, Judge Harvey Sorkow upheld the contract, said it wasn’t baby
selling, required Whitehead to hand over the baby, awarded her $10,000, and said
the baby should never see Mrs. Whitehead again. The New Jersey Supreme Court
in 1998 unanimously reversed his decision, declared Mrs. Whitehead the legal
mother with full visiting rights, and invalidated surrogacy contracts. Mrs. White-
head later became a well-known critic of surrogacy. Melissa graduated from George
Washington University and then wrote a master’s thesis on children of surrogacy
at King’s College in London, where she now lives.
Jaycee Buzzanca, aka “the child with five parents,” was born in 1995 from a
paid surrogate but became embroiled in a divorce between the would-be parents.
Jaycee was also conceived from sperm and egg other than from the parents who
hired the surrogate. A California Appeals Court ruled in 1998 that the parents who
hired the surrogate had to be responsible for Jaycee.
Critics commonly object to paid surrogacy as it is not best for the child. Paying
for gestation creates a confused identity for a child who has at least three, and
maybe five, parents. On the other hand, most cases of surrogacy do not involve so
many parents.
In 2013, surrogate Crystal Kelley refused to abort a fetus with severe heart
defects, a cleft palate, and a cyst in its brain.28 After multiple surgeries after birth,
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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 117
surgeons told the prospective parents that the baby would have only about a
25 percent chance of a normal life. This couple had contracted to pay Kelley $22,000
for the surrogacy and the contract contained a clause requiring abortion in case of
gross defects of fetus. They offered her $10,000 to abort, but Kelley refused. Then
the donors sued to get their already-paid $8,000 back and refused to be the legal
parents of a born-child. Kelley continued the pregnancy. Kelley gave birth in Mich-
igan, where surrogacy contracts cannot be enforced. Her baby at birth had holopros-
encephaly, where the brain fails to completely divide into distinct hemispheres, and
heterotaxy, where many organs develop in the wrong places. A Michigan couple
adopted the baby, who has had multiple surgeries, paid for by Medicaid at the
University of Michigan Medical Center. In 2016, states had vastly different laws
about surrogacy, with 21 having no law, nor case decision about surrogacy. Califor-
nia had the most permissive laws. Feminists, fearing exploitation of surrogates,
teamed up with right-to-life groups, who in turn feared the lack of protection for
extra embryos. They did this cooperatively in order to push through their common
goal of blocking laws in states that allow surrogacy. In 2016, Illinois’ law might be
a model, which accepts the reality of the practice, and requires psychological screen-
ing of all parties, a minimum age of 21 for surrogates, and an embryo created from
either egg or sperm of the would-be parents (and bans Baby M-type cases, where
surrogates supply the egg). By 2014, over 2,000 babies a year were being gestated
by surrogates in the United States.
Multiple Births: Before the Octomom and Gosselins
Although the Octomom and Gosselins made news in 2009, multiples and their
problems have had a sad history.
Births of multiples have been growing steadily since the birth of Louise Brown
in 1978. For most couples without reimbursement for IVF, taking the drug Clomid
is the easiest way to overcome infertility, and if that doesn’t work, Pergonal or
Metrodin is taken to stimulate the ovaries to release many eggs. However, introduc-
tion of sperm can fertilize one, two, or eight eggs, resulting in unwanted twins,
triplets, or bigger multiples.
IVF, in contrast, allows physicians to control how many embryos they implant,
with the ideal being implantation of one embryo per cycle.
In 1985, a Mormon couple, Patti and Sam Frustaci, conceived septuplets but
refused to have a reduction; four of their seven babies died and the three survivors
had severe disabilities, including cerebral palsy. In 1987 and with the help of
Pergonal, Ron and Roz Helms of Peoria, Illinois, had quintuplets, born 11 weeks
premature. One child spent a year in a neonatal intensive care unit (NICU),
another had seizures, and a third had cerebral palsy. The quints’ medical bills for
their first decade topped $3 million, paid for mostly by the Children’s Miracle
Network.
Multiple-birth babies are usually premature (each may weigh less than two
pounds), three times as likely to be severely handicapped at birth, and often spend
months in NICUs.
During gestation, nutrients and oxygenated blood in the womb are scarce (a
uterine lifeboat, if you will); thus, not all seven fetuses will likely emerge healthy.
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To prevent disabilities resulting from uterine deprivation, physicians recommend
selective reduction of all but one or two embryos.
In 1996 in England, after taking Merton and Pregnyl for two days, Mandy
Allwood released seven eggs, had sex, and all of her eggs were fertilized. A London
tabloid offered her big money for rights to her story but only if all her embryos
made it to term. This began the media’s exploitation of such mothers. Mandy went
and lost all seven.
In 1997, an Iowa couple, Bobbi and Kenny McCaughey in Iowa, used Pergonal
to superovulate Bobbi and introduced Kenny’s sperm, conceiving seven embryos,
refused to reduce, and chose to risk having disabled babies, claiming any bad results
were God’s will.
At their fourth birthday in 2001, the McCaughey septuplets lagged in develop-
ment and were not all potty trained. Joel suffered seizures; Nathan had spastic
diplegia, a form of cerebral palsy requiring botox injections (to paralyze spastic
muscles) and orthopedic braces. Alexis had hypotonic quadriplegia, a cerebral palsy
that causes muscle weakness. After two major orthopedic surgeries, at age 7, Nathan
still could not walk. For four years, Alexis had an indwelling feeding tube. Although
they homeschooled, the McCaugheys in 2006 began to send Nathan and Alexis to
a public school for developmentally challenged children. In 2014, five of the children
approached graduation from high school. Nathan and Alexis managed in
special-needs schools with cerebral palsy.29
In 1997, Jacqueline Thompson had sextuplets in Washington, D.C. After the
death of one child, the mother struggled to raise five teenagers.30 Unlike the
McCaugheys’, this single black mother’s story drew no offers of television appear-
ances or reality shows and few donations.
In 1998, octuplets—six girls and two boys—were born to Nigeria-born American
citizens Nkem Chukwu, age 27, and Iyke Louis Udobi, 41. In 2009, the Chukwus
tried to tour the world with their eight 10-year-old children under their theme,
“Promote Healthy Families,” but their tour did not garner fame and donations like
that of the Gosselins, the Octomom, or the McCaugheys.
The probability of an impaired baby varies directly with the number of embryos
allowed to gestate. In other words, if six are implanted, one is almost certain to be
born with cerebral palsy or blindness. Unfortunately, the chance of having any baby
at all with assisted reproduction also varies directly with the number of embryos
implanted—hence, the ethical dilemma of how many embryos should be implanted.
Older Parents
As said, by using eggs of younger women and ICSI, older people can create their
own children. In 1980, Carl Wood accepted a 42-year-old woman as his first IVF
candidate because of her increased chances of birth defects. She had a normal baby.
In 1993, a 59-year-old Englishwoman gestated twins from embryos fertilized by
her husband’s sperm and eggs donated by a young woman. In 1998 and at age 57,
American Judy Cates did the same.31
In 1990, one-third of American assisted reproduction (AR) clinics excluded
women over 40. By 1998, the practice of using eggs of younger women had moved
such limits to age 55.
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Several births pushed this debate into public consciousness. In 1997, after lying
about her age, 63-year-old Arceli Keh gave birth to a healthy baby girl. In 2005,
66-year-old Adriana Iliescu gave birth to a healthy baby daughter in Romania. In
2004, two 57-year-old women, Aleta Saint James, unmarried, and Rosee Swain, a
great-grandmother, gave birth to twins using IVF and eggs from younger women.
In 2006, at age 67 and after having lied about her age at a fertility clinic in Los
Angeles, Maria Carmen del Bousada gave birth to twins in Barcelona, Spain. Two
years later, she died of cancer, leaving two orphans. In 2008, an Indian woman who
claimed to be 70 gave birth to twins in Uttar Pradesh, India.
Should society encourage seniors to have children when they may be dead
before their children reach 18? In 1968, at age 66, Senator Strom Thurmond married
a 22-year-old former Miss South Carolina and had four children with her (he died
at age 100 in 2003). Actor Tony Randall fathered a daughter in 1997 at age 77 (he
died at age 89 in 2005). Should fertility clinics place restrictions on women that
they don’t place on men?
One answer focuses on the best interests of the children. Regardless of whether
it’s a man or a woman, is it in a child’s best interest to be a newborn of a parent
approaching 70? How likely is it that the elderly parent will be around for the child’s
grade school graduation, let alone the senior prom? Certainly being orphaned at
age 2 is not ideal for the Bousada twins, and Adriana Iliescu will be unlikely to see
her daughter’s 18th birthday. Moreover, raising children takes energy and vigor,
qualities that diminish rapidly in the senior years.
Given these facts, are 70-year-old seniors vain in having children? Or selfish,
in wanting something to cherish and carry on one’s name? Should we make it illegal
for them to have children?
Gender Selection
Because X chromosomes weigh more than Y chromosomes, Microsort, a modified
flow cytometer, can separate heavier from lighter sperm, producing accurate results
90 percent of the time.32 Although intended for pre-implantation genetic diagnosis,
Microsort may be used to select male babies.
Gender selection is an issue in China, the Republic of Korea, and India. For
centuries there, parents saw females as less desirable than males. Using sonograms,
many families aborted female fetuses to try again for a male child.
Despite laws that ban testing for sex in India and China, at least 60 million
females are missing. After decades of such practices in China, in 2016, 20- to
44-year-old never-married men outnumber available females two-to-one, allowing
single Chinese women to be very choosy about whom they decide to marry. By
2020, 1 million excess Chinese males will seek to marry.33
Sex selection is sexist and leads to imbalances of the sexes in the population,
as happened in China. Perhaps it should be banned.
Unnatural
In 1978, the year of Louise Brown’s birth, the Vatican condemned IVF and has not
changed its position since. Its Instructions of 1987 equated IVF with “domination”
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and “manipulation of nature.”34 In 2008, in “Dignity of the Person,” it emphasized
that children should be created only through sexual intercourse of a married cou-
ple.35 The document bans IVF, freezing embryos, and screening them genetically.
Paul Ramsey, a socially conservative Protestant theologian at Princeton Univer-
sity, in 1970 equated IVF with genetic manipulation, predicting societal horrors to
such a practice. He implied that if physicians could find a tiny egg and fertilize it,
why couldn’t they alter its genes?36 He predicted that if they could, they would, and
he held that if they did, it would be sinful. Forty-six years later, his predictions may
come true with CRISPR (see Chapter 15).
Ramsey came up with some provocative phrases suggesting vague but disturbing
harms to society: “test tube babies,” “dial-a-baby,” “playing God.” He created brilliant
neologisms for rhetorical effect: “mercenary gestation,” “supermarket of embryos,”
“spare-parts man” (a hypothetical cloned twin grown for this purpose), “celebrity
seed” (sperm banks), and “human species suicide” (eliminating genetic diseases).
When Lesley Brown was several months pregnant, at the invitation of Sargent
Shriver, Robert Edwards attended a symposium on the ethics of IVF at Washington’s
Kennedy Institute for Bioethics. While senators, national columnists, and other sci-
entists listened, Ramsey condemned IVF. Edwards, the scientist, listened and
described what he heard:
He had to be seen and heard to be believed. I had to endure a denunciation of our
work as if from some nineteenth-century pulpit. It was delivered with a Gale 8 force,
and written in a similar vein a year later in the Journal of the American Medical
Association. He doubted that our patients had given their fully understanding con-
sent. We ignored the sanctity of life. We carried out immoral experiments on the
unborn. Our work was, he thundered, “unethical medical experimentation on pos-
sible future human beings and therefore it is subject to absolute moral prohibition.”
I was as much surprised as made wrathful by this impertinent scorching attack. He
abused everything I stood for.37
Ramsey condemned IVF not based on its possible harmful consequences to the
child, to the parents, or to society, but rather, and in a view that resurfaced 20 years
later, from the idea of wronging the embryo-person. IVF is wrong in itself, Ramsey
held, because it is “unconsented-to experimentation” on a person, the embryo.38
During the 1970s, then Episcopal priest Joseph Fletcher defended IVF against
the claim that it was unnatural:
It is depressing, not comforting, to realize that most people are accidents. Their
conception was at best unintended, at worst unwanted. There are those who are so
bemused and befuddled by a fatalist mystique about nature with a capital N (or
“God’s will”) that they want us to accept passively whatever comes along. Talk of
“not tinkering” and “not playing God” and snide remarks about “artificial” and
“technological” policies is a vote against both humanness and humaneness.39
For Fletcher, each kind of case should be considered on its own merits to see
if it would help or hurt humanity; society must not be locked into antiquated reli-
gious prohibitions that take no account of consequences. Religion is best when it
is “pro people,” not when it worships abstract “thou shall not’s”:
The real choice is between accidental or random reproduction and rationally willed
or chosen reproduction . . . . Laboratory reproduction is radically human compared
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to conception by ordinary heterosexual intercourse. It is willed, chosen, purposed
and controlled, and surely those are among the traits that distinguish Homo sapiens
from others in the animal genus, from the primates down.40
In part because he disagreed so much with the views of conservative Christianity,
Fletcher gave up the priesthood around 1980 and became a secular thinker, becom-
ing one of the first secular bioethicists.
Physical Harm to Babies Created in New Ways
Many people predicted that the first baby born from IVF might be defective. This
is understandable because in the 1940s, an Italian researcher named Petrucci falsely
claimed to have fertilized a human egg in vitro, grown it for 29 days, and then
destroyed it because it was “monstrous.”41
At Louise Brown’s birth, one obstetrician emphasized that “the potential is
there for serious anomalies should an unqualified scientist mishandle an embryo.”42
Another obstetrician said, “What if we got a cyclops? Who is responsible? The par-
ents? Is the government obligated to take care of it?”43
Leon Kass, later chair in 2002 of George W. Bush’s Bioethics Commission,
warned, “It doesn’t matter how many times the baby is tested while in the mother’s
womb,” he averred, “they will never be certain the baby won’t be born without
defect.”44
Some Nobel Prize winners condemned experimental methods of conception.
James Watson feared that deformed babies would be born and need to be raised in
custodial homes or killed.45 (Watson later recanted.) Max Perutz, who won a Nobel
in chemistry, agreed:
I agree entirely with Dr. Watson that this is far too great a risk. Even if only a single
abnormal baby is born and has to be kept alive as an invalid for the rest of its life,
Dr. Edwards would have a terrible guilt upon his shoulders. The idea that this might
happen on a larger scale—new thalidomide catastrophe—is horrifying.46
In 1977, in Who Shall Play God? alarmist Jeremy Rifkin began four decades of
opposition to new reproductive techniques. Rifkin decried AR as evil “genetic engi-
neering,” which he defined as “artificial manipulation of life.”
Socially conservative, pioneering bioethicist Dan Callahan argued that the first
case of IVF was “probably unethical” because no one could guarantee that Louise
Brown would be normal, though scientists could ethically proceed after Louise’s
healthy birth.47
What these critics overlooked was that no reasonable approach to life can avoid
all risks. A highly unlikely result, even if that result is bad, still represents a small
risk.
Over the last 40 years, we learned a few things about actual physical harm to
IVF babies. Babies conceived through IVF have approximately twice the normal rate
of birth defects, around 4 percent overall—instead of the norm of 2 percent.48 IVF
children are at greater risk for Beckwith-Wiedemann syndrome, which causes
enlarged organs and cancer in children, and five to seven times more likely to
develop retinoblastoma, a rare cancer of the eye.49 Another study found that 9 per-
cent of babies conceived through IVF or ICSI had birth defects versus 4.2 percent
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122 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
of those naturally conceived. Another American study found that babies conceived
through IVF were three times more likely than normal babies to be born under-
weight and premature.
One possible cause of these defects may be subtle change in expression of genes
caused by IVF that in turn may cause serious genetic damage.50 Researchers have
suggested an IVF registry to track such problems.51
A 2012 Australian study suggested that AR itself might pose no extra risk and
that the increase in defects associated with it were really caused by infertile women
previously taking Clomid, having previously conceived embryos with defects, or
other factors associated with infertility.52
The concept of absolute versus relative risk matters here. Given that the absolute
risk of an abnormal child overall is small, a slightly increased relative risk from IVF
conception doesn’t matter that much, so couples having IVF babies still have small
risks of serious problems.
Psychological Harm to Babies Created in New Ways
Jeremy Rifkin first raised the issue not of physical harm but of psychological harm by
having a new kind of origin, a claim later raised about children created by cloning:
What are the psychological implications of growing up as a specimen, sheltered not
by a warm womb but by steel and glass, belonging to no one but the lab technician
who joined together sperm and egg? In a world already populated with people with
identity crises, what’s the personal identity of a test-tube baby?53
Psychological trauma could also come from badly motivated or immature parents,
an issue discussed later in connection with the children of Nadya Suleman and the
Gosselins.
Paradoxes about Harm and Reproduction
Can children be harmed by in vitro conception? Theologian Hans Tiefel wrote, “No
one has the moral right to endanger a child while there is yet the option of whether
the child shall come into existence.”54 But can a “being” be harmed when it may
not exist?
Call this the paradox of harm, the seemingly self-contradictory idea that someone
can be harmed by being born. This idea appears to be paradoxical because, first, it
seems queer to say that we can harm a being by bringing it into existence; but
second, it seems equally odd to say that a mother, who could have prevented harm
to her child but did not, did no wrong.
A paradox results when two different meanings of a key term are used simulta-
neously. Paradoxical statements are dissolved by carefully specifying the different
meanings of each term and deciding which meaning applies to each. With the
paradox of harm, we must distinguish between different meanings of “harm.” Like
“good,” “harm” covers a broad range of meanings. In law school, one of the major
courses, torts covers its meanings.
Let’s distinguish two ways of thinking about harm. In the first, both a baseline
and a temporal component are necessary so that a change occurs that makes
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someone worse off. In this baseline harm, harm requires an adverse change in
someone’s condition. With the baseline concept, someone who doesn’t yet exist
cannot be harmed, because there is no baseline from which change can occur.
(Consider the old Yiddish joke: 1st—“Life is so terrible! Better to have never existed.”
2nd—”True, but who is so lucky? Not one in a thousand.”)
In the second way of defining harm, harm involves comparing a present defi-
cient condition with what normally would have been. In this abnormal harm, some-
one can be harmed by being brought into existence with some defect that could
have been avoided by taking reasonable precautions. With abnormal harm, the
event or omission that causes the defect is the cause of harm. The abnormality
concept underlies the belief that women should do everything possible to have
healthy, unimpaired babies, that anything less than the maximal effort is blame-
worthy, and that it is wrong for a woman to take risks with a future person’s intel-
ligence or health. To sum up these two concepts of harm:
Baseline Harm. Requires a starting point (baseline) from which an adverse change
is plotted; that is, it requires an existing being who is made worse off.
Abnormal Harm. Requires a norm of development that is not met, for example,
because of a doctor’s actions or omissions while a woman is carrying a fetus.
In wrongful life cases in the courts, it is claimed that the lives of some children
are so miserable that their very existence is a tort. In wrongful birth cases, the claim
is not that the child’s life is totally miserable, but simply that the child has been
damaged by being born less than normal. Wrongful birth suits appeal to the nor-
mality concept. The courts have rejected wrongful life suits by assuming the baseline
concept; that is, they have assumed that preventing a birth or killing a baby cannot
possibly be a benefit, even to prevent or end a life of total harm.
These two concepts of harm can be applied to IVF. According to baseline harm,
a person created by IVF cannot thereby be harmed because, otherwise, that person
wouldn’t have existed. According to abnormal harm, IVF could harm a baby if it
caused some defect or deficiency that a normal baby would not have had.
Wronging versus Harming
For utilitarians or consequentialists, what matters about new kinds of human cre-
ation is that babies are not harmed. On the other hand, virtue theorists or deon-
tologists such as Kantians focus on the motives of prospective parents. Whether it
is AID, IVF, surrogacy, or cloning, they ask, “What would a good mother do? What
kinds of risk would she take?”
This deontological approach emphasizes that even though a child might not be
harmed by being brought into existence, a mother can still be wrong in bringing
the child into existence. That’s because “wrong” here is divorced from consequences
to the child and instead married to the motives of the mother in conceiving a child.
To take a mundane example, if a mother conceives a child not because she wants
a child but to try to force a wealthy man to marry her, then—regardless of any later
possible harm to the child—the mother is wrong to create it for this reason.
In a Scottish study in 2005 of women trying to conceive at an infertility clinic,
most of the 81 women would, if given an either-or choice, rather have a child with
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124 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
cerebral palsy or partially blind than no child at all.55 But is this the right motive
for childbearing? This issue intensifies with dilemmas raised by implanting multiple
embryos, where couples face choices between risks of no child and risks of several
children with disabilities.
Let us distinguish between the ideal and the permissible regarding traditional
conception and AR.
Best Interests. What methods of conception are best for children brought into the
world? What methods are permissible?
Best Motives. What motives are best for parents to have in creating children? What
motives are permissible?
Harm by Not Knowing One’s Biological Parents?
Can a child be harmed by not knowing his genetic ancestors? Yes, if he or she later
needs to find out specific genetic information or to discover who his or her biolog-
ical parents were. Even if a donor of sperm or egg wishes to be anonymous, children
are increasingly being given this information as adults.
One compromise solves this problem by allowing gametic donors or surrogates
to be confidential but not anonymous. In this practice, agencies keep from children
the names and identities of gamete donors, but donors can update their files every
few years so that their biological children can know about their genetic diseases
and lives. This practice protects the desire of some donors and some surrogates not
to have contact with children created from their gametes while also giving them the
chance to change their minds.
It is mainly the adoptive parents who don’t want their children to know such
donors.56 Surprisingly, many sperm and egg donors, or surrogates, do not mind main-
taining such records and want to know about the lives of such children.57 For exam-
ple, 49-year-old Google engineer Todd Whitehurst fathered 54 children as a sperm
donor in southern California in 1998 and in 2016, met 8 of them for the first time.
Pediatrician/internist Matthew Neidner registered online in 2006 with the Donor
Sibling Registry and discovered that his sperm over 10 years had helped create nine
children, who can see his picture online and follow his career.58 Single women in
San Diego selected his sperm from his profile at the Fertility Center of California.
Is Commercialization of Assisted Reproduction Wrong?
Sale of gametes either could be intrinsically wrong—just wrong in itself—or indirectly
wrong because of associated bad consequences. The first belief stems from religious
or Kantian premises about the inherent value of humans being incompatible with
aspects of their conception being priced in the market. Valuing human life is incom-
patible with paying someone a price for sperm, eggs, embryos, or gestation, making
the resulting baby a commodity.
Someone looking at the larger structure of society may claim, emphasizing a view
of justice, that reproductive relationships between people should not be subjected to
money. They could also argue that such transactions violate natural law. In other
words, reproduction should be natural and free, not something bought through a
contract. So payment for sperm, eggs, and surrogacy is wrong, as is physicians work-
ing in fertility clinics where money is exchanged for these goods and services.
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A large number of articles over the past decades sensationalized payment to
young women for their eggs, predicting dire consequences such as the commodifi-
cation of life, millions of women reduced to being egg sellers, and made-to-order
embryos.59
Defenders of payment ask whether enough young women will go through egg
donation for altruistic reasons. Altruism hasn’t worked in other areas of medicine.
Voluntary donation has failed to meet the need for blood for operations, organs for
transplantation, or bone marrow for leukemia patients.
So if we don’t permit compensation, infertile couples will not get the babies
they want. If we regulate compensation and ban a real market, other problems arise,
such as trying to set the right fee for everyone. Finally, if payment for AR is wrong,
why isn’t payment for adoption wrong?
Sometimes, objections about payment to women imply that men are exploit-
ing women. From reading interviews with paid surrogates, this does not seem to
be true.60 Paid surrogacy empowers many women who do it, making them special
and contributing to their family’s income. A surprisingly large number do it
despite objections from husbands or battle husbands who want to keep the ges-
tated baby.
Screening for Genetic Disease: A New Eugenics?
Prospective couples can screen for future traits of children in two ways: by scruti-
nizing the background of the egg or sperm donors or by testing actual embryos for
genetic conditions such as Down syndrome. Is such expanded choice good or a new
eugenics?
Some critics oppose any selection by prospective parents and argue that parents
should be forced to accept the first available embryo or that embryos should be
randomly assigned. Similar critics once argued that all adoptable babies should be
adopted before couples tried IVF.
Some prospective couples, for example, Japanese-American, want an embryo
from parents who will be Japanese-American. They desire to maintain the illusion
that the child came from their gametes.
Other couples want to avoid a child with disabilities, such as a Down child or
a child with fragile X syndrome (a condition leading to retardation). If couples are
allowed to do some screening for genetic diseases, will this lead to them wanting
only perfect babies or to a new eugenics?
Perhaps not. One reason is the cost of screening: For a single disease, it can be
as much as $20,000, which most insurance companies will not pay.61 It is unlikely
that a couple will screen out hundreds of embryos and implant only the perfect
ones, because few couples have the millions of dollars to pay for so many screening
tests. Should a cheap screening test be available where a couple could cheaply
screen an embryo for hundreds of genetic diseases, this objection might carry some
moral weight.
Even if such a test becomes available, we need to ask, what’s wrong with cou-
ples wanting as healthy a baby as possible at birth? Isn’t this what properly moti-
vated parents should desire? Isn’t this why pregnant mothers should avoid alcohol,
tobacco, or other harmful drugs during pregnancy?
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Designer Babies?
This is a large question, connected in part to questions about eugenics and controls
on biotechnology. Note that many people believe that it is permissible to use such
techniques to let infertile couples choose against diseases that embryos might carry.
Sensationalistic stories imply that pre-implantation diagnosis will lead to eugenics;
but is this leap realistic?
When clinics pay young women for their eggs, they fertilize the eggs with a
variety of different sperm, keeping records of each embryo created. Couples may
then select an embryo from this woman’s eggs (seeing a photo and description of
her) that will be fertilized by sperm from a man whose photo they view and whose
life they read about.
Critics worry that traits of men and women will be selected that the purchasing
couple deem desirable. As one such critic put it in discussing a market for egg
donors, “this approach is harmful not only because it serves to reinforce social
prejudice but also because it fragments women as persons by commodifying their
characteristics, which seems at least as harmful as commodifying their eggs.”62
But critics who decry selection of traits in embryos always ignore adoption. Why
is selection by ethnicity or race bad in one case but permissible in the other? Why
is selection by ethnicity and race plus large payment permissible for adoption but
not for eggs or embryos or surrogates?
In other areas of life, people decide what they value in others in joining frater-
nities, sororities, and country clubs, in hiring and firing, in dating, in choosing a
person to marry and to create children with, in making friends, in deciding where
to live, and in choosing whom to mentor. Many of these choices reinforce existing
attitudes and the government does not ban them.
On the other hand, perhaps things are subtler. The media and advertising shape
the way millions of young people dress and wear their clothes and could easily sway
them similarly about the kind of children they should want. Maybe we should be
worried.
Assisted Reproduction Worldwide
As one would expect, countries vary about their attitudes to AR. The highest per
capita users in the world are Israelis, where unlimited cycles of IVF are free for up
to “two take-home babies” until a woman is 45.63
Global capitalism, the Internet, and outsourcing have combined to create “repro-
ductive tourism.” PlaneHospital.com LLC operates from California and brings
together clients, gamete donors, and surrogates from around the globe.64 Because
many foreign countries such as China deny gay and lesbian couples the right to
adopt, such couples often use global services to obtain children. Using one of the
couple’s sperm or eggs can create a genetic tie to a child gestated by a woman in
America or India.
Egg donors usually come from North America or Eastern European countries,
because clients prefer fair-skinned babies. Greece, Cyprus, Panama, and Gujarat,
India, are centers for reproductive services, but for clients with money, their first
choice for surrogates are located in California.
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In the Gujarat state in West India, the Akanksha Infertility Clinic run by
Dr. Nayna Patel offers many willing surrogates for foreign couples at $5,000–$7,000,
instead of the $50,000 fee common in North America. The Oprah Winfrey Show
has profiled the Akanksha Infertility Clinic in Anand. The Akanksha Clinic has
been criticized for keeping its mothers in prison-like seclusion behind barbed-wire
gates and for the death of a young surrogate named Easwari, who delivered her
contracted-for baby but died afterward from uncontrolled bleeding.65 As the second
wife in a polygamous marriage, Easwari may have had little real choice about accept-
ing the $5,000 for surrogacy, more than what she could have made at best in
10 years of working outside her home. If a woman has twins, as surrogates often
do after Dr. Patel implants several embryos, she can make $6,000–$7,000, equivalent
to 12–14 years of work outside the home.
Time to Regulate Fertility Clinics?
Perhaps it’s time to ban implantation of sperm or embryos where more than two
births are possible and ban implantation of embryos in women over age 55 (and
with rigorous proof required of birth).
Given that the ART industry generates $1 billion in fees per year and given
what critics call “the wild west of medicine,” where almost anything goes, some
minimal regulation of AR might be good for it, especially for the children it
creates.66
We know that being a multiple is not good for the resulting children, who run
a high risk of having a lifelong disability. Nor is it good to be born to a single, nearly
70-year-old woman, who will likely die and leave the child an orphan. Even if the
woman is rich, the emotional health of the child will be severely compromised.
Governments could regulate fertility clinics in four ways: (1) No AR for women
over age 55 and real testing must be enforced (seriously, in America it’s easier for
the elderly to buy reproductive services than it is for teenagers to buy alcohol).
(2) Implantation of no more than one embryo and no introduction of sperm when
ovaries mature more than two eggs. This will reduce the number of multiple births,
and attendant disabled children, by 99 percent. (3) No selection of gender of
embryos except for sex-linked genetic disorders. (4) No selection of a child to match
the disability of existing parents with a disability, for example, deaf parents who
want a deaf child. It is not in the best interests of any child to be born deaf, and
parents who want such disabled children have the wrong motives.
On the other hand, some reasons exist not to regulate fertility clinics. During
the 1970s, America banned use of federal funds for experimentation on embryos.
This ban hoped to stop AR research, but fertility clinics subsidized their research
from fees paid by clients. At the time, critics doubted that couples would pay much
for AR, especially given such low chances of having a baby. But critics erred. Over
1 million American couples paid for assistance in ART clinics.
An unintended but foreseeable by-product of the ban was that neither the National
Institutes of Health (NIH) nor Institutional Review Boards (IRBs) could regulate AR
research in private clinics. That lack of regulation led to breakthroughs, fueled by
competition between ART clinics. It created a billion-dollar industry, where patients
fly to enlightened countries to get what they can’t get in repressive countries.
pen07945_ch05_109-131.indd 127 9/8/16 9:51 AM
128 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
So, if it’s not broke, don’t fix it. A few aberrant cases should not bring down
the whole system. Physician Michael Kamrava can be sued on behalf of the disabled
babies for breach of the standard of care, sending a message to other physicians in
fertility medicine.
Another problem is that reproductive medicine, with its research on human
embryos, fires passions in social conservatives, who believe such research attacks
the dignity of humans. Once politics controls who can buy AR services, will a slip-
pery slope occur? If we make it illegal for a physician to help a couple have a first-
born male child, or a 60-year-old woman to gestate a child, what’s next? Banning
AR altogether, the way the Vatican advocates?
Finally, given that AR has gone global, how can we regulate services in Greece
or India? Perhaps the only avenue for doing so involves citizenship and immigra-
tion, where children born to North American couples at nonsanctioned foreign
clinics would be denied citizenship or entry to North America.
Conclusion
Given that Nadya Suleman already had six children, Dr. Kamrava’s acceptance of her
as a fertility patient certainly was “a huge ethical failure.”67 And for him then to implant
all six of Suleman’s remaining embryos moved the case from ethical failure to ethical
tragedy—tragedy for the 14 kids to be parented by this immature, single woman.
AR is a special kind of medicine, not only wrapped in the joys of creating
wanted babies but also rife with controversies. As older women bear such babies,
as more embryos are implanted creating more multiple births, we need to think
more about harm to new children and less about the desires of infertile parents.
FURTHER READING
Scott Carney, The Red Market: On the Trail of the World’s Organ Brokers, Bone Thieves, Blood
Farmers, and Child Traffickers, New York: William Morrow, 2011.
Cynthia Cohen, ed., New Ways of Making Babies: The Case of Egg Donation, Bloomington, IN:
Indiana University Press, 1996.
Stephanie Coontz, The Way We Never Were, New York: Basic Books, 1992.
Joseph Fletcher, Ethics of Genetic Control: Enduring Reproductive Roulette, New York: Doubleday
Anchor; reprinted by Prometheus, Buffalo, NY, 1984.
Marcia Inhorn and Frank Balen, Infertility around the Globe: New Thinking on Childlessness,
Gender and Reproductive Technologies, Berkeley, CA: University of California Press, 2002.
Paul Ramsey, The Ethics of Fetal Experimentation, New Haven, CT: Yale University Press, 1975.
Elaine Tyler, Barren in the Promised Land: Childless Americans and the Pursuit of Happiness,
Cambridge, MA: Harvard University Press, 1995.
DISCUSSION QUESTIONS
1. If fertility clinics are regulated, shouldn’t adoption agencies also be regulated?
Shouldn’t there be age limits on who can adopt? Shouldn’t couples also be
banned from saying they want only a baby of a certain sex?
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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 129
2. Is it better to be born with a 65-year-old single mother than not to exist at all?
Is this a fair question? What’s wrong, if anything, with the way this question
is asked?
3. Why should there be any restrictions on choices of parents about babies with
AR? What’s different about AR that gives governments the right to impose such
restrictions? We don’t impose any tests on who can have a baby and we let
people who use tobacco and alcohol during pregnancy have babies. Given such
low standards, isn’t it contradictory to impose higher standards on AR?
4. Isn’t selling one’s eggs to the highest bidder like prostitution? Kant would object
to both because they treat one’s body as “a mere means.” Is it wrong to so
commodify one’s body and be paid for doing so?
5. IVF may not be unnatural but gestating eight fetuses is. There’s perversity going
on here and nature extracts a terrible price on the resulting kids. The same
thing when an elderly woman gestates a baby with artificial hormones. Aren’t
both processes thwarting nature, unnatural, and, hence, “just wrong”?
6. Is AR “pro-life”? Since 1 in 11 couples in America can’t conceive after a year
of trying, and if they want to have babies, what’s wrong with their using AR?
Even if some tiny embryos are lost in the process of trying to conceive—which
also occurs for 50 percent of embryos conceived through normal sexual rela-
tions—what’s wrong with couples wanting their own kids and using medical
science to try to have them? How can such desires not be “pro-life”?
NOTES
1. Patrick Steptoe and Robert Edwards, A Matter of Life, Morrow, London, 1980.
2. Time, August 7, 1978, p. 68.
3. Richard Blandau, quoted in Time, November 13, 1978, p. 89.
4. Walter Kornberg, “Playing God in Laboratory: Question of Man’s Wisdom,” Los Angeles Times,
March 16, 1969, p. G3.
5. Audrey Smith, quoted in Steptoe and Edwards, A Matter of Life, p. 48.
6. Centers for Disease Control, “Assisted Reproductive Technology (ART): ART Success Rates,” http://
www.cdc.gov/art/reports/.
7. Sheryl Gay Stolberg, “For the Infertile, a High-Tech Treadmill of Despair,” New York Times, Decem-
ber 14, 1997.
8. Centers for Disease Control, Assisted Reproductive Technology Success Rates in the United States: 1996
National Summary and Fertility Clinic Reports, http://www.cdc.gov/art/pdf/2013-report/art-2013-
fertility-clinic-report
9. For one such account, see Holly Finn, “My Fertility Crisis,” Wall Street Journal, July 23, 2011.
10. Seale Harris, A Women’s Surgeon: The Life Story of J. Marion Sims, Macmillan, New York, 1950,
p. 245; Barron Lerner, “Scholars Argue over Legacy of Surgeon Who Was Lionized, Then Vilified,”
New York Times, October 28, 2003, p. D7.
11. Elaine Tyler, Barren in the Promised Land: Childless Americans and the Pursuit of Happiness, Harvard
University Press, Cambridge, MA, 1995, pp. 65–69.
12. Sheryl Gay Stolberg, “Quandary on Donor Eggs: What to Tell the Children,” New York Times, Jan-
uary 18, 1998.
13. Gina Kolata, “New Pregnancy Hope: A Single Sperm Injected,” New York Times, August 11, 1993, p. B7.
14. Peggy Orenstein, “Your Gamete, Myself,” New York Times, July 15, 2007.
pen07945_ch05_109-131.indd 129 9/8/16 9:51 AM
http://www.cdc.gov/art/reports/
http://www.cdc.gov/art/reports/
http://www.cdc.gov/art/pdf/2013-report/art-2013-fertility-clinic-report
http://www.cdc.gov/art/pdf/2013-report/art-2013-fertility-clinic-report
130 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
15. K. Sauer, Richard Paulson, and Rogerio A. Lobo, “Reversing the natural decline in human fertility:
an extended clinical trial of oocyte donation to women of advanced reproductive age,” New England
Journal of Medicine 322 (1990), pp. 659–644.
16. B. Luke et al., “Cumulative Birth Rates with Linked Assisted Reproductive Technology Cycles,” New
England Journal of Medicine 366, no. 26 (June 28, 2002), p. 2483.
17. Gina Kolata, “Successful Births Reported with Frozen Human Eggs,” New York Times, October 17,
1997, p. A1.
18. David Colker, “It’s a Boy—Embryo Is Viable after 1990 Freezing,” Los Angeles Times, February 17,
1998.
19. Kirsty Horsey, “Twins Born 16 Years Apart,” Daily Mail (England), May 30, 2006, p. A1.
20. Richard Jerome, “In the Band,” People, July 1, 2002, pp. 48–50.
21. Sylvia Westphal, “New Way to Extend Fertility,” Wall Street Journal, April 20, 2007, p. A1.
22. Tamar Lewin, “Groups Opposed to Abortion Join Fights on Frozen Embryos,” New York Times,
January 20, 2016, p. A1.
23. Nancy Snyderman, “New IVF Technology Offers Dramatic Results,” NBC Nightly News, May 13,
2013.
24. Gina Kolata, “Soaring Price of Donor Eggs Sets Off Debate,” New York Times, February 25, 1998,
p. A1; Adrienne Knox, “Brokers and Fertility Clinics in Bidding War for Women Willing to Sell
Eggs from Ovaries,” Birmingham News, March 15, 1998, p. A3
25. Laura Mansnerud, “The Baby Bazaar: How Bundles of Joy Not for Sale Are Sold,” New York Times,
October 26, 1998.
26. Ibid.
27. U.S. State Department, quoted from New York Magazine, February 4, 2013, p. 7.
28. Elizabeth Cohen, “Surrogate Offered $10,000 to Abort Baby,” CNN Health, http://www.cnn
.com/2013/03/04/health/surrogacy-kelley-legal-battle.
29. Ann Curry, “After 10 Years, New Adventures for Septuplets,” Dateline, December 12, 2007, http://
www.nbcnews.com/id/22223331/#.USAS0hzB-AE.
30. Tamar Lewin, “Coming to U.S. for Baby, and Womb to Carry It,” New York Times, July 5, 2014.
31. “Grandmother,” People, June 28, 2006.
32. “Reproductive Health and Early Life Changes,” http://www.microsort.com/
33. “Single, Alone and Still Picky: Most Women Will Only Marry Men with a House,” eChinaCities,
January 15, 2015 (accessed January 22, 2016).
34. “Text of Vatican’s Statement on Human Reproduction,” New York Times, March 11, 1987, p. 10ff.
35. Laurie Goodstein and Elisabeth Povoledo, “Vatican Issues Instructions for Bioethics,” New York
Times, December 12, 2008.
36. Paul Ramsey, Fabricated Man, Yale University Press, New Haven, CT, 1970.
37. Steptoe and Edwards, A Matter of Life, p. 113.
38. Paul Ramsey, The Ethics of Fetal Experimentation, Yale University Press, New Haven, CT, 1975.
39. Joseph Fletcher, Ethics of Genetic Control: Enduring Reproductive Roulette, Doubleday Anchor, New
York; reprinted by Prometheus, Buffalo, NY, 1984, p. 36.
40. Joseph Fletcher, “Ethical Aspects of Genetic Controls,” New England Journal of Medicine 285, no. 14
(1971), pp. 776–781.
41. Time, November 13, 1978, p. 89.
42. John Marlow, quoted in U.S. News and World Report, August 7, 1978, p. 24
43. John Marshall, quoted in Time, July 31, 1978, p. 59.
44. Leon Kass, “The New Biology: What Price Relieving Man’s Estate?” Journal of the American Medical
Association 174 (November 19, 1971), pp. 779–788.
45. James Watson, “Moving towards the Clonal Man,” Atlantic, May 1971, p. 53.
46. Max Perutz, quoted in Steptoe and Edwards, A Matter of Life, p. 117.
47. Daniel Callahan, New York Times, July 27, 1978, p. A16.
pen07945_ch05_109-131.indd 130 9/8/16 9:51 AM
http://www.microsort.com/
http://www.cnn.com/2013/03/04/health/surrogacy-kelley-legal-battle
http://www.cnn.com/2013/03/04/health/surrogacy-kelley-legal-battle
http://www.nbcnews.com/id/22223331/#
http://www.nbcnews.com/id/22223331/#
Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 131
48. M. Hansen et al., “The Risk of Major Birth Defects after Intracytoplasmic Sperm Injection and In
Vitro Fertilization,” New England Journal of Medicine 346 (March 7, 2002), pp. 725–730.
49. Ibid.
50. Examination of leftover embryos created by IVF reveals a good deal of genetic abnormalities, such
as mosaicism and morphological problems (Yamada Shita, “ART and Birth Defects,” Congenital
Abnormalities 45 (2005), pp. 39–43). IVF may contribute to aberrant imprinting and DNA methyl-
ation or epigenetic changes in the embryo’s DNA. Scientists need to study whether different meth-
ods of stimulating superovulation or culturing embryos, as well as different times of transferring
embryos to the uterus, affect epigenetic alternations (M. Hansen, “ART and Risk of Birth Defects—A
Systematic Review,” Human Reproduction 20 (2005), pp. 328–338).
51. Amy Docker Marcus, “A Registry for Test-Tube Babies,” Wall Street Journal, September 16, 2003, p.
D1, D9.
52. M. Davies et al., “Reproductive Technologies and the Risk of Birth Defects,” New England Journal
of Medicine 366, no. 19 (May 10, 2012), pp. 1803–1813.
53. Jeremy Rifkin and Ted Howard, Who Shall Play God? Dell, New York, 1977, p. 115.
54. Hans Tiefel, “In Vitro Fertilization: A Conservative View,” Journal of the American Medical Association
247, no. 23 (June 18, 1982), pp. 3235–3242.
55. Jeff Minerd, “ESHRE: Birth Defect Risk Preferable to Childlessness in IVF Survey,” MedPage Today,
June 23, 2005.
56. Stolberg, “Quandary on Donor Eggs.”
57. Cynthia Cohen, “Parents Anonymous,” Cynthia Cohen (ed.), Egg Donation, Johns Hopkins Univer-
sity Press, Baltimore, MD, 1997.
58. Susan Schindelhette, “My Life as a Sperm Donor,” People, June 5, 2006, pp. 135–137.
59. For example, see Wesley J. Smith, “Eggs for Sale?” The Weekly Standard, May 20, 2013; David Tuller,
“Payment Offers to Egg Donors Prompt Scrutiny,” New York Times, May 11, 2010, p. D5.
60. Helen Ragone, Conception from the Heart, Indiana University Press, Bloomington, IN, 1994.
61. Frederic Golden, “Good Eggs, Bad Eggs,” Time, January 11, 1999, p. 58.
62. Mary Rutz, “Selling Eggs: Cost and Consent in the Bull Market,” Bulletin of the University of Illinois
at Chicago Department of Medical Education 5, no. 2 (January 1999), p. 3.
63. Dina Kraft, “Where Families Are Prized, Help Is Free,” New York Times, July 18, 2011, p. A5.
64. Tamara Audi and Arlene Chang, “Assembling the Global Baby,” Wall Street Journal, December 11–12,
2010, pp. C1–2.
65. Scott Carney, “Cash on Delivery,” The Red Market: On the Trail of the World’s Organ Brokers, Bone
Thieves, Blood Farmers and Child Traffickers, William Morrow, New York, 2011, p. 142.
66. Rick Weiss, “Bioethics Panel Calls for Ban on Radical Reproductive Procedures,” Washington Post,
January 16, 2004.
67. Time, August 7, 1978; Newsday, February 8, 2009, p. A46.
pen07945_ch05_109-131.indd 131 9/8/16 9:51 AM
Over the past three decades, ethical controversies about embryos intricately
mixed with controversies about cloning and stem cells. In July 2016, it has been
20 years since the lamb Dolly was cloned. This chapter discusses controversies about
embryos, stem cells, and all kinds of cloning.
BACKGROUND ON EMBRYONIC RESEARCH,
CLONING, AND STEM CELLS
In 1973, Roe v. Wade made abortion legal in all states. As soon as laws permitted
abortions, researchers legally experimented on 20 live-born fetuses, seemingly
degrading nascent human life.1
Five years later, and without cultural agreement or approval of an ethics com-
mittee, Patrick Steptoe and Robert Edwards reversed infertility by creating “test
tube” baby Louise Brown. In doing so, and using in vitro fertilization (IVF), they
created and destroyed about 100 human embryos. Then, as today, the creation of
babies by IVF had the foreseen but unintended by-product of sacrificing human
embryos that did not implant.
In 1979, obstetricians Howard and Georgeanna Jones established an IVF clinic
at Eastern Virginia Medical School. In 1981, they helped create the first American
baby born via IVF, Elizabeth Carr. While the embryo that became Elizabeth Carr
was being formed, opponents protested outside. Conservative Christians saw IVF
as alien and suspect, because scientists were creating humans in artificial ways,
outside of sexual intercourse and the womb, violating natural law.
So began the politics of the embryo, which have intensified over the past
40 years. In 1977, the Ethics Advisory Board concluded that some research with
embryos should be permitted, but Congress never accepted its conclusions.
The Rios Case When Mario and Elsa Rios, a wealthy American couple, died child-
less in 1981, their IVF-created embryos existed in frozen limbo. Because neither the
Rioses nor their infertility clinic in Australia had thought about the death of their
embryos, the question arose whether the embryos could be destroyed. If implanted
C H A P T E R 6
Embryos, Stem Cells,
and Reproductive Cloning
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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 133
in surrogates, the embryos could result in children who could inherit the Rios’
fortune.
An ad hoc committee in Australia required scientists to preserve the embryos
until they were adopted. They never were, and over the years, freezing made them
deteriorate (as all frozen embryos will eventually), making the issue moot.
The Davis Case In 1990, Mary Sue and Junior Davis of Tennessee divorced and
fought for custody of their seven embryos frozen in an IVF clinic. After her remarriage,
Mary Sue Davis wanted to donate their embryos to an infertile couple, but Junior dis-
agreed. In 1992, the Tennessee Supreme Court decided that Junior needn’t become a
father against his will. After that, a lower Tennessee court ruled that he could destroy
the embryos, which he did.2 In 1994, the Human Embryo Research Panel concluded
that federal funding of research with embryos would improve the success and safety of
procedures to reduce infertility and that prohibiting federal funding would harm the
quality of such research.
It called embryos created specifically for research embryos and those leftover
after successful IVF spare embryos. The panel rejected the compromise that research
could be done only on spare embryos. As expected, leftover embryos from couples
unsuccessfully attempting IVF had higher rates of genetic abnormalities, and
research needed to be done on exactly such embryos.
Politically savvy members of the panel thought Congress would accept their
modest recommendations, but, preoccupied with partial-birth abortions in 1995,
Congress rejected them.
In 1996, Congress added the Dickey-Warner Amendment to National Institutes
of Health’s (NIH) appropriations bill: “None of the funds made available in this
act may be used for . . . research in which a human embryo or embryos are
destroyed, discarded, or knowingly subjected to risk of injury or death greater than
allowed for research on fetuses in utero.” English and Australian governments
allowed public monies to fund research on embryos up to day 14 of life. As a result,
companies based in these countries soon licensed breakthroughs to American
researchers.
Geneticist Marl Hughes had once made Science magazine’s list of top break-
throughs for his technique of taking DNA from a single cell of a human embryo
and testing it for cystic fibrosis. Taking the cell did not damage healthy embryos,
but such testing did mean that embryos with cystic fibrosis would be destroyed.
Although the ban on federal funds had stayed in effect, scientists such as Hughes
could work on embryos that were privately funded, that is, from private charities such
as Planned Parenthood or the March of Dimes. In 1997, Hughes had private funds
to pursue embryonic screening and much larger federal funds to pursue other
research that did not involve human embryos. Yet Hughes lost all federal funding
because federal funds had paid for a small refrigerator mistakenly placed in his pri-
vate lab.
1997: Dolly Is Cloned On February 24, 1997, every newspaper in the world screamed
that a lamb named Dolly had been created by cloning (she was actually born on the
previous July 5, 1996, but patents on the techniques were finalized only in February).
Cloning, a technique previously thought impossible to use to create mammals,
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134 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
conjured scary scenarios from science fiction. Dolly’s birth galvanized interest in
cloned human embryos, especially embryos that might be created, implanted in a
woman, and gestated to a human baby.
Where they had felt ambushed by Roe v. Wade and the birth of Louise Brown,
as well as the unanticipated success of IVF clinics, social conservatives vowed this
time to resist. It is as if they said to scientists, “At cloning, we draw the line and
beyond, ‘You shall not pass!’”
Cloning Science ”Cloning” is ambiguous, even in science, and may refer to molec-
ular cloning, cellular cloning, embryo twinning, or somatic cell nuclear transfer
(SCNT). The latter takes the nucleus of an adult cell and implants it in an egg where
the nucleus has been removed.
A variant of this process called fusion (which was actually done to produce
Dolly) puts the donor cells next to an enucleated egg and fuses the two with a tiny
electric current. Because the pulse that produces fusion also activates egg develop-
ment, a blastocyst—an embryo of about 100 cells—starts to develop.
In cells, mitochondria are oragnelles that do many things, such as fueling the
cell, signaling, and carrying genes implicated in serious human diseases. In fusion,
mitochondria from both the donor and the egg recipient mix, whereas in strict
transfer of a nucleus, mitochondria are present only in the enucleated egg.3
At a 1997 conference on mammalian cloning, Ian Wilmut, Dolly’s originator,
stressed that his techniques were inefficient: He started with 277 sheep eggs and
got only one live lamb. Nevertheless, his statement has been widely misunderstood,
partly because he has emphasized how many eggs he started with and not how
many fetuses resulted in live births. The actual statistics were 277 eggs fused with
sperm in oviducts, 247 of 277 recovered from oviducts, 29 transferred at the stage
of morula or blastocyst to create 13 pregnancies in lambs, three of which came to
birth, and one of which was healthy and lived, Dolly.4
1998: Immortalized Human Stem Cell Lines Created Found in embryos, bone mar-
row, and the umbilical cord, stem cells help the injured body grow new cells. If the
body loses blood, it activates stem cells to make new blood. As primordial cells,
stem cells can develop into any kind of differentiated cellular tissue: bone, muscle,
nerve, and so on. In theory, they could be directed to form new bones, neural cells,
cardiac tissue, and cure diseases.
Physicians already knew that the human body had stem cells, but they had no
easy way to grow them. Then John Gearhart of Johns Hopkins University and James
Thomson of the University of Wisconsin in 1998 discovered how to continually
produce stem cells—to create an immortalized stem cell line—rather than tediously
derive them from minute amounts of tissue from embryos or fetuses.
In effect, Gearhart and Thompson discovered how to make human embryos
into tiny “stem cell factories.” Such objectification of human embryos bothered
critics, who felt that using human embryos for such purposes demeaned the dignity
of human life and led down the slippery slope.
1998: ACT Uses Cow Eggs to Grow Human Embryos In 1998, Advanced Cell
Technology (ACT) of Massachusetts announced that it had made differentiated
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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 135
human cells revert to a primordial state by fusing them with cow eggs. Although
the cow egg was just the medium for the nucleus of the human cell (the nucleus
of the cow egg had been removed), the procedure sounded alarms. Once again,
biotechnology seemed out of control. President Clinton and his National Bioethics
Advisory Commission (NBAC) condemned any attempts to create children out of
such hybrids (although no one wanted to try to create such beings or was suggest-
ing doing so).
2001: NBAC Backs Research on Embryonic Stem Cells Although it condemned
reproductive cloning in 1998, the NBAC concluded in 2001 that the government
should fund research on stem cells created from human embryos. Congress never
accepted this recommendation, in part because cloning embryos connected to the
larger, controversial issue of reproductive cloning.
Fraudulent Claims and Kooks Cloning soon took up more media time than any
issue in the 35-year history of bioethics. With physicist Dick Seed wanting to clone
himself, and with the bizarre cult called “the Raelians” and Panayiotis Zavos and
Severino Antinori falsely claiming to have cloned a human fetus, cloning created one
sensational story after another, scaring people about identical babies being produced
like immortalized stem cell lines.
2001: Adult Stem Cells Discovered In 2001, scientists discovered stem cells not
only in bone marrow but also throughout the human body. Researchers started
using adult stem cells in research rather than using stem cells derived from human
embryos.
In the next five years, researchers discovered that many organs and tissues con-
tain precursor cells that act like stem cells. These adult stem cells became specific
kinds of cells more quickly than embryonic stem cells, for which scientists do not
know how to do the same. One director of an institute for regenerative medicine
says, “Brain stem cells can make almost all cell types in the brain, and that may be
all we need if we want to treat Parkinson’s disease or ALS. Embryonic stem cells
might not be necessary in those cases.”5 Similar, specific adult stem cells can be
obtained from the intestine, skin, liver, and bone marrow. For heart disease (and
many other organs or tissues), the director of Harvard’s Stem Cell Institute says, “If
you could find a progenitor cell in the adult heart that has the ability to replicate,
it’s likely easier to start with that than begin with an embryonic stem cell, which
has too many options.”6
But most adult organs contain few stem cells, not nearly enough to use medi-
cally, and adult stem cells are even harder to grow than embryonic stem cells. More
fundamentally, “Unlocking the secrets of self-renewal will most likely involve study-
ing embryonic stem cells,” says Harvard’s director.
2001: President George W. Bush’s First Press Conference On August 11, 2001,
President George W. Bush, in the first press conference on bioethics by an Ameri-
can president, announced his policy on federally funded research on human
embryos. He rejected using such funds to create embryos for research but allowed
them for research on 60 stem cell lines created from spare embryos. Carried live
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136 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
on television in prime time, his press conference signaled that bioethics had arrived
in American politics.
A year after that press conference, the number of stem cell lines appeared to
be small, about 15. Scientists then questioned whether President Bush’s policy
would get them the biological material they needed. Years later, scientists regarded
the 15 stem cell lines as inadequate.7
Cloning and the Law Senator Sam Brownback, who became governor of Kansas
in 2010, in 2001 pushed a bill in Congress to make all forms of cloning a federal
crime. Congress attempted to separate embryonic from reproductive cloning several
times over the next five years, culminated in a veto by George W. Bush in 2006 to
allow federal funding of research on embryos. Taking over the presidency in 2008,
Barack Obama allowed such funding.
President Bush also tried to ban all forms of cloning worldwide, but his proposal
stalemated in the United Nations. Korea, Malaysia, and China aligned with Euro-
pean countries and resisted the measure. Malaysia invested $26 million in BioValley,
a cluster of 100 new biotech companies to work on stem cells.8 China also invested
in cloning technology, hoping to succeed where the West had stumbled.9
With Congress stalemated, action about cloning fell to the states. Californians in
2002 passed Proposition 71, giving $3 billion for stem cell research from human
embryos. State legislatures across the land then battled either to fund or to criminalize
embryonic cloning. Wisconsin, New Jersey, Connecticut, Illinois, Washington, Ohio,
and Maryland funded similar research, whereas Massachusetts, Missouri, Arkansas,
Indiana, Iowa, Michigan, and North and South Dakota voted to criminalize all
cloning.10
By 2006, 13 states criminalized attempts at reproductive cloning, including
Arkansas, California, Connecticut, Indiana, Iowa, Maryland, Massachusetts, Michigan,
New Jersey, North Dakota, Rhode Island, South Dakota, and Virginia.11
Animal Cloning In the years after Dolly’s birth, scientists cloned animals important
for food and research: two calves (1998), the lambs to create Factor IX (1998), three
generations of mice (1998), a Rhesus monkey (1999), five pigs (2002), a goat (2002), a
rat (2003), many champion dairy cows and bulls (1998–2004), a horse (2003), a mule
(2003), a deer (2003) named “Dewey”, and a cat named “Carbon Copy” or “CC” (2001).
Researchers have not been able to clone a primate, much less clone primates
reliably, and without harming proteins which guide chromosomes in cell division.
Unless these spindle proteins could be made to behave properly, any babies born
in this way would almost certainly be damaged.12
In 2005, the South Korean team of Hwang Woo-suk cloned an Afghan hound,
named “Snuppy.” Because of their complex reproductive system, dogs had previ-
ously eluded cloning scientists, but Hwang’s team succeeded, an achievement that
remains undisputed despite his fraudulent claims about cloning human embryos.
Later, they produced five cloned “sniffer dogs” possessed of extraordinary ability to
smell drugs at airports.
2004: Hwang Woo-suk’s Fraud about Cloning Embryos In 2004, seemingly out of
nowhere, Hwang Woo-suk announced that he had not only successfully cloned
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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 137
viable human embryos but had also derived viable stem cells from these embryos.13
Before this claim, biologists thought that creating a human stem cell in embryos by
cloning could not be done. His account emphasized the relaxed Buddhist attention
and skills of his team. Importantly, he said these stem cell lines genetically matched
cells of donors, opening doors to study cells of victims of diseases such as Alzheimer’s
or Lou Gehrig’s disease.
He announced his feat at a meeting in Seattle of the American Association of
Science. Richard Doerflinger of the U.S. Conference of Catholic Bishops called the
feat a “clear and present danger” to the dignity of human life. Actor Michael J. Fox
hailed it as a major breakthrough. Handsome and wearing a business suit, Dr.
Hwang seemed to symbolize progress in medicine, especially when condemning
President George W. Bush’s hostility to his research.
But questions soon arose about his published photos of embryos, which did not
seem to be of different embryos but of the same ones.
In 2005, Hwang’s assistants testified that Hwang had forced them to fabricate
results and to alter pictures of embryos. An investigation concluded that Hwang
had not in fact produced any stem cell lines from human embryos, had not discov-
ered easy techniques for doing so, and had not produced matching stem cell lines
to cells of donors. Hwang was found guilty in South Korea for misusing millions of
dollars of funds specially given to him for his work and for violating Korean laws
in bioethics. He was sentenced to a two-year suspended prison sentence and was
barred from receiving further funds.
Why was it hard to expose Hwang’s fraud? Simple: federally-funded American
researchers then could not do any research on human embryos, so the Korean’s research
could not be easily falsified in America, the leading center for biotechnology.
Like the Raelians, Hwang was a fake. The media covered both fakes too much,
damaging legitimate medical progress.
2006: The Senate Vote and Presidential Veto On July 18, 2006, the U.S. Senate
voted to expand federal funding of embryonic stem cell research, passing a bill that
had passed the House the year before. The next day President Bush, as he had
promised to do, vetoed the bill, the first of his administration. Bush said the bill
would be “crossing a moral line and would support the taking of innocent human
life.” He was surrounded by dozens of “Snowflake” children, who were born from
an embryo-adoption program, and their parents. “These boys and girls are not spare
parts,” the president announced.14
Representative Nancy Pelosi of California, the House minority leader, retorted
that Bush’s veto was “saying ‘no’ to hope.” And Senator Orrin Hatch agreed, saying
the veto “sets back embryonic stem cell research another year or so.” During the
eight years of George W. Bush’s presidency, little research from federal funding
occurred on stem cells from human embryos.
2009: Obama Administration Reverses Bush Policies On July 7, 2009, federal reg-
ulators in the Obama administration set new rules for research with embryonic stem
cells.15 The president created a panel of scientists and ethicists to ensure that cou-
ples truly consented to using their embryos to create stem cells. Scientists and the
American Medical Association liked the results.
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2007–2009: IPS Cells Discovered In 2007, researcher Shinya Yamanaka of Kyoto
University discovered how to use four genes to tell skin cells to revert back to plu-
ripotent cells, or induced pluripotent stem (IPS) cells. It took a while for the world to
understand this achievement that garnered Yamanaka a Noble Prize in Physiology
and Medicine in 2012 (shared with John Gurdon).
In essence, Yamanaka taught four transcription factors to tell a differentiated,
somatic cell how to revert back to a primordial, undifferentiated stem cell. These
powerful cells eliminated the need for both embryonic stem cells derived from
actual embryos and of eggs from female donors to create embryos.
In July 2009, further progress occurred with induced stem cells.16 Two Chinese
teams created identical mice using embryonic stem cells created from IPS cells
derived from the skin of the ancestral mice. This achievement proved that IPS cells
are the equivalent of human embryonic cells in producing stem cells.
Controversies about Swapping Mitochondria In 2009, researchers swapped
mitochondria in embryos of monkey mothers, replacing bad DNA with good DNA.
Mitochondria carry some terrible, heritable genetic diseases, such as diseases caus-
ing muscular degeneration.
When the nucleus of a somatic cell is transferred from an existing person (an
“ancestor”), it must be transferred into something, and that “something” is a healthy
egg, from which the original nucleus has been removed. And it turns out that those
host eggs contain some DNA.
Host eggs with their original nucleus removed still contain something called
mitochondria, literally “grain-like threads” in ancient Greek. These threads are fre-
quently referred to as the powerhouse of the cell; they fuel cellular processes and,
when dysfunctional, can cripple the body.
Human mitochondria contain 37 genes, which contain some very bad heritable
diseases. So bad, in fact, that in England they have cleared the way for families
with devastating, inheritable mitochondrial diseases to use biotechnology to swap
the bad mitochondria in the mother’s egg with healthy mitochondria from a donor,
in hopes of eliminating disease that may have plagued a family for generations.
Mitochondria replacement represents a different kind of gene therapy than the
standard one, which fixes the lack of a particular, functional gene in a sick kid,
because the changed genes are heritable and can be passed on to future generations.
This is called germ line gene therapy (adding or replacing a single gene in a way
that is not heritable is called somatic therapy). Although some ethicists and scientists
think society should not have crossed this ethical bright line (they think somatic
gene therapy is dangerous enough, let alone therapy with an impact that continues
for generations), champions of germ line gene therapy retort that the whole point
of making the change is to get rid of the inheritable disease for all future children of
the descendants.
What the existence of those 37 potentially deadly mitochondrial genes means for
cloning is that whatever mitochondrial genes, or diseases, reside in the egg used will
be inherited by any resulting clones as well as any offspring they may produce.
In 2015, Britain’s Parliament legalized mitochondrial DNA transfers to combat
disease, although it has not yet been actually done in humans. The popular press
focused on the red herring of a child having genes from “three parents,” as if this
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was the main ethical concern of a teenager dying of irreversible muscular
degeneration.17
Dolly’s Death Following Dolly’s death at six and half years, critics claimed that
there was something about her unique origination that led to her early demise—that
because Dolly’s DNA came from a lamb that had already lived many years, Dolly
at birth had DNA whose telomeres were already short. Telomeres are the non-gene
segments of DNA at the tips of chromosomes, and as they shorten, our cells age
and we get age-related problems.
Ian Wilmut cites two reasons for Dolly’s death. First, she was overweight,
thanks to all the tourists, scientists, and reporters who fed her treats while visiting
her. Second, for her protection, she lived indoors. All the time spent standing on
her hind legs begging for treats, along with her extra weight, caused Dolly’s hip to
dislocate, which contributed to her death from a progressive, irreversible disease
caused by a respiratory infection that sheep living indoors commonly contract.
A postmortem analysis revealed that Dolly’s telomeres were in fact consistent
with a lamb much older than her six years.18 So some reduction in her telomeres
due to the advanced age of her donor’s udder cells may have contributed to her
death. If her immune system was weaker because her telomeres were shorter, she
may have had less ability to fight off lung infection than a younger lamb. If short-
ened telomeres helped kill Dolly early, whether directly or indirectly, this risk
extends to all cloned animals, especially those whose ancestor was of advanced age.
However, a study published in 2016 of four sheep aged 7 to 9, equivalent to 60 in
human years, showed no evidence of premature aging.19
Setbacks to, and Hucksterism in, Stem Cell Research Many “gee whiz” predictions
about stem cells did not come true. First, IPS cells derived from, for example, skin cells
seem to retain memory traces of being skin, such that they cannot easily be turned
into functioning cardiac cells. Second, IPS cells have been employed in clinical trials
to help patients with heart disease, with damaged spinal cords, or needing bone mar-
row transplants, but results so far have not been hugely therapeutic. Hence, we may
need to create stem cells derived from cloned embryos created from a patient’s own
cells and then use those stem cells in new research to help the patient. Clinics offering
stem cell treatments opened in Mexico and in clinics across America in an area strangely
unregulated by the FDA. In May 2015, USA Today reported on the alleged recoveries
of two legendary heroes of sports: National Hockey League star Gordie Howe and
National Football League star John Brodie. After suffering massive strokes, both traveled
outside the country for injections of stem cells from aborted human fetuses—a proce-
dure illegal in the United States but permissible in some other places. Brodie went to
Russia, Kazakhstan, and Mexico; Howe to Mexico. After the injections, each man’s
family claimed remarkable recoveries, claims yet to be medically substantiated.20
Finally, and alas, charlatans have promised miraculous cures from unproven treat-
ments with stem cells. In Texas, and taking advantage of Libertarian hostility to gov-
ernmental regulation, Governor Rick Perry allowed an exemption for such treatments
from the normal requirement of FDA approval for Celltex, a controversial company
that both provided Perry himself with treatments (for back pain) and which contrib-
uted to his political campaigns. In 2013, the FDA sent Celltex a warning letter, causing
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140 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
it to cease treatment in America. It also got bioethicist Glenn McGee into trouble for
being paid by Celltex and for seeming to endorse Celltex and its expensive treat-
ments.21 In 2016, an astonishing 570 stem cell clinics operated across America, many
making unproven claims and misleading many desperate patients, creating growing
pressure on the FDA to regulate these clinics and their claims.22
ETHICAL ISSUES ABOUT REPRODUCTIVE CLONING
Controversies about human embryos remain. As long as IVF clinics implant more
than one embryo or couples fight over frozen embryos, people will debate the moral
status of the embryo. Some scientists also believe that stem cells derived from
embryos may work better than IPS cells for certain purposes.
Valuable from Conception
For Thomas Aquinas in the thirteenth century, ensoulment occurred at 40 and 90
days for male and female fetuses, respectively, and therefore nothing of value
resided in the womb before those points. In 1869, Pius IX announced that abortion
at any stage resulted in excommunication.23 Since then, Catholic teaching has
emphasized the value of human life from the moment of conception. So it was no
surprise that in 1982, Pope John Paul II said to a group of scientists:
I condemn, in the most explicit and formal way, experimental manipulations of the
human embryo, since the human being, from conception to death, cannot be
exploited for any purpose whatsoever.24
Potential for Personhood
Many scientists say that before 14 days, the human embryo has no human form
and cannot experience pain. Why then give it value? One reply is that, despite the
fact that some zygotes become pathological tissue and some zygotes become twins,
the embryo is, as Jesuit priest Richard McCormick says, “powerfully on its way” to
development as a person. Even though it may later twin or not implant, conservative
believers see it as already a member of the human family.
Why is that? As McCormick writes about the human embryo:
. . . it remains [as having] potential for personhood and as such deserves profound
respect. This is a fortiori weighty for the believer who sees the human person as a
member of God’s family and the temple of the spirit. Interference with such a
potential future cannot be a light undertaking.
The fact that 400,000 embryos are frozen and deteriorating over time and may
become non-viable has created a new kind of adoption. The Snowflake program
arranges adoptions of embryos and claims 420 to date have become babies.25 The
program charges $15,000 for home study, matching of embryo and adopting couple,
embryo transfer and shipping, and a legal contract with lawyers.
However, we now know that any cell of the body can become a person. The
nucleus of a differentiated cell can be put into an enucleated human egg, a spark
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applied, and a new embryo can be formed that is a near-copy of the genetic ancestor.
Whether we use SCNT, IPS cells, or fusion, the truth is that we can form human
embryos in a variety of ways—and they all contain full potential for personhood.
The revolutionary aspect of recent advances in biology is that they do not make
embryos, but any human cell, special. The dignity of the embryo begins to collapse
into the dignity of the cell.
Slippery Slopes
In addition to asserting the intrinsic value of the embryo, McCormick worries about
what happens when human embryos are regarded as mere commodities for research
(or as little factories to produce stem cells). (In the following passage, “preembryo”
refers to the embryo before implantation on the uterine wall.)
If we concluded that preembryos need not be treated as persons, would we little
by little extend this to embryos? Would we gradually trivialize the reasons justifying
preembryo manipulation? . . . Furthermore, there is uncertainty about the effect of
preembryo manipulation on personal and societal attitudes toward nascent human
life in general. Will there be further erosion of our respect? I say “further” because
of the widespread acceptance and practice of abortion.26
Here, we first have a conceptual slippery slope argument, asserting that if trivial
reasons justify experimenting on embryos before 14 days, then similarly trivial rea-
sons will justify experimenting on first-trimester fetuses and then on more devel-
oped fetuses. McCormick also has an empirical slippery slope argument here,
predicting that acceptance of the deaths of embryos will generalize to acceptance
of deaths of fetuses.
Reductio ad Absurdum
Many commentators think that treating the embryo as valuable because it is a
potential person can be refuted by a reductio ad absurdum: a line of reasoning that
shows that implications of an idea are absurd and thus cast doubt on the idea itself.
In this instance, if a woman starts procreating in her teens and continues through-
out her fertile years, she can produce a dozen or more children. If each potential
person is valuable, then she ought to conceive as many children as possible. Given
the consequences of overpopulation, this conclusion hardly makes sense.
If embryos are persons, the following involve killing persons: creating embryos
for in vitro fertilization and freezing them for later use, pre-implantation genetic
diagnosis, or medical research. Similarly, if embryos are persons, then intrauterine
devices (IUDs) and Plan B (the “day after pill”), both of which prevent implantation
of embryos, also kill persons.
If these implications are false, then the premise that generated these claims is
false, and that premise is that human embryos are persons.
Of course, it might be possible, thinking of Judith Jarvis Thomson, to accept
the premise that embryos are persons, but to deny a further premise that persons
can never be killed. Also, when no particular woman has a duty to gestate them,
a philosophical difficulty arises in claiming a right to life for frozen embryos.
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The Interest View
Philosopher Bonnie Steinbock argues that having moral status (i.e., being the kind
of being who must be considered from the moral point of view) is limited to beings
“who have interests.” For her, a necessary condition of having an interest is being
able to desire something. One of the most basic desires is to avoid pain. We don’t
think vegetables feel pain, so we don’t think they have desires. We do think cats
and dogs feel pain, so we think they have interests.
Courses in law school say a great deal about interests, conflicts among interests,
and how to resolve them. As such, the concept of interest covers a lot of intellectual
territory.
As for embryos, it is commonly accepted that before the emergence of the
primitive streak at 14 days, there is no possibility of any neural development such
that any being could “be there” to feel pain. The human embryo at this stage is
more like a blackberry than a tadpole. To say this a different way, embryos cannot
feel pain at 14 days. Nor is it likely that anything feels pain for a long time after
14 days. Although commonly pictured as a third-trimester fetus, an embryo does
not look like a human fetus and has no real nervous system until after the time
when most abortions are done (around 13 weeks).
As such for Steinbock, the embryo has no desires about what happens to it, so
it has no interests and no moral status. So it does not matter whether an embryo
fails to implant in the uterine wall, whether it is dislodged by an IUD, or whether
it is used in research. It only begins to matter when neurons form to create sentience,
the ability to feel pain.
Steinbock distinguishes between moral status and moral value. Beings can have
moral value, even if they lack moral status. For her, to say that something has moral
value is to say that there are good reasons for protecting it or being concerned about
it. So wilderness and works of art can have moral value, even if they lack interests
and lack moral status.27
For Steinbock, embryos have moral value but no moral status, and as such,
reasons exist for protecting their usage, for respecting them, and for not devaluing
them as mere tissue.
But how much do people really value embryos? Two-thirds of the human embryos
stored at two fertility clinics in England had to be destroyed because the owners did
not respond to a letter asking about their wishes.28 Given that these owners are the
most affected by their destruction, such couples do not seem to put much value on
these embryos—at least, in responding to a letter about consenting to keep them
alive in public clinics.
England has allowed its scientists to create human embryos for research and to use
them in such research for up to 14 days of development.29 In the years in which that
has been legal, no great changes in the fabric of English life seem to have occurred, nor
has there been a massive slide down a slippery slope of loss of human dignity.
Embryos and Respect
Bioethicist David Ozar once argued that although an embryo may not be a person,
neither is it just a pebble or a tissue.30 Embryos are not simply the property of an
owner. They deserve respect in view of their potential as persons.
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What does respecting an embryo mean? Well, for one thing, embryos should
not be eaten, encased in plastic as earrings, or bred into mixed-species hybrids.
Gene Outka claims that respecting embryos also means that human embryos should
not be substituted for the eyes of rabbits in testing cosmetics.31
Another way to put this point is to emphasize that a large amount of bodily
products, such as bone, cartilage, blood, and tissue, can be legally sold from cadavers.
Some firms specialize in such sales and broker them to research institutions and
medical schools. Respecting embryos would include banning them from being bought
and sold this way.
It is possible to be a good scientist and treat human embryos with respect in
medical research. One might make an analogy with animal experimentation. To test
new forms of heart surgery or new kinds of lenses for human eyes, we harm ani-
mals. But in using animals for our benefit this way, we should minimize their pain
and psychological terror and not make fun of them in any way.
In the same way, researchers who have the privilege of using human embryos
should be taught, required, and legally enjoined to treat them with the greatest
respect. That respect prevents a slippery slope to devaluing other human lives.
To make another analogy: physicians and medical students should treat the
newly dead with respect and not practice intubation or spinal taps or surgery on
them without the family’s permission, for to do so is to offer no respect to the life
just expired or to those who loved the patient. In the same way, one could argue
that human embryos should be treated carefully in view of the persons that—under
different circumstances—they could have become.
Indeterminacy. Father Richard McCormick does not assert that human embryos
are persons but thinks we should treat them as if they were. Why? Because we
don’t know exactly when personhood begins. To use his analogy, if the hunter is
unsure whether something moving in the bushes is a deer or a human, he shouldn’t
shoot.
Similarly, at the other end of life, if we are unsure whether a patient will emerge
from a coma, shouldn’t we wait as long as possible before removing a feeding tube?
A subtler objection emphasizes the indeterminancy of the boundaries of sen-
tience. When patients are under sedation for surgery, well-publicized stories have
taught us that they can hear. Some patients have been declared dead and then
awakened, recalling jokes made in their presence and procedures done on them (an
important argument for not allowing medical students to train on the newly dead).
Similarly, we are not sure exactly when the embryo develops sentience. Perhaps
the most rudimentary form is like phototropism when a plant bends toward light.
Even so, when any doubt exists, we should be cautious and, under a general prin-
ciple of respect, not subject embryos to any medical research, just as we would not
subject patients in vegetative states to such research.
The Opportunity Cost of Missed Research
In any decade, few really major breakthroughs occur in medical research. The creation
of immortalized stem cell lines from human embryos was one such breakthrough.
Not allowing this line of research to be federally funded was a major tragedy.
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It is not enough to let private companies or other countries fund the research.
America’s NIH is the crown jewel of the world’s scientific treasure, and it is a tragedy
that its researchers could not pursue this new area. Moreover, by allowing federally
funded studies, we ensure the highest level of peer-reviewed, objective research.
By banning use of embryos in federally funded projects, Congress deprived
millions of people of new medicines that otherwise might not be discovered for
another 100 years.
My Tissue
One of the well-known problems of transplants of foreign organs, blood, and tissue
into a patient’s body is rejection of the foreign material when recognized by the
immune system. Drugs that suppress the immune system to allow acceptance of
foreign tissue may cause cancer after decades of use. It would be much better to grow
bone, blood, organs, or particular masses of cells from one’s own body for future use.
Creating embryos from one’s own cells could be used to grow tissue for one’s
future medical needs. By using donor cells, embryos could be created by embryonic
cloning that are nearly identical copies of one’s genome.
Libertarians argue that what an individual does with his or her body should be
up to him or her. A federal ban on storing self-made medicine from one’s own
embryos allows government to take away this personal liberty.
Moot?
The creation of IPS cells means that we can get the valuable stem cells we need for
research without destroying human embryos. Whether you see this as a brilliant
scientific discovery or a gift from God, or both, the fact is that the impasse of
2000–2010 motivated scientists to seek a way around it, which they did.
Some researchers say we should keep all the tools on the table and that human
embryonic stem cells may be better for some purposes that IPS cells cannot fulfill.
Even so, with this new source of stem cells, some of the preceding arguments lose
their punch.
REPRODUCTIVE CLONING
Reproductive cloning alarms many people, perhaps because of the way it’s portrayed
in movies and science fiction. As such, we first need to address some misconcep-
tions about it.
Reproductive Cloning: Myths about Cloned Persons
1. Cloning does not reproduce an existing person. Reproductive cloning re-creates the
genes of the ancestor, not the ancestor himself. Cloning re-creates the genetic
base of a person, but a person’s identity partly stems from nongenetic sources,
such as his or her experiences growing up.
This means that you can’t reproduce yourself. Of course, any resulting child
would not have the memories of the adult ancestor. Narcissistic people who
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want to clone themselves will be disappointed. Cloning reproduces about 99.8
percent of the ancestor’s genes (the other 0.2 percent come from mitochondrial
genes in the host egg), but even 0.2 percent difference at conception can be
significant. Identical twins have small differences in random inactivation of the
X chromosome in embryonic development, and this results in their different
personalities and traits as adults.
2. Cloned humans would not be drones but persons. A child created by reproductive
cloning would, like any other fetus, need to be gestated by a woman for nine
months. The child would have no distinguishing marks on him or her to indi-
cate his or her origins. The child would feel, sense, think, and hurt like any
other human child.
Would a cloned child’s origins affect his or her status as a person? Critics once
thought that IVF kids might suffer discrimination, but that never happened. Most
likely, children created by cloning would be persons with all the rights of other
persons.
Leon Kass implied that prejudiced people might treat cloned children as less-
than-human. If this were so, it might not be in the best interest of them to be
originated this way.
But notice that the same logic implies that it might not be best to be created
as a child of an interracial couple because “other people” might be prejudiced
against such marriages and their children. The effect of such reasoning is to
strengthen prejudice, not to weaken it, and to give prejudice too much weight in
what, after all, is supposed to be moral reasoning. For this reason, we must be
careful when we speak of children originated by cloning. To call them “clones” may
be prejudicial if this term implies bad things about such children. Similarly, to imply
that children created by cloning would be raised in batches connotes all kinds of
bad, silly things, such as seeing them as zombies, as sources of organs for genetic
ancestors, and, in general, as less than human. In short, babies created by cloning
would not be zombies, but—legally and morally—persons.
Against the Will of God?
Many clergy believe that originating children by cloning is not God’s will. God
ordained in Genesis that humans should reproduce as did Adam and Eve, man and
woman begetting children, and that is God’s plan for humanity. To deviate from
the plan is wrong. Just as gay men and lesbians were not meant in this plan to have
children, so children were not meant to be created asexually.
Notice that this argument is an inference about God’s will. Nowhere in any
scripture does it say that medical science should not use reproductive cloning to
produce children. Notice too that most advances in the history of medicine have
overcome the argument that the change is against God’s will.
The Right to a Unique Genetic Identity
With Dolly’s birth, the possibility emerged of cloning a human baby. Various people
began to assert that what was wrong with cloning a human baby from a genetic
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ancestor’s cells was that it would violate the right of each person to a “unique
genetic identity.” Some theologians at the Vatican made this claim (although they
had never made it before Dolly’s birth).
An initial problem about this argument concerned twins. Since so-called iden-
tical twins share 99.9 percent of their genes, is their right to a unique identity
violated by being a twin? Certain techniques of assisted reproduction, such as
implanting many embryos, drastically increase the likelihood of such twins. Are
they wrong?
A bigger problem with this objection is the assumption that one’s genes are
one’s identity. This reductionist line of thinking in modern genetics lies behind
similar objections that a child created by cloning would not have a soul because it
shared the same genes as the ancestor. Both objections assume that genes make the
person, the self, the identity, and yet we know that is incorrect because environ-
ment also contributes to personhood (and possibly, so does free choice).
Unnatural and Perverse
Many people also wonder about the motives behind cloning. They ask, Why would
anyone want to create a child by cloning? Why not use the fun method of sex? If
a couple is unable to have a child through sex, why not adopt?
Sexual reproduction is natural. Cloning, or asexual reproduction, is unnatural.
What is good for plants or animals should not be used for humans.
Something is wrong with parents who want to clone a child. They are either
narcissistic or so desperate—after all other methods of having children have failed—
that they will subject their future child to a perverted experiment in which his or
her personhood will be at risk when he or she later learns that he or she is “just a
clone.”
In reply, it should be noted that this objection begs a lot of questions. First, it
assumes that what is primitive or natural is always best. That is certainly not true
for a man and woman who are naturally infertile. Second, it assumes that the new
way of making babies is perverse and therefore wrong, a charge that greeted many
other new ways of making babies in the past. Finally, it assumes bad motives on
the part of would-be parents.
The Right to an Open Future
Critics claim that parents will choose to create a child with a certain genotype, say,
that of an athlete, actor, or dad, with certain expectations. After their investment
in in vitro fertilization, they would expect the resulting child to have qualities similar
to the ancestor.
But the future should be entirely open to every child. It is wrong for tennis
mothers to impose their wills on their children in their hell-bent determination to
make them tennis stars, wrong for certain parents from an early age to push their
children into medical careers, and wrong for soccer dads and Little League coaches
to push their children into athleticism.
Why is this so? The heart of the objection about a closed future lies in explain-
ing this answer. At bottom is the premise that parents should not have children to
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fulfill their own needs, desires, or fantasies, but for the good of the child. In this
sense, parenting should be Kantian, not egotistic.
If parents create children expecting specific traits (basketball skills, acting tal-
ent), then children can be damaged psychologically when they cannot, or choose
not to, fulfill such expectations.
This argument lies behind the widely heard objection about “designer babies,”
that is, it is wrong for parents to try to create children with blue eyes and blonde
hair and with a strong interest in music and tennis. Instead, parents should accept
whatever God gives them as a gift.
The most dangerous idea of all is that parents should be free to reject, or not
love, babies who lack the qualities they want. Already a dangerous tendency has
started among some parents to not aggressively treat impaired babies suffering from
genetic diseases at birth, followed by equally dangerous practices of death-by-abor-
tion after a sonogram has determined that it’s a female fetus. If we add to this the
possibility of using pre-implantation diagnosis during in vitro fertilization not to
implant any embryo with cystic fibrosis or Down syndrome, we are already halfway
to the bad place of parents rejecting children in the nursery when they emerge with
the wrong genes.
Suppose a child is created from the genes of a girl who was an all-state cham-
pion in the breaststroke and who had ability in math, scoring in the top 1 percent
of standardized tests and excelling in AP math classes in high school. What is often
overlooked is the role of supportive parents in such achievements. Now suppose
that the cloned child never learns to swim and is never exposed to math—and
doesn’t develop these abilities while she is young enough. In that case, we will learn,
perhaps painfully, that parents of children cloned for certain abilities cannot just sit
back and wait for the abilities to unfold but will need to be just as involved as the
ancestor’s parents.
Nevertheless, this argument emphasizes how bad parenting damages children
and how society should not encourage bad parenting based on false expectations.
This would be especially true if parents emotionally abandoned kids who did not
meet their expectations.
On the other hand, this argument can go many places. Suppose the cloned
child resembles the ancestor much more than expected and, because the parents
already know what the child can excel at, encourage him or her in that direction.
Would that be bad for the parents or child?
PROBLEMS WITH PRIMATE CLONING
To be ethical, an experiment that intended to create humans by cloning would
require much evidence that scientists could safely and reliably clone monkeys, chim-
panzees, and apes. Only after achieving those results might it be permissible, in
very carefully controlled circumstances, to try to originate a human by cloning. But
so far, cloning primates, especially those most similar to us, has not been able to
produce one normal primate baby, much less produce them reliably.
Although many species of mammals have been successfully cloned, embryos of
chimpanzees created by SCNT often have the wrong number of chromosomes and
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148 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
therefore do not implant properly in the host uterus. In other words, after the
cloned primate embryos were created, their cells did not seem to divide properly.
The Spindle Problem
In cell division, or mitosis, the replication and division of chromosomes are guided
by things called spindles. In humans, two key proteins (NuMA and HSET) guide the
organization of other proteins necessary for the development of the embryo. In
primates, these spindle proteins concentrate near the chromosomes of unfertilized
egg cells—the same chromosomes that are removed to make way for the new adult
cell nucleus in SCNT. The process of removing the old nucleus and inserting a new
nucleus seems to damage these spindle proteins. In non-primate mammals, these
proteins appear throughout the egg cell, making it easier to replace the nucleus by
SCNT without damaging them.
To find out what was going wrong in cloned monkey embryos, researchers at
the University of Pittsburgh School of Medicine fluorescently labeled the parts
active during division of cells. As said, they reaffirmed that the mitotic (as in mitosis)
spindles that guide chromosomes in cell division did not function correctly in cloned
embryos. More important, they found that either the cloned monkey embryos
lacked the NuMA and HSET spindle proteins or the two proteins were not func-
tioning properly. Getting primate embryos (and therefore human embryos) to have
these two key proteins and to then have those proteins function correctly in orga-
nizing chromosomes around spindles may be the key to successful human
cloning.
In 2007, a team of researchers at Oregon Health and Science University did
successfully create a stem cell line from a cloned primate nucleus. They also used
SCNT, but did so more precisely. They didn’t use the DNA stains and X-ray light-
ing they had used previously, because they believed these techniques were what
had harmed the primate’s DNA. Instead, they used a machine called “Oosight,”
which allowed them to see the DNA-carrying structures in the egg. Importantly,
the researchers microsurgically gathered chromosomes at the right time during
embryo formation so that the spindle proteins needed for each chromosome were
present and functioning correctly. So they were able to successfully clone primate
fetuses.32
At least, they would have solved it, if they had been able to show that the babies
that resulted would not miscarry and, when born, would be healthy and normal.
We don’t know exactly why, but none of the primate fetuses completed gestation
to birth. The Oregon team transferred 77 embryos into different surrogates, but no
fetus made it to day 25.
One problem is that, to produce a viable fetus, the cycle of the cloned embryo
has to perfectly match the menstrual cycle of the surrogate mother, a very difficult
task to accomplish. Another problem lies within the embryonic cells themselves:
They do not have the right epigenetic programming—supra-genetic instructions that
affect gene function—to mature into an actual monkey. Cloned embryonic cells may
lack the signals that would turn key genes on or off at various stages in gestation.
So any resulting primate babies almost certainly are going to be born with major
defects.
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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 149
Why might this otherwise be an ethical issue? When fetuses don’t have the
proper genes turned on or off at the right times or don’t have the proper number
of chromosomes, they will be born with significant problems. For instance, Down
syndrome is due to a chromosomal abnormality; so is Turner syndrome in females
as well as Klinefelter syndrome.
Thus, any experiment that cloned human embryos from an ancestor and
implanted them in the wombs of real women would run a high risk of creating
babies with chromosomal defects as well as other defects caused by genes not turn-
ing on or off at the right times in gestation.
As previously noted, this is the major reason why originating babies by cloning
is unethical. There is a very high likelihood that any babies so produced would have
major structural abnormalities, problems caused by deep-down irregularities in their
genes and cells. As there are many other ways to create human babies, by sex or
assisted reproduction, and many other ways to get children, using surrogates or by
adoption, there is now no cogent ethical argument for allowing experiments to
create human children by cloning.
Notice that this objection depends on the existing state of scientific knowledge.
If scientists learn to originate baboons and chimpanzees by cloning without defects
and learn how to originate all other mammals safely by cloning, then the chances
of a defective cloned baby would drop drastically, and the force of this objection
would correspondingly diminish.
Notice that when we discuss abnormalities, we need a baseline for comparison.
Over 50 percent of embryos created sexually, half of which are chromosomally
abnormal, do not implant successfully in the human uterus and are lost. About 2
percent of live-born babies have some genetic defect. Millions of babies are born
after the mother smoked or drank during their gestation, yet we do not criminalize
such smoking and drinking during pregnancy. (Perhaps we should, but why should
we focus on the sensationalistic, remote cases of cloning and ignore obvious harm
to babies around us?)
Inequality
Some people, through no merit of their own, start out life much better than others.
Some children get two parents, four grandparents, lots of gifts at holidays and
birthdays, special preschool and after-school tutoring, and the best private schools
and universities. It seems unfair that some get so much, but others so little.
Over the past centuries, civilized societies have mitigated some of the more
extreme effects of this environmental inequality: Estate taxes have reduced how much
can be inherited from parents, income taxes redistribute money from high earners
to those on disability and public assistance, and expanding economies have created
new opportunities for hardworking and talented people to get ahead.
Even so, the gap between rich and poor is astonishing, having widened over
the past decade. Given that gap, reproductive cloning could start a new kind of
biological inequality, much deeper than our existing environmental inequality.
Because reproductive cloning would normally involve a conscious choice to clone
the genome of one person rather than another, it is likely that families would
choose genomes with good qualities. If cloning could be done successfully, such
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150 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
families could create strong, clever, talented, energetic dynasties that outstripped
normal humans. It would be a biological case of “the rich get richer, the poor get
poorer.”
This is something new in human evolution. Sexual reproduction randomly
exchanges genetic material and, because of regression to the mean, makes sure that
the great genetic norm of human nature never rises or falls too much. But in a
single swoop, particular families single-mindedly devoted to raising their genetic
stature could biologically outdistance normal humans over a few generations.
As such, reproductive cloning could endanger social justice. Moreover, because
this danger was “written into biology,” it would be much harder to undo. People
without superior genes would find it much harder to compete against such superior
people, even when competition was fair.
But is this the way we want the advanced countries of the world to evolve?
Toward a deeply stratified society with Superiors, whose genotypes were chosen by
committed families bent on superiority, and Normals, whose genotypes were ran-
domly assigned by the spin of the genetic roulette ball in sexual reproduction?
Good of the Child
Almost all ordinary discussions of cloning beg two important questions: They
assume bad motives on the part of parents or scientists involved in creating a child
by cloning and they assume the child would be harmed by knowing he or she was
created this way.
We can see just how much is begged when we counter these assumptions. First,
a child created through cloning would know that he or she was wanted by his or
her parents. After all, creation of such a child would require in vitro fertilization,
which at best is successful only 25 percent of the time. Thus, prospective parents
probably would have to try several times to create the baby this way and to pay for
their efforts.
In contrast, all that many people know about the wishes of their parents is
that their parents had sex and did not abort. They have no clear evidence that
their birth was planned. This fact especially applies to children created before
Griswold v. Connecticut in 1965, which made it legal for physicians to prescribe
contraceptives.
To give this argument some play, assume that cloning children becomes safe.
Besides knowing he or she was wanted, is there anything about origination by
cloning that would be in the best interests of the future child?
Well, for one thing, most likely no parents would knowingly re-create the gen-
otype of an adult with a congenital disease. Insofar as possible, parents would
choose children who would be healthy.
This in itself will be good for the child. Placing aside for the moment worries
about eugenics, it is hard to ignore the good of a life where one is not constantly
challenged by physical or mental disabilities.
Next, consider that certain traits might be genetically based. We already know
that looks and physique are, because we see resemblances in a family. Suppose,
too, that intelligence, wit, temperament, sociability, verbal ability, mathematical abil-
ity, and analytical ability are partly genetically based. To give the argument more
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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 151
rope, suppose that parents could choose children with some of these traits. Would
doing so be good for the child?
It is hard to see why not. Although it may not be politically correct to say it,
all other things being equal, it is better to live life as a beautiful, smart, healthy
person than the reverse, and it is hard to see why such a life is not in the interests
of the person created.
Finally, we should notice that there is a dilemma that proponents of reproduc-
tive cloning encounter in which either way, they lose. If cloning is unsafe, then it
hurts the child and therefore it’s wrong. If cloning is safe, then it improves the child
and is eugenic and therefore wrong to do. Obviously, trapped in this false dilemma,
proponents of cloning can never win.
At bottom, like universal medical coverage, what may scare opponents of repro-
ductive cloning the most is the possibility that it will work, be safe, and be in the
best interests of the children created. Then some children will have more, biologi-
cally, than others, and some families may create biological dynasties. Be that as it
may, these are not objections about the intrinsic evil of cloning, but indirect ones
of public policy, focusing on harm to equality.
Only Way to Have One’s Own Baby
One of the main reasons to produce a child is to have a child with one’s own genes.
Whether it’s to have one’s family line continue or to have “a bit of me going into
the future,” no one questions the soundness of this parental motive.
Now in some rare cases, asexual reproduction will be the only method by which
a parent can have a genetic connection to a resulting child. Men who are azoosper-
mic (producing no sperm) or women whose eggs are too old to conceive often still
want a child who is genetically related. Reproductive cloning would allow each
parent to have a child (assuming two children) with a strong (99.9 percent) genetic
connection to the respective parent.
Although men with low sperm counts could reproduce sexually through intra-
cyptoplasmic sperm injection (ICSI) into a donated egg, there is no option for a
man who lacks sperm and a woman who lacks good eggs and who also want a
genetic connection to a child. For either parent, the only route is the asexual one
of using a cell from a nucleus of a differential cell and using the genes inside it via
cloning to create a human embryo.
The combination of two forces strengthens this argument in subtle ways. First,
as they pursue careers, many women delay their first pregnancy, and when they
marry so late that they cannot conceive, they are disappointed. At age 42, less than
10 percent of women carry healthy eggs; over 90 percent at this age will fail to bear
a child with their own egg. Whatever child they adopt or create with donor eggs
will have no genetic connection to them.
Second, it is easy to underestimate the urge to be genetically connected to a
child. When government and private insurance refused to pay for in vitro fertiliza-
tion in the late 1970s, everyone thought that few parents would pay cash for the
experimental procedures, much less that struggling college professors with little
money would forsake cars and a house in attempts to have a genetically related
baby. But they did, and a $4 billion industry was born.
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152 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
Hence, the millions of couples with women in their 40s who are trying to con-
ceive a child, and who strongly desire a genetic connection to a child or two chil-
dren, will be the prime movers in the quest to originate children by cloning. Hence,
this argument will appeal to more people, and for different reasons, than might
have been thought at first.
Stronger Genetic Connection
A child created by cloning would have all the parent’s genes, not just half, right?
So he or she would have not the usual 50 percent genetic connection to a parent
but nearly 100 percent. But if half a genetic connection is good, why is double not
also good?
See this as an onus of proof argument. Since people and courts assume in
public policy that a biological connection makes for a bond between parent and
child, why wouldn’t a stronger bond be just as good? Whatever it is that makes
genetic bonds good for children, is a stronger bond not also good? If not, why? If
it’s just the novelty of a stronger bond, that is not an argument against the bond,
just a new item for empirical investigation.
Do our law and courts see the genetic connection this way? Indeed they do. In
a dozen cases around the country, a baby who was adopted and who spent several
years with an adopted family was returned to a parent with whom he shared a
genetic connection. The point is not to judge the merits of the final resolution of
custody of the child, but to emphasize how much weight the law puts on binding
a parent to a child through shared genes.
In another context, countless talk shows feature unmarried women who have
had sexual relations with more than one man, each of whom could be the father
of the child. On these shows and often in life, the men say, “If it’s mine, I’ll support
the child.” And the law agrees, assigning paternity and requirements of child-
support if a DNA test identifies a particular man as the father. All of these cases
point to the power we assume of the genetic connection to the child.
But those are sexual connections, where only half a parent’s genes are
bequeathed to a child. Imagine a total 100 percent genetic connection. Would that
not bind males to sons in an incredibly strong way? Couldn’t that be a good thing
for some sons to have a father so tightly bound to him? Or for a girl to have a
mother so tightly bound?
Liberty
Those wishing to curtail reproductive cloning because it might increase social
inequality need to speak honestly and not hide behind subterfuge. They rarely say
exactly what they want to do, which is to decrease the liberty of the average person
to have children and to create a family.
The liberty to create children and a family is not absolute and may be out-
weighed by a much greater social good. But in the rest of our lives, we prize liberty
highly, especially when it comes to creating families.
In most areas of our personal lives, we are not willing to curtail our personal
liberty to create more social-political-economic equality. For example, we could
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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 153
make private schools illegal and require all children to attend public schools. This
would get the best parents involved in PTAs and community boards, which in turn
would raise the level of all public schools, thereby helping equality. In the South,
where private academies continue as the vestiges of racially segregated schools and
where elite preparatory schools create a class of highly privileged students, equality
is not furthered by giving the best students the most resources.
But few people favor mandatory public schools because it would take away free-
dom from parents about how and where their children are educated. It is for this
reason that some people hate busing—because it forces some children to be bused
across the city in the name of equality—and some people homeschool their children.
The point is not about busing and public education, but about how it is easy to
pick on reproductive cloning, sacrificing it to equality, because so few people want
to exercise this liberty. But the principle is the same: sacrifice liberty for equality.
What justifies sacrifice in one area of reproductive life may be extended to another.
For example, if only well-off people can afford IVF, shouldn’t it be banned too?
A Rawlsian Argument for Cloning and Choice
John Rawls argued famously that the principles of justice would be chosen in a
hypothetical social contract where parties choose under a veil of ignorance about
their position in society when the veil rises.
Under this veil, it is in the interest of all future children to possess as much
natural talent as possible, with the best genes, and with the best chance at a long,
healthy life. One could even argue, although this is controversial, that under this
intra-generational, veil of ignorance theory of justice, people are not just permitted
to improve the genes of future children, but are obligated to do so. Why? Because it
is wrong to choose lives for future people that makes them much worse-off than
they otherwise could have lived.
Links between Embryonic and Reproductive Cloning
Leon Kass wrote, “And yet, as a matter of policy and prudence, any opponent of
the manufacture of cloned embryos must, I think, in the end oppose also the cre-
ation of cloned human embryos.”33
Because he fears that allowing cloning of human embryos will inevitably lead to
implantation of a human embryo originated by cloning, Kass wants “an absolute and
effective ban on all attempts to implant into a uterus a cloned human embryo to
produce a living child.”
To the criticism that the techniques of SCNT are not that complex and that
someone in the world will eventually originate a child by SCNT, Kass would put
the onus of proof on those who would permit the “horror” of such origination:
“Perhaps such a ban will prove ineffective; it will eventually be shown to have been
a mistake. But it would at least place the burden of practical proof where it belongs:
on the proponents of this horror.”
Not funding research on cloned embryos, or on ways to prevent abnormalities
in reproductive cloning in primates, seems perverse. If abnormalities are the major
reason for prohibiting reproductive cloning, then surely research to prevent them is
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154 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
justified. But if the real objection is the assumption of the intrinsic evil of reproduc-
tive cloning, then we should dispense with the cover argument about abnormalities
and get to the real issue.
If it is true that embryonic cloning cannot be divorced from reproductive clon-
ing, then other things also follow. If reproductive cloning is not bad, then neither
is embryonic cloning. If reproductive cloning is not intrinsically bad, but bad only
because of abnormal results, then we should study how to prevent abnormalities
by funding research in embryonic cloning.
In other words, the preceding argument says that because reproductive cloning
is evil, we shouldn’t fund anything that would help us do it. But if that is false and
reproductive cloning is just a tool—just another way to make a baby and start a
family—then we should investigate ways to create such a tool.
FURTHER READINGS
Human Cloning Foundation, www.humancloning.org.
Ronald M. Green, The Human Embryos Research Debates: Bioethics in the Vortex of Controversy,
New York: Oxford University Press, 2001.
S. Holland et al., The Human Embryonic Stem Cell Debate, Cambridge, MA: Bradford/MIT
Press, 2001.
Leon Kass, Human Cloning and Human Dignity: The Report of the President’s Council on Bioeth-
ics, New York: Public Affairs Press, 2002.
Alice Park, The Stem Cell Hope, New York: Penguin, 2011.
Gregory Pence, Who’s Afraid of Human Cloning? Lanham, MD: Rowman & Littlefield, 1998.
Gregory Pence, Cloning after Dolly: Who’s Still Afraid of Human Cloning? Lanham, MD: Row-
man & Littlefield, 2004.
DISCUSSION QUESTIONS
1. Should cloning embryos be linked to reproductive cloning, or should the two
issues be kept separate?
2. Is reproductive cloning now safe? How might it be made safer by studies of
cloned nonhuman animals? Is mitochrondrial replacement paving the way for
future cases of reproductive cloning?
3. Should food from cloned animals be sold? Labeled as such?
4. Is a human embryo a person? A thing of value? Just tissue?
5. How has the discovery of IPS cells altered the landscape of the debate about
research on human embryos?
6. If cloning babies were safe, how might it create more inequality in society?
NOTES
1. Maggie Scarf, “The Fetus as Guinea Pig,” New York Times Magazine; October 19, 1975, pp. 194–200;
Paul Ramsey, The Ethics of Fetal Research, Yale University Press, New Haven, CT, 1975.
2. Associated Press, “Ex-Husband Has Embryos Destroyed,” June 16, 1993.
pen07945_ch06_132-156.indd 154 9/8/16 9:51 AM
www.humancloning.org
Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 155
3. “The Science and Application of Cloning,” National Bioethics Advisory Commission, Cloning Human
Beings: Report and Recommendations of the National Bioethics Advisory Commission, Rockville, MD,
June 1997, p. 20.
4. I. Wilmut et al., “Viable Offspring Derived from Fetal and Adult Mammalian Cells,” Nature 385
(February 27, 1997), pp. 810–813.
5. Arnold Kriegstein, Director, University of California Institute of Regenerative Medicine, quoted in
Nancy Gibbs and Alice Park, “What a Bush Veto Would Mean for Stem Cells,” Time, July 24, 2006,
p. 36.
6. Douglas Melton, quoted in Gibbs and Park, “What a Bush Veto Would Mean for Stem Cells.”
7. Justin Gillis and Rick Weiss, “NIH: Few Stem Cell Colonies Likely Available for Research,” Wash-
ington Post, March 3, 2004, p. A3.
8. Chee Yoke Heong, “Malaysia New Dream: Biovalley,” Asia Times, December 24, 2003.
9. “China, a Cloning Paradise,” Asia Times, February 24, 2005.
10. “State Cloning Laws,” The National Conference of State Legislators, April 18, 2006, https://login.
n c s l . o r g / S S O / L o g i n . a s p x ? v i = 7 & v t = 12 c c 3 b 0 b 8 5 d c e 51 e 0 0 c f b b e d 13 8 9 2 a a 0 d e 2 b e 5 94 0 c a-
25ba4c1248406f79d9e3a11a5ef2787e7202ca3f1ae8cea85d2bc1613e886907881f fbbbc0573e –
4c5180a753782e364f2b55296525424a1b2b9609211254d35d8d0f426bbc37e8c0681e4.
11. “State Human Cloning Laws,” April 18, 2006, The National Conference of State Legislatures, http://
www.ncls.org/rorams/health/Genetics/rt-shel.htm.
12. Gretchen Vogel, “The Problem with Cloning Primates,” Science, April 10, 2003, http://www.science-
mag.org/news/2003/04/problem-cloning-primates (accessed March 10, 2016).
13. Rick Weiss, “Mature Human Embryos Cloned,” Washington Post, February 12, 2004, p. A28.
14. David Stout, “In First Veto, Bush Blocks Stem Cell Bill,” New York Times, July 19, 2006, p. A1.
15. Paul Basken, “NIH Pleases Scientists with New Rules for Stem Cell Research,” Chronicle of Higher
Education, July 7, 2009 (web edition).
16. Rob Stein, “Researches May Have Found the Equivalent of Embryonic Stem Cells,” Washington Post,
July 24, 2009, p. A5.
17. Gretchen Vogel and Erik Stokstad, “U.K. Parliament Approves Controversial Three-Parent Mito-
chondrial Gene Therapy,” Science, February 3, 2015; Brenda Foht, “And Baby Makes Four,” The
Weekly Standard, September 2, 2013; Sarah Knapton, “Three-Parent Babies by Next Year after Lords
Change the Law,” The Daily Telegraph, February 25, 2015, p. 2.
18. Paul G. Sheils et al., “Analysis of Telomere Length in Dolly, a Sheep Derived by Nuclear Trans-
fer,” Cloning 1, no. 2 (1999), pp. 119–125.
19. Joanna Klein, “Dolly the Sheep’s Fellow Clones, Enjoying their Golden Years,” New York Times,
July 26, 2016, p. D1.
20. Paul Knoepfler, “Rick Perry’s Sticky Stem Cell Problem for 2016,” The Niche, August 21, 2013,
https://www.ipscell.com/2013/08/rick-perrys-sticky-stem-cell-problem-for-2016/ (accessed February
6, 2016); Pete Shanks, “Rick Perry, Glenn McGee and Selling Texas Stem Cells,” Biopolitical Times,
January 16, 2012, http://www.biopoliticaltimes.org/article.php?id=6078 (accessed February 6,
2016); Brent Schrotenboer, “Fetal Stem Cells and the Sports Heroes They Revitalized,” USA
Today, May 19, 2015, http://www.usatoday.com/story/sports/2015/05/18/fetal-stem-cells-gordie-
howe-john-brodie-tijuana-stroke-stemedica/27501717/.
21. Editorial, “The Darker Side of Stem Cell Research, Nature 483, 5 (March 1, 2012).
22. Gina Kolata, “Stem Cell Therapies are Still Mostly Theory, Yet Clinics are Flourishing,” New York
Times, July 28, 2016.
23. Richard McCormick, “Who or What Is a Preembryo?” Kennedy Journal of Ethics 1, no.1 (March 1991),
p. 5.
24. Ibid.
25. https://www.nightlight.org/wp-content/uploads/SnowflakesAreFalling_Infographic_7-10-15
(accessed January 24, 2016).
26. McCormick, “Who or What Is a Preembryo?” p. 12.
pen07945_ch06_132-156.indd 155 9/8/16 9:51 AM
http://www.biopoliticaltimes.org/article.php?id=6078
http://www.ncls.org/rorams/health/Genetics/rt-shel.htm
http://www.ncls.org/rorams/health/Genetics/rt-shel.htm
http://www.science-mag.org/news/2003/04/problem-cloning-primates
http://www.science-mag.org/news/2003/04/problem-cloning-primates
http://www.usatoday.com/story/sports/2015/05/18/fetal-stem-cells-gordie-howe-john-brodie-tijuana-stroke-stemedica/27501717/
http://www.usatoday.com/story/sports/2015/05/18/fetal-stem-cells-gordie-howe-john-brodie-tijuana-stroke-stemedica/27501717/
https://www.nightlight.org/wp-content/uploads/SnowflakesAreFalling_Infographic_7-10-15
156 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning
27. Bonnie Steinbock, ed., “Moral Status, Moral Value and Human Embryos: Implications for Stem Cell
Research,” Oxford Handbook of Bioethics, Oxford University Press, New York, 2007.
28. Brian Leiberman, “Use of In-Vitro Fertilisation Embryos Cryopreserved for 5 Years or More,” Lancet
15, no. 4 (October 4, 2000), pp. 1156–1157.
29. “Committee Decides ‘Therapeutic Cloning’ Can Go Ahead,” BioNews 147 (May 3, 2002), p. 2.
30. David Ozar, “The Case for Not Unthawing Frozen Embryos,” Hastings Center Report 15, no. 4
(August 1985), pp. 7–12.
31. Gene Outka, “The Ethics of Human Stem Cell Research,” Kennedy Institute Journal of Ethics 12
(2002), pp. 175–213.
32. Vogel, “The Problem with Cloning Primates.”
33. Leon Kass, “Cloned Embryos,” First Things, June 2002.
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Every issue in bioethics has a pedigree, and the treatment of impaired babies has
a long one. That pedigree lies behind the cases of Infant Doe in Indiana in 1982 and
Baby Jane Doe in New York in 1983, as well as the Baby Doe rules and the Baby
Doe squads—this chapter’s subjects. Baby Doe cases arise when parents of impaired
neonates forgo treatment to let such babies die. Babies born in with microcephaly
from the Zika virus gave this issue new urgency in 2016.
Just as respirators and feeding tubes during the 1960s allowed adult comatose
patients to stay alive, so tiny respirators and tiny feeding tubes were then used to
save babies with congenital disabilities who otherwise would have died, especially
in new neonatal intensive care units (NICUs).
But heroic interventions at the start of life did not always create wonderful
results. Some such babies were saved only to suffer lives of chronic disability, making
neonatologists wonder whether they had done the right thing. On the other hand,
disability advocates then argued that such babies could have lives of good quality if
medicines aggressively treated them and society supplied adequate resources. So
began a debate that continues till today.
1971: THE JOHNS HOPKINS CASES
Down syndrome is a genetic condition that always causes mental disability and a
characteristic facial appearance; it is often accompanied by cardiac or intestinal
problems. In the early 1970s, physicians told parents that although the eventual IQ
of a Down person could not be predicted at birth, it usually ranged between 25 and
60, with some severely impaired individuals below 25 (whether this information
was correct will be discussed later).
In 1971, physicians sometimes omitted aggressive treatment from impaired
newborns. Three Down babies then in the NICU at Johns Hopkins Hospital in
Baltimore, Maryland, had life-threatening intestinal defects. Physicians and parents
allowed two of them to die.1
One of the babies had duodenal atresia, a blockage between the higher duode-
num and the lower stomach that prevents passage of food and water. The mother
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Impaired Babies and the
Americans with Disabilities Act
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158 Chapter 7 Impaired Babies and the Americans with Disabilities Act
of this baby—a nurse who had worked with children with Down syndrome—knew
that if she did not consent to surgery to open the atresia, her infant would die. She
refused to do so, as did her husband, a lawyer. Pediatric surgeons at Hopkins hon-
ored their decision and did not go to court to force them to operate.
Another mother, who already had children, allowed her Down baby to die.
According to theologian James Gustafson, she explained her decision to forgo treat-
ment by saying, “It would be unfair to the other children of the household to raise
them with a mongoloid.”2 (Because of the facial characteristics associated in Down
syndrome, it was previously called “mongolism,” a prejudicial term that should be
avoided.) Gustafson describes this mother’s decision as “anguished,” but notes that
when she learned her baby had Down syndrome, she “immediately indicated she
did not want the child.”
No one killed the two Down babies; they were simply allowed to die—physicians
thought this course more morally acceptable and less likely to incur legal prosecu-
tion. One of these babies took 15 days to die; ordinarily, the baby would have died
in about four days by dehydration, but some staff members surreptitiously gave the
infant water.
The parents of the third baby eventually accepted treatment, and this baby
lived. This baby’s parents had originally been given a pessimistic prognosis by the
referring obstetrician. However—and perhaps significantly—the staff at Hopkins
gave the third set of parents a more balanced view.
1970s: Pediatric Intensivists Go Public
In the early 1970s, two well-known pediatricians, R. Duff and A. Campbell at Yale-New
Haven Medical Center, admitted they had forgone treatment for 43 impaired infants,
who then died early.3 Their published admission caused a sensation and led to
soul-searching by neonatologists who wondered if they should follow this example.
English physician John Lorber then argued that some babies suffer such extreme
impairment that they are better off being allowed to die without treatment.4 Lorber
specialized in spina bifida. Spina bifida literally means “divided spine” and is a
hernial protrusion through a defect in the vertebral column. It is the most common
serious neural-tube defect, occurring three to five times in 10,000 live births.5 It
may occur in the form of a meningocele, a protrusion of part of the meninges, or it
may take the form of a myelomeningocele, a protrusion not only of part of the menin-
ges but also of the spinal cord (the nerve bundle).
A baby with spina bifida will almost always be paralyzed below the level of the
opening and suffer bowel and bladder problems. The opening makes the baby vul-
nerable to infections such as meningitis. Quality of life depends on the level of the
meningomyelocele and the degree of associated problems such as hydrocephalus—a
swelling of cranial tissue that commonly accompanies spina bifida.
Hydrocephalus often increases intracranial pressure and decreases blood flow
to the brain, resulting in mental deficiency. The probability of mental impairment
can be reduced by aggressive surgical treatment involving tubes called shunts that
decrease the pressure.
Lorber developed criteria to predict which spina bifida babies, if left untreated,
would die: the higher the meningomyelocele on the spine and the larger the affected
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area of the spine and its coverings, the greater the probability of death. These cri-
teria had risks and a dilemma: If left untreated, not all infants with spina bifida
die, and for infants who live, nontreatment makes them worse off.
Lorber’s criteria seemed to make it possible to identify babies who would die:
All those in his lowest category did die. During the 1970s, criteria like that of Lorber
were apparently used at Oklahoma Children’s Hospital, where pediatricians decided
not to treat 24 babies with spina bifida who were in the lowest category and all of
whom subsequently died.6
Ancient History
In ancient Athens, both Plato (in Republic) and Aristotle (in his Politics) advocated
killing impaired newborns. In ancient Sparta, a cyclops baby (i.e., an infant born
with a single eye or with two eyes fused) would be left to die in a field.
Exposure was also practiced by ancient Romans, who abandoned deformed
babies. During the next four centuries, exposure remained common, such as letting
die was legal and not considered infanticide. In contrast, the Bedouin tribes of
Arabia, the Chinese, and much of India practiced female infanticide for two
millennia.7
About 300 A.D., the Roman emperor Constantine converted to Christianity and
then outlawed both abandonment and infanticide. However, the church had neither
funds nor people to care for abandoned babies. Foundling hospitals did not start
until the eighth century in Milan.
During the Middle Ages, wet nurses acted as agents for parents wishing to rid
themselves of children (a practice that continued well into the nineteenth century).
In the eighteenth century, when the population of Europe exploded, exposure-as-in-
fanticide became a form of extreme birth control. During the reign of Napoleon,
women abandoned so many babies that Napoleon established his own foundling
hospitals, where parents could deposit a baby on a turntable set into the front
entrance, spin it to send the baby inside, and depart unseen. In France in 1833,
mothers abandoned over 100,000 babies—20 to 30 percent of all births.8
1981: THE MUELLER CASE: CONJOINED TWINS
In 1981, twins joined at the trunk and sharing three legs were born in Danville,
Illinois, to Pamela and Robert Mueller.9 Physician Robert Mueller watched in the
delivery room as their family physician, Petra Warren, delivered the babies, Jeff and
Scott. The Muellers and Warren decided together not to treat the twins aggressively,
so they could die.
Other physicians in Danville were divided deeply over the ethics of the Muel-
lers’ decision. An anonymous caller alerted Protective Child Services, which obtained
a court order for temporary custody of Jeff and Scott.
Prosecutors charged the Muellers with neglect. Later a judge dismissed that
charge, but also denied the Muellers custody. In September 1981, after pediatric
surgeons testified that they would be unlikely to successfully separate the twins and
that the twins had a bleak prognosis, the Muellers regained custody.
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160 Chapter 7 Impaired Babies and the Americans with Disabilities Act
The twins lived, still joined, for about a year, at which time they weighed
30 pounds.10 Shortly thereafter, surgeons separated them in a long operation. Scott,
the weaker twin, died at age 3; but Jeff, the stronger twin, survived, and later
entered a regular school.
Perhaps we should also question the necessity of separating the conjoined twins
in the first place. The desire for normality and to have singletons often creates an
unstoppable force to turn all children into normal-looking singletons (a topic dis-
cussed in Chapter 12), but perhaps this merely reflects the prejudice of able-bodied
singletons.
1982: THE INFANT DOE CASE
The Infant Doe case in Bloomington, Indiana, took place about one year after the
Mueller case, but over the course of only a few days—from Infant Doe’s birth on
April 9, 1982, to its death on April 15. Infant Doe had Down syndrome with tra-
cheoesophageal fistula, and once again, physicians split over forgoing treatment.11
The prognosis for tracheoesophageal fistula is more serious than for duodenal
atresia and depends on the severity of the fistula or gap. Infant Doe had a fairly
small gap, and an early operation to close it would have had a 90 percent chance
of success. However, in discussing the case with the parents, the referring obstetri-
cian, Walter Owens, emphasized that some Down people are “mere blobs” and that
the “lifetime cost” of caring for a Down child would “almost surely be close to
$1 million.” Infant Doe’s parents decided not to allow the operation.
Hospital administrators and pediatricians disagreed with the parents’ decision
and contacted Monroe County judge John Baker. Owen testified before Baker that
even if surgery were successful, “the possibility of a minimally adequate quality
of life was nonexistent” because of “the child’s severe and irreversible mental
retardation.”
Infant Doe’s father, a public school teacher who had worked closely with Down
children, agreed with Dr. Owens and felt that such children never had a “minimally
acceptable quality of life.” Judge Baker held this hearing late at night in a room at
the hospital where no one recorded it and did not appoint a guardian ad litem for
Infant Doe. The judge then ruled for the parents.
The county district attorney appealed to the County Circuit Court and after
losing there, to the Indiana Supreme Court. Both appeals failed. He then appealed
to U.S. Supreme Court Justice Paul Stevens for an emergency intervention, but
Infant Doe died, making the case moot.
Seven years later in 1989, the U.S. Civil Rights Commission cited the Infant
Doe case as a landmark case of prejudice against disabled infants. Owens wrote
about the Infant Doe case that he was “proud to have stood up for what I and a
large percentage of people feel is right”; he also said he was glad that Infant Doe
had died in only a few days and with little suffering and that he was glad that the
parents were able to have another baby—a healthy child who, if the couple had been
forced to treat Infant Doe, would not have been born. The commission concluded
that Owens’s evaluation was “strikingly out of touch with the contemporary evi-
dence on the capabilities of people with Down syndrome.”12
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 161
1982–1986: The Baby Doe Rules
National media extensively reported the Infant Doe case, which prompted President
Ronald Reagan to direct the Justice Department and the Department of Health and
Human Services (HHS) to mandate treatment in future cases. Reagan, who opposed
abortion, had appointed C. Everett Koop as Surgeon General. Koop had previously
written a book opposing nontreatment of impaired newborns.13
Because states and not the federal government define crimes such as homicide
and gross negligence, Reagan’s Justice Department needed to find an indirect route
to making nontreatment illegal. This department found a way to do so.
The executive branch can set social policy by reinterpreting prior congressional
legislation. In the 1960s, President Lyndon Johnson reinterpreted old laws to fight
racial discrimination. Institutions violating the new interpretations then risked los-
ing all federal funds.
Through similar executive orders, lawyers for the Justice Department in 1982
newly interpreted nontreatment to violate Section 504 of the Rehabilitation Act of
1973, which forbade discrimination solely on the basis of handicap. This interpre-
tation saw imperiled newborns as handicapped citizens who could suffer discrimi-
nation against their federal civil rights. Of course, Congress had originally meant
this act to apply only to adults and children with handicaps, not babies.
HHS then required large posters to be displayed on the outer glass walls of
every NICU:
discriminatory failure to feed and care for handicapped infants in this facility
is prohibited by federal law.
It also posted a toll-free 800 telephone number on the poster so anyone around
an NICU could report abuses—including concerned nurses, disgruntled parents,
ambulance-chasing lawyers, and anonymous cranks. New Baby Doe squads, com-
posed of lawyers, government administrators, and physicians, investigated
complaints.
In 1983, the American Academy of Pediatrics successfully sued in a federal
district court to block the Baby Doe rules. While this suit ran, the Baby Jane Doe
case began.
Before we turn to it, we should describe the Baby Doe hotline and the Baby
Doe squads. As long as they existed, the Baby Doe squads were ready on an hour’s
notice to rush to airports, fly across the country, and suddenly arrive—as a squad
arrived one day at Vanderbilt University—like outside accountants doing a surprise
bank audit. They seized records, took charts from attending physicians, and inves-
tigated all night. The squads thought they saved the lives of innocent babies.
Besides Vanderbilt, the University of Rochester also suffered (in the words used
privately by some pediatricians) a “blitzkrieg by the Baby Doe Gestapo.” Eventually,
because of the objections by pediatricians and the national press, the squads were
called off.
What was the ultimate effect of the hotline and the squads? One study discov-
ered that Baby Doe squads did in fact force more treatment for six infants, who had
operations they otherwise might not have had, but in no case did the squads prove
a violation of the Baby Doe regulations.14
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162 Chapter 7 Impaired Babies and the Americans with Disabilities Act
1983–1984: THE BABY JANE DOE CASE
On October 11, 1983, physicians delivered Baby Jane Doe at St. Charles Hospital of
Long Island, New York. Because she had several major defects, they transferred her
to the NICU at University Hospital of the State University of New York (SUNY)
campus at Stony Brook. This case resulted in landmark changes in American law
for babies born with disabilities.
Her parents—known only as Linda and Dan—worked hard to improve their lives
as lower-middle-class people. Linda, 23, and Dan, 30, had been married four months
when Linda became pregnant.
Baby Jane weighed 6 pounds and was 20 inches long. According to testimony,
at birth she had spina bifida, hydrocephalus, a damaged kidney, and microcephaly
(small head, implying a minimal brain or lack of most of the brain, a condition later
associated with the Zika virus and mosquitoes). Her defects surely traumatized her
parents. For one thing, her spine was open with the meningocele protruding
prominently.
At Stony Brook, surgeon Arjen Keuskamp recommended immediate surgery to
minimize retardation by draining the hydrocephalus. When Baby Jane was exam-
ined by George Newman, a pediatric neurologist, he told Dan that Baby Jane would
either die soon without surgery or could undergo surgery and be paralyzed, men-
tally impaired, and vulnerable to continual infections in her bladder and bowels.
According to Newman’s later court testimony:
The decision made by the parents is that it would be unkind to have surgery per-
formed on this child. … On the basis of the combination of malformations that are
present in this child, she is not likely to ever achieve any meaningful interaction with
her environment, nor ever achieve any interpersonal relationships, the very qualities
which we consider human.15
Keuskamp withdrew from the case and did not testify in court. About midnight on
October 11, 14 hours after Baby Jane’s birth, Newman probably told Dan something
like his testimony in court.
After soul-searching, Dan and Linda decided not to allow the operation to drain
the hydrocephalus. They acted on their understanding of the distinction between
extraordinary and ordinary treatment, disallowing surgery but allowing “comfort
care”: food, fluids, and antibiotics.
Based on what they had been told, they assumed that Baby Jane would soon die,
but four days later she was still alive. A social worker wrote at this time that Dan was
in “despair” because Baby Jane had not yet died; she also noted that Linda was deter-
mined to give Baby Jane “as much love as possible” while the infant was still alive.
“We love her very much,” Linda said, “and that’s why we made the decision we did.”16
Newsday reporter Kathleen Kerr broke the Baby Jane Doe story nationally on
October 18, 1983. Kerr, who had numerous firsts on the story, was also the only
reporter at the time to interview the parents. She described the interview:
Each time he began a sentence, Mr. A. let out a deep sigh, as though seeking
strength to answer. Mrs. A. continually touched her husband’s arm and rubbed it
soothingly. Mr. A. shed his tears openly. … Mr. A. said, “We feel the conservative
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method of treatment is going to do her as much good as if surgery were to be
performed. It’s not a case of our not caring. We very much want this baby.” …
“We’re not being neglectful, and we’re not relying on our religion [Catholicism]
to give us the answer to what we’re doing here.”17
Baby Jane Doe continued to survive, and—as occurs naturally in some cases of spina
bifida—her open spinal wound closed.
1983–1986: Baby Jane’s Case in the Courts
On October 18, 1983 (the same day that Kerr broke the story), Lawrence Washburn,
a municipal-bonds lawyer and right-to-life advocate who lived in Vermont, filed suit
in a state court to force treatment for Baby Jane. Over the following weeks, the case
sped through the courts, because everyone wanted to avoid a repetition of the Infant
Doe case, where the baby died during appeals.
Judge Melvyn Tanenbaum held an emergency lower-court hearing on October
20. Because Washburn lacked legal standing to sue, Tanenbaum appointed another
attorney, William Weber, as Baby Jane’s guardian ad litem (“for this action or pro-
ceeding”) and empowered him temporarily to make decisions regarding Baby Jane’s
medical care.
At first, Weber supported the parents, but then an interesting fact surfaced.
Having talked to Newman, Weber abruptly changed his mind when he read two
items in Baby Jane’s medical chart. First, he read that Newman had written that
after surgery, Jane would be able to walk with braces.18 Second, her chart said that
the initial measurement of her skull was 31 centimeters, within normal limits. This
measurement indicates that Baby Jane may have had a normal brain.
Yet Newman had testified that the baby had microcephaly and would never be
able to recognize her parents. Weber concluded that what Newman had written on
the chart conflicted both with what he had told the parents and with his testimony
in court. So dramatically, Weber decided that Newman’s claim of microcephaly was
“a lie” and on October 20, authorized surgery.
The case ended up in the appellate division of New York courts. The justices
there decided that the law left decisions up to parents when a choice was available
between two medically reasonable options. Interestingly, previous rulings of courts
had required a “medically reasonable option” to be an option that was not only
supported by evidence but was also in the interest of the child. The new judgment
contradicted these precedents.
These court hearings splashed across front pages of American newspapers. Per-
haps this immense publicity created too much pressure. The courts seemed to forget
about the traditional doctrine of parens patria, according to which the state protects
helpless people against those who might neglect them.
After these court proceedings concluded, the parents said:
I just want [all this] to end. Just to have a baby like this and deal with it is so much
to go through right now. Just let us be with our daughter and leave us alone. … If
there’s hell, we’ve been through it.
By this point, however, the federal government had begun to act.
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164 Chapter 7 Impaired Babies and the Americans with Disabilities Act
In October, the Justice Department informed Stony Brook Hospital that federal
investigators wanted to see Baby Jane’s medical records. This intrusion outraged the
parents: “They’re not doctors, they’re not the parents, and they have no business
in our lives right now.”19
Stony Brook’s lawyer then announced that the hospital would block the gov-
ernment from examining the records. HHS turned the case over to the Justice
Department, which sued the hospital in federal court, charging possible discrimi-
nation against the handicapped. Attorney General Edwin Meese and Surgeon Gen-
eral Koop personally led the suit.
Federal judge Leonard Wexler then ruled that the Justice Department could not
have the medical records and that the parents had not decided against surgery for
“discriminatory” reasons. (It is not clear if Judge Wexler had examined Baby Jane’s
hospital chart.)
The ruling pleased the parents. “I’m drained physically, mentally, and emotion-
ally,” Dan said, “I believed that you couldn’t look at what we were doing and say
we were wrong.”
In 1984, the case reached the federal Court of Appeals for the Second Circuit,
which again denied the government access to Baby Jane’s records. This decision,
which would presumably apply in similar cases, had the practical effect of making
the Baby Doe rules useless: Because the government could not obtain medical
records from NICUs or hospitals, it could not enforce the Baby Doe rules.
The Justice Department appealed to the U.S. Supreme Court, and two years
later in 1986, in Bowen v. American Hospital Association et al., the Supreme Court
declared that no records needed to be released and, in effect, ended the Baby Doe
rules, their national hotline, and their possible investigators.
Follow-up on Baby Jane Doe
Amazingly, during the court battles over Baby Jane, Linda and Dan changed their
minds and permitted surgery to drain her hydrocephalus—a decision that became
known only months later.20 After contracting pneumonia, physicians gave the baby
strong antibiotics, without which she might have died. At that time, one physician
predicted that she would “probably always be bedridden.”21
Baby Jane continued to live and went home on April 7, 1984, at age five-and-
a-half months. Her real name was Keri-Lynn and we will use that in this text from
now on because using her real name makes her a person, and not just a case.
Five years later, Keri-Lynn lived at home with her parents. According to Kathleen
Kerr, whose stories about the case won a Pulitzer Prize for local reporting and who
visited with the family over those years, Keri-Lynn was:
… doing better than anyone expected—talking, attending school for the handi-
capped, and learning to mix with her peers. She still can’t walk and gets around in
a wheelchair but her progress has defied the dire predictions.22
In 1994, another reporter interviewed Keri-Lynn and her family:
Now a 10-year-old, … Jane Doe is not only a self-aware little girl, who experiences
and returns the love of her parents; she also attends a school for developmentally
disabled children—once again proving that medicine is an art, not a science, and
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clinical decision making is best left in the clinic, to those who will have to live with
the decision being made.23
Kerri-Lynn had seizures for her first 12 years, but these became more controlled
when she became a teenager.
In 1998, Paul Gianelli, who represented the parents in their legal battles, told
reporters that Keri-Lynn was 15 years old and still living with her parents, who
guard her privacy and theirs. “It was a very sad case and yet satisfying,” said
Gianelli, who ultimately won in court for the parents.24
In 2003, Dan and Linda granted another interview when Keri-Lynn was 20.25
A reporter saw Keri-Lynn with her father watching her sister cheerleading below
and heard her say:
“Nothing gets better than this, Dad,” Keri-Lynn said to the man who carried her all
the way up the steps [from her wheelchair]. “You and me, watching the football game.”
At 20, Keri-Lynn loved to talk. She lived with her three teenage sisters, mother,
and father on Long Island. A bus picked her up each day at 8 am for a school for
people with special needs and returned her at 3 pm, when she would often roll her
wheelchair up the sidewalk.
At 5 feet tall, the 86-pound woman wore a cast to keep her back and legs strong.
Her mother or a school nurse changed a catheter to drain her urine four times a
day; they hoped that one day occupational therapy could teach her to change it
herself so that Keri-Lynn could live independently in a group home. Surgeons oper-
ated repeatedly for infections in the shunt in her head and, later, to correct problems
in her hips, calves, and heels.
At 20, she appeared more normal emotionally and socially than academically.
She had learned only the alphabet and to count but had not mastered reading
books. She appeared very integrated with, and dependent on, her immediate family
and on her strong publicly funded special school.
On October 11, 2013, Keri-Lynn celebrated her 30th birthday at a group home,
into which she had moved two years before. From her picture at that party, she
appeared to have aged prematurely, looking 60 rather than 30. Keri-Lynn still then
took drugs to control her seizures and wore a full-body brace for spinal support.
She liked to play solitaire on her iPad. At the party, her mother said, “She’s happy;
I’m content. I just take one day at a time. That’s the only way to do it with a child
with disabilities.”26
Media Ethics and Bias
The reporting of Baby Jane’s case in the print and visual media raised some dis-
turbing questions, especially when we consider that Jane not only survived but later
had a life that, to her, was meaningful. Recall that Dr. Newman had testified that
Jane would never achieve any meaningful interaction with the world or any inter-
personal relationships. Why did Newman’s opinion prevail?
During 1983, the momentum of the media in support of the parents—and with
it the momentum of medicine and medical ethics—became so strong that the media
portrayed any dissenters as bigots. People read reports of the Baby Jane Doe case
with their minds made up. In November, when Lesley Stahl grilled Dr. Koop on
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166 Chapter 7 Impaired Babies and the Americans with Disabilities Act
Face the Nation, her tone painted him as a fundamentalist, parent-baiting Big Brother.
Ed Bradley on 60 Minutes did a similar hatchet job on Koop.
From today’s perspective, Koop’s answers during these interviews were impres-
sive: He said that the medical chart had discrepancies and that he merely wanted
to see it to learn what was best for the child.
One pediatric neurosurgeon who had treated over 1,000 patients with spina
bifida said that children whose heads measured 31 centimeters (as Baby Jane’s did)
are among “the very brightest” of such children, presumably implying that Baby
Jane’s IQ could be normal or better.27 The public also did not learn that, although
hydrocephalus generally accompanies spina bifida, if shunted immediately, it may
not result in as much mental damage.
All the major media simply accepted George Newman’s negative prognosis,
almost all dismissed William Weber, the child’s court-appointed guardian, as a
fanatic. The media’s stance unduly influenced not only the general public but even
many physicians and medical ethicists, who took Newman’s depressing prognosis
as fact.
In retrospect, another astonishing aspect of the story escaped the public’s
notice. When Stony Brook Hospital resisted Koop’s attempt to see Baby Jane’s med-
ical chart, the hospital’s motives might have been not only to protect the privacy of
the family but also to protect itself from a court suit. Given that what Newman had
written in the chart contradicted what the parents had heard him say, one can see
that the hospital had a big problem.
Beyond a doubt, pediatricians disagreed about which treatment was best for
Baby Jane and about the “medically reasonable options” in this case. Unfortunately,
the public never read about the two real sides of this medical controversy. As a
result, the public came to believe that the case involved only moral questions about
parental decisions and low quality of life, when in fact it raised questions about
making decisions based on incomplete, biased information and a hospital protecting
itself from suit.
It is astonishing that a story for which the journalist won a Pulitzer Prize had
such major errors and omissions. It is astonishing that neither the New York Times
nor the Wall Street Journal then checked the story’s facts independently. During this
time, the media so much favored the parents that it was politically impossible for
any reporter to present another side.
Perhaps, too, it shows how hard the story was to understand and how difficult
it is for the public to get the real medical facts. Physicians usually will not talk to
reporters about a controversial case and will not criticize colleagues to reporters. So
the public finds out only in court what is really happening. All in all and in retrospect,
the Baby Jane Doe case has become a landmark case for right-to-life groups and dis-
ability advocates about how cases don’t always turn out in predicted, depressing ways.
ETHICAL ISSUES
Selfishness
Theologian James Gustafson said Baby Jane Doe’s parents selfishly did not want
Baby Jane to live.28 For him, Judaism and Christianity require us to live our lives
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 167
for others. Dr. Koop argued similarly, “Why not let the family find that deeper
meaning of life by providing the love and the attention necessary to take care of
an infant that has been given to them?”29
In contrast, the late bioethicist John Fletcher said that he could “stand by the
parents” in such cases and “would not want to come down real hard on them” for
letting a baby die by forgoing treatment.30 Also, if living for others is a religious
value, should atheists and agnostics be forced to live by it?
Reluctance to raise a profoundly disabled child is not necessarily selfish and
may be simply realistic. For a couple, raising a severely disabled child usually means
that one parent must give up a job. Because people with Down syndrome had an
average lifespan of 50 years in 2013, and some lived into their 70s, some adult Down
children will outlive their parents. Is it really selfish for parents to decide that they
are not called to spend their lives caring for such a person, especially if at birth
they can choose a normal child?
Disability advocates argue that disadvantaged children cannot be allowed to die
merely, because they don’t fit into their parents’ plans. Part of the responsibility of
having sex, and thinking about possible childbirth, is to accept whatever comes
along. We can’t let parents adopt the attitude of, “I’ll only be a parent if my child
is healthy and normal.” They stress that family values mean that everyone pulls
together to help the least well-off member, whether that person is Baby Doe or
Granny Doe. They reject the conceptualization of this case as parental autonomy
versus Big Brother.
On the other hand, if we do not consider the family’s good in some way, are we
not implying that every family must accept the birth of an impaired child, no matter
what? As an institution, the family today seems shaky; how much can it take?
Personal versus Public Cases
Was Baby Jane’s case a private, personal family decision or a case of neglect that
public policy must not tolerate? One critic argued that “private individuals and
private groups of individuals don’t have the right to make life-or-death decisions
in private in an unaccountable manner.”31 And we don’t tolerate child abuse in the
private homes of citizens.
On the other hand, many people at the time argued that Baby Jane’s parents
should have been left alone to make decisions. As Newsday writer Fred Bruning
wrote:
Travelers familiar with Beirut claim it is a city lost to hope because consensus is
impossible. Perhaps it can be said that parents of severely damaged children inhabit
a Beirut of the spirit, a place where innocence has no armor, where there is no
distinction between suffering and survival. The rest of us are strangers, and we
ought to let the parents consult the doctors, reach their decisions, tend to their
babies, grapple with their lives. We ought to respect their heartache and their
wishes. We ought to leave them in peace.32
In 1983, Tennessee intervened over a father’s religious objections to chemo-
therapy for his 12-year-old daughter Pamela Hamilton, who had leukemia. Another
such case occurred in Boston in 1988, when a young child became ill; the child’s
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168 Chapter 7 Impaired Babies and the Americans with Disabilities Act
parents, who were Christian Scientists, called a practitioner instead of a physician;
after apparently improving for a while, the child suddenly died five days later.
Boston district attorney Newman Flanagan charged them with manslaughter.
In the presidential elections of 2008 and 2012, Sarah Palin’s son Trig, with
Down syndrome, and Bella, Rick Santorum’s daughter with Trisomy 18, became
campaign issues. In Texas in November 2013, 33-year-old Marlise Munoz, at week
14 of her pregnancy, had a pulmonary embolism that rendered her unconscious for
an hour and brain dead, but against her wishes and that of her husband, physicians
kept her body alive on a ventilator because of a 1989 Texas law prohibiting with-
drawal of life support from a pregnant woman. The law essentially held that the
interests of a 14-week-old fetus outweighed those of the mother or family. Her
husband argued in court that she was legally a cadaver and the law did not apply
to cadavers. In January 2014, a judge agreed and physicians withdrew the ventilator
and Marlise and her fetus were buried. The decision did not attack the correctness
of the overall law.33
Clearly society must strike a balance between allowing parents some choice
about medical treatment of their children and protecting vulnerable children from
misguided parents.
Abortion versus Infanticide
Today, many pregnant women undergo amniocentesis or sonograms, and if the
results indicate a fetus with a chromosomal abnormality, many terminate the preg-
nancy and try again for a healthy baby. Such abortions can take place legally late
in the second trimester, when the fetus is large and perhaps at a stage of develop-
ment where some premature babies are saved.
When amniocentesis indicates spina bifida, the fetus will almost always be
aborted. But if spina bifida justifies abortion, why doesn’t it also justify letting a
newborn with spina bifida die? Similarly, if an abortion is permissible because the
fetus has Down syndrome, why shouldn’t Down syndrome justify allowing a baby
to die?
Birth, after all, does not change the medical condition: In this sense, it can
be argued that the significance of birth is merely symbolic. Note that this logic
is neutral between opposed moral conclusions about nontreatment. If there is no
good reason why a neonate with spina bifida should be allowed to die, then
presumably there is no good reason why a fetus with spina bifida should be
aborted.
If parents want to forgo treatment in these cases, should they be required to
justify the decision? Should they simply be left alone? When a woman decides to
abort a healthy fetus, she is not required to give good reasons. Why are we so much
more concerned when the fetus is abnormal?
Conceptually, the problem is to find a consistent position that includes accept-
ing abortion but opposes letting parents decide to forgo treatment in a Baby Doe
case. If one accepts choice with regard to abortion because of a Down fetus, should
one also not accept choice about parents letting a Down newborn die? Or perhaps
one should oppose both?
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 169
Killing versus Letting Die with Newborns
As discussed in Chapter 2, the late James Rachels asked whether it would not be
more compassionate to simply kill impaired and imperiled newborns than to let
them die slowly by forgoing treatment.34 Rachels argued this way: In both forgoing
treatment and infanticide, the motive (death of the baby) is the same, and so is the
result (death of the baby). If both decisions have the same motive, and if both lead
to death, how can the two differ morally?
This might seem to be a matter of simple logic: Whatever makes one decision
good (or bad) should also make the other decision good (or bad). If so, the kind of
action itself, as to its active or passive nature, should make no difference.
Some bioethicists disagree. People make mistakes and killing is too final. In
contrast, allowing a person time to die leaves the door open for a while, during
which mistakes can be corrected or opinions can change. Another argument for
forgoing treatment is that it shows more respect: A quick end cheapens life, but
forgoing treatment makes parents and professionals suffer through the ordeal of
dying.
Personhood of Impaired Neonates
Before he became Surgeon General, Dr. Koop wrote that “each newborn infant,
perfect or deformed, is a human being with unique preciousness because he or she
was created in the image of God.”35 On the other hand, Catholic theologian Richard
McCormick argued that an infant can realize some “good” of its own only if it can
potentially form human relationships.36 So Koop assumed that any human newborn
is a person, whereas McCormick’s criterion would rule out anencephalic (brain –
absent) babies as persons.
McCormick’s potential-for-relationships standard is a reasonable attempt to delimit
personhood, but it has problems. It can be difficult to predict potential for relation-
ships at birth, and it also seems to depend on the attitude of parents. Associations
of parents of babies with spina bifida hold that a person’s potential cannot be
known until his or her life is lived.
The gradient view of personhood (discussed in both Chapters 3 and 4) asserts
that the developmental stage of the fetus/baby really does matter morally. A crying
baby differs a lot from a two-day-old embryo. Several neuroscientists and bioethi-
cists believe that personhood develops along a gradient, such that the further along
this continuum, the more the fetus is a person. This view rejects the all-or-nothing
fallacy that an embryo or fetus is not a person one moment, but a person the next.
On the gradient view, it’s worse to kill fetuses than embryos, and it’s worse to
kill fetuses just before birth than in the first trimester (which explains why many
physicians are reluctant to perform so-called partial birth abortions). Similarly, a
Down baby differs from a Down fetus: The former has more moral status and rights.
The death of a baby requires more justification than the death of a fetus.
The distinctions of the gradient view drive some opponents to claim that no
difference in personhood or moral status exists between human embryos and human
babies. Both sides agree about the gradient and the continuum of personhood, but
the sides disagree about the proper inferences to draw from this fact.
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170 Chapter 7 Impaired Babies and the Americans with Disabilities Act
In Baby Doe cases, some bioethicists champion the cognitive criterion of person-
hood. It identifies certain characteristics, including reason, agency, memory, and
self-awareness, and assumes that without them, personhood does not exist.
With regard to impaired infants, bioethicist Peter Singer once used the cognitive
criterion to argue that children should not be regarded as persons until “a few
months” after birth; physician and philosopher H. Tristram Engelhardt, Jr. once held
that infants are not persons until they form a self-concept, around the age of 2 (he
has since given up this position). Philosopher Michael Tooley holds that they are
not persons until they can use language.37 For Singer, Engelhardt, and Tooley, new-
borns fail to meet the cognitive criterion.
Some families use the cognitive criterion in letting adult relatives die. However,
its application to impaired newborns may be more questionable. Allowing parents
to forgo treatment for an imperiled neonate is one thing; claiming that a child is
not a person until age 2 seems to be quite another.
Kinds of Euthanasia
Cases of treatment versus nontreatment are often wrongly lumped together with
assisted suicide and physician-assisted dying—all as “euthanasia.” This is confusing
and possibly dangerous. As argued in Chapter 2, we should differentiate physi-
cian-assisted dying, which involves terminally ill competent adults, from assisted
suicide, which involves nonterminal competent adults; we should also distinguish
these from nontreatment of incompetent adults in persistent vegetative state (PVS)
and distinguish the above from allowing impaired newborns to die.
One reason why such distinctions matter has to do with criteria for forgoing
treatment. Criteria for nontreatment of never-competent patients should presumably
be much higher than the criteria for competent or formerly competent patients
whose own wishes can be known or inferred. We need to prove beyond a reasonable
doubt that an impaired, presently incompetent patient would be better off dead
than being treated to live some kind of life later as an adult.
Degrees of Defect
In practice, criteria for nontreatment of impaired babies tend to be based on long-
term prognoses and degrees of defectiveness in newborns.38 Babies whose problems
are “less serious” should be treated, whereas it would be permissible to let die babies
who are “most serious” or “gravely ill.”
Cases between these two poles—cases such as spina bifida and Down syndrome—
create controversy because prognosis is far from absolute and may be influenced by
moral frameworks.
Consider John Lorber’s predictive criteria for spina bifida. One critic of Lorber’s
approach is his colleague at the same hospital, pediatric surgeon R. B. Zachary.
Zachary argues that the only options for babies with spina bifida are either to kill
them or to do everything possible for them. Basically, he is saying that there is no
category of babies with spina bifida who can be “allowed to die.”
Lorber and some other pediatricians say that the mortality rate is high for
babies they place in the “worst” category of spina bifida, but Zachary maintains
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 171
that these physicians do not simply withhold treatment. According to Zachary, they
“push the infant toward death” by giving:
… eight times the sedative dose of chloral hydrate recommended in the most recent
volume of Nelson’s Pediatrics and four times the hypnotic dose, and it is being
administered four times every day. No wonder these babies are sleepy and demand
no feeding, and with this regimen most of them will die within a few weeks, many
within the first week.39
Prognoses about the intelligence of impaired people seem to be influenced by
social views. Down syndrome is a good example, especially because of the external
characteristics associated with it. Let’s briefly consider Down syndrome in more
detail.
During the last 50 years, a Copernican revolution has occurred in thinking
about Down people.40 Many earlier studies of IQ on Down people who were insti-
tutionalized were flawed. A sampling bias failed to take into account the higher IQs
of Down people who lived with supportive families.
At present, although most Down syndrome people will have IQs below 70,
less than one-third (some studies say only 10 percent) will have IQs lower than
25 (profoundly mentally deficient and untrainable).41 Most Down people who
receive good early care, maximum stimulation, and support will have IQs between
50 and 70.
What does this imply about quality of life for a Down person? IQ is a measure
of intelligence, of course, and academics and physicians often associate intelligence
with happiness. However, it is an unwarranted conclusion to infer that people with
IQs between about 50 and 70 must be unhappy, unless we simply define unhappi-
ness in those terms.
Given reasonable stimulation, love, and supervision, most Down people will,
to use a phrase made important in ethics by philosopher Tom Regan in another
context, “have a life.”42 Almost every Down person will have a narrative history and
lives that will go (to use another famous phrase from Regan) “better or worse for
them.” Under almost any criteria of quality of life, most people with Down syn-
drome would not be better off dead.
Note the mention of early care, stimulation, and support; the prognosis for
Down syndrome varies with treatment: Early stimulation can raise IQ, whereas
merely custodial care will lower it. At birth, we cannot predict whether a Down
baby will be at the low or the high end of the IQ range; consequently, the best
interest of these babies is maximal treatment. Whether maximal treatment best
benefits their families is another question.
Wrongful Birth versus Wrongful Life
Parents can sue physicians in civil courts for allegedly causing babies to be impaired.
Today, few parents simply accept birth defects as God’s will; standards of health
continue to rise, and couples expect healthy babies. Parents often blame physicians
for the birth of impaired babies.
Both wrongful life and wrongful birth suits fall into the general classification of
tort law, and in both kinds of actions compensation for a harm or “tort” is sought.
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172 Chapter 7 Impaired Babies and the Americans with Disabilities Act
As discussed in Chapter 5, it is important to distinguish between different
meanings of “harm.” Like the concept of good, harm covers a broad range of mean-
ings. For our purposes here, we can distinguish three broad meanings.
In the first way, both a baseline and a temporal (time) component are necessary
so that a change occurs that makes someone worse off. Baseline harm requires an
adverse change in someone’s condition. With baseline harm, someone who doesn’t
yet exist cannot be harmed, because he or she has no baseline from which change
can occur.
The second way of defining harm compares a present deficiency with what
normally would have been. In this abnormal harm, someone is injured by being
brought into existence with some defect that could have been avoided by taking
reasonable precautions. Here, the event or omission that causes the defect is the
cause of harm.
Third, harm may be defined as a life of total pain and injury, such that no hope
exists. Perhaps this is the lot of many pigs raised in industrial factory-farms, con-
fined their whole lives and squashed together for maximal profits in tiny metal pens
with their tails cut off. Let us call this third harm total harm. To some of its critics,
reproductive cloning would be so bad for the child as to constitute total harm.
Preventing abnormal harm underlies the belief that parents should do every-
thing possible to have healthy, unimpaired babies; that anything less than the max-
imal effort is blameworthy; and that it is wrong for a woman to take risks with a
future person’s intelligence or health. In this sense, deaf parents harm their children
when they implant only embryos genetically disposed to be deaf.
Total harm in the law is called wrongful life. In such cases, lawyers claim that
the lives of some babies are so miserable that their existence is a tort. In contrast,
wrongful birth assumes abnormal harm and claims not that the child’s life is totally
miserable, but that the child has been damaged by being born less than normal,
and that a physician’s action or omission caused the relevant defect. Courts have
almost always rejected wrongful life suits, because courts have rejected the implica-
tion that killing a baby can benefit it.
Several well-publicized wrongful birth suits have been brought by parents
against physicians. In New Jersey, parents of a baby with Down syndrome sued
pro-life obstetrician James Delahunty, whom they say discouraged them from pur-
suing amniocentesis when a sonogram showed a fetus with a thick neck (a possible
sign in utero of this condition).43 The jury awarded the couple nearly $2 million
and found Dr. Delahunty guilty of “failing to recognize, appreciate, and discuss the
results of the tests, particularly ultrasound” with his patients. The verdict may have
stemmed partially from Delahunty’s combative behavior in the courtroom.
At least 27 states allow parents to sue for wrongful birth, although Michigan
and Georgia recently disallowed them. In a case in 1999, as well as another case in
1990, the Georgia Supreme Court ruled that a couple with a Down child could not
sue their physician for failure to perform amniocentesis or other prenatal tests.44
1984: Legislation
In 1984, Congress amended its Child Abuse Prevention and Treatment Act of 1974
(not the Rehabilitation Act) to count nontreatment in Baby Doe cases as child abuse.
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 173
The Child Abuse Amendments (CAA) circumvented the injunction against the Baby
Doe rules. They made states, not the federal government, responsible for such
cases—getting Uncle Sam out of the neonatal nursery.
The only exceptions to the CAA were (1) when an impaired child is “chronically
and irreversibly comatose,” (2) when a child is inevitably dying, and (3) when treat-
ment would be “futile and inhumane.” These exceptions are often interpreted
narrowly so as to give parents few choices. As one law professor sums it up, “Since
passage of the CAA, ethical and legal controversy over parental authority to with-
hold treatment from handicapped or disabled newborns … has largely ceased.”45
Problems resulting from such narrow interpretation were illustrated dramati-
cally in the Rudy Linares case, which took place in Chicago in 1989. Dan Linares
held an NICU staff at gunpoint while he disconnected the respirator of his 16-month-
old son Rudy, who—after swallowing a balloon at a birthday party—had gone into
PVS nine months earlier. Rudy soon died, and Dan Linares was charged with
first-degree murder.46 Because there was no doubt that Dan Linares was a caring
parent, a grand jury refused to indict him for homicide; he later received a sus-
pended sentence on a minor charge arising from his use of a gun.
1992: The Americans with Disabilities Act (ADA)
In 1992, the Americans with Disabilities Act (ADA) went into effect; this act protects
Americans with a wide range of disabilities from discrimination.
In 1994, a federal court specifically cited ADA in mandating treatment for a
16-month-old anencephalic infant, Baby K, who had been brought to a hospital
emergency room in Virginia in respiratory distress.47 Baby K had been on a respi-
rator since birth. Her physicians wanted to disconnect it and let her die, but for
religious reasons, her mother insisted on continued care. At its heart, Baby K’s case
was about whether physicians may overrule parents’ decisions about continuing
futile, expensive treatment without incurring charges of discrimination against the
handicapped. For over a year, Baby K continued to receive treatment, but she died
in 1995.
After two decades of legal wrangling about Baby Doe cases, the results are
equivocal. On the one hand, some impaired babies who would once have died as
a consequence of nontreatment now survive to lead meaningful lives. On the other
hand, the right of parents to make choices in cases of disabled newborns has
declined dramatically. As a result of the amendment to the child abuse act, most
NICU physicians usually overtreat severely impaired newborns.48
The ADA does not make it criminal for physicians to withhold treatment from
impaired newborns. Rather, it threatens to withhold federal funding from a state for
its programs. Even under this threat, no state has ever been found to be out of compli-
ance. Moreover, although thousands of such infants have had life-sustaining treat-
ment withheld or withdrawn, contrary to the guidelines in these regulations, no legal
charges have ever been brought against physicians, hospitals, or states for doing so.
Nevertheless, while the ADA imposed no criminal charges on physicians who
failed to comply with it, most obstetricians perceived it as requiring a presumption
in favor of treatment. And subjected to a barrage of lawsuits with every disabled
baby, obstetricians these days take few unnecessary risks.
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174 Chapter 7 Impaired Babies and the Americans with Disabilities Act
The Strength of Disability Advocates
Many pediatricians claim that in the 1950s, it was rare for a baby with Down syn-
drome to live long.49 Even after institutionalization, nontreatment intending death
was the norm, not the exception. Babies who survived were sent to be warehoused
in custodial institutions, where they were never stimulated or educated. They almost
always developed with low IQs.
Within pediatric neurology, opinion about treatment in Baby Doe cases changed
dramatically over the past decades. In the 1960s and early 1970s, the consensus was
that many such cases should not be treated; today, all but the most hopeless cases
are treated.50
For example, Lorber’s criteria concerning spina bifida initially swung the pen-
dulum toward nontreatment in many NICUs; but during the 1980s, right-to-life
organizations and disability advocates swung the pendulum back toward treatment.
Also, breakthroughs were made in urology, neonatology, neurosurgery, and CAT
scan diagnosis, and these not only increased the accuracy of prognoses but also
improved quality of life for such children.
These changes have led to a new understanding:
Mild to moderate degrees of microcephaly are compatible with normal or even
exceptional intellect. This is particularly true in cases of untreated meningomye-
locele in which loss of cerebrospinal fluid through the unrepaired hole in the back
may decrease the total mass of the head … Essentially all children with severe
meningomyelocele have hydrocephalus … Children with hydrocephalus who are
treated reasonably early and who do not develop meningitis have a better chance
than 50 percent of being intellectually normal.51
The Spina Bifida Association has stated:
Since we have found it virtually impossible to predict at birth which infants with
meningomyelocele will become competitive, ambulatory, and intellectually able, we
have not relied on arbitrary guidelines to determine which children should or
should not be treated. On the contrary, we believe that all such children should be
treated, and we feel that our data show this philosophy to be correct.52
The outcome in the Baby Jane Doe case, chosen for discussion because of its fame
but otherwise typical of spina bifida, makes this statement seem reasonable. More-
over, the unexpected outcome of the Mueller case and the newer prognoses for Down
syndrome suggest that similar reasoning may be appropriate regarding other defects.
Conceptual Dilemma: Supporting Both Choice and Respect
The parents of spina bifida child Leilani Duff-Fraker, born in 2004, love their daugh-
ter, but if their obstetrician had ordered the right tests, they would have aborted
her and tried again for a healthy child.53 Is that inconsistent? Can you love a child
whom you might have terminated as a fetus?
In some aspects, this question is analogous to the Ayala case, where parents
deliberately conceived a child to be a source of bone marrow for her older sister
with leukemia. The Ayala parents claimed that they would and could love Marissa
and not just see her as a resource for her sister. Philosopher Frances Kamm observes
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 175
that “love is for a particular,” not a potential child, but once the particular child is
born, love occurs.54
Public policy reveals a similar dilemma writ large. Is it consistent to do prenatal
testing for genetic diseases while at the same time telling adults with the same
diseases that they are respected? Is it consistent to test babies at birth for genetic
conditions such as phenylketonuria (PKU) and at the same time tell adults with
PKU that they are valued? Do funds for prevention of disabilities compete with
funds for services for disabled adults?55
UAB’s Support Study on Premies
From 2004 to 2009, Dr. Wally Carlo of University of Alabama at Birmingham (UAB)
and Children’s Hospital in Birmingham led 23 medical centers in the SUPPORT Study
(Surfectant, Positive Pressure, and Oxygenation Randomized Trial) to determine the
best level of oxygen to give to premature babies. Pediatricians randomly assigned
participating babies to either lower or higher oxygen levels that fell within an already
established range of the standard of care. Two of the babies in the low-oxygen group
suffered brain damage and one baby in the high-oxygen group suffered retinopathy
of prematurity but was not blind.
In a first in research ethics, the Office of Protection from Research Risks (OPRR)
of NIH intervened and said that parents had not been adequately informed of risks
of participation in the study. Public Citizen supported OPRR. This immediately led
a local lawyer to initiate a lawsuit on behalf of the three babies.
Virtually every pediatric bioethicist in the country defended the SUPPORT
study and severely criticized OPRR and Public Citizen for their intervention. None
of the babies was treated any differently than they would have been otherwise. If
research was not possible among “medically reasonable options” to determine the
most effective treatment, how could any research be done on such babies? The
editors of the New England Journal of Medicine agreed and in 2015, federal judge
Karon Bowdre dismissed the suit, which had cost Children’s Hospital and UAB
millions of dollars to defend.56
FURTHER READING
John Freeman, “On Learning Humility: A Thirty-Year Journey,” Hastings Center Report, May-
June 2004, pp. 13–16.
Fred Frohock, Special Care: Medical Decisions at the Beginning of Life, Chicago: University of
Chicago Press, 1986.
Loretta Kopelman, “Are the 21-Year Old Baby Doe Rules Misunderstood or Mistaken?” Pedi-
atrics, vol. 115, no. 3, March 2005, pp. 797–802.
John Robertson, “Extreme Prematurity and Parental Rights after Baby Doe,” Hastings Center
Report, July/August 2004, pp. 32–39.
Peggy and Robert Stimson, The Long Dying of Baby Andrew, Boston, MA: Little, Brown, 1983.
Amy Yurkanin, “UAB Probably Did Not Cause Injuries to Premature Babies, Judge Rules,”
Birmingham News, September 10, 2013, http://www.al.com/news/birmingham/index.
ssf/2015/09/uab_study_probably_did_not_cau.html (accessed February 6, 2016).
U.S. Commission on Civil Rights, Medical Discrimination against Children with Disabilities,
September 1989.
pen07945_ch07_157-178.indd 175 9/8/16 9:51 AM
http://www.al.com/news/birmingham/index.ssf/2015/09/uab_study_probably_did_not_cau.html
http://www.al.com/news/birmingham/index.ssf/2015/09/uab_study_probably_did_not_cau.html
176 Chapter 7 Impaired Babies and the Americans with Disabilities Act
DISCUSSION QUESTIONS
1. Suppose you were expecting a healthy baby and discovered that you were going
to have a Down syndrome baby or a baby with spina bifida. Would you be able
to care for the child?
2. Suppose you discovered the preceding issue in the first trimester of pregnancy.
Would it be selfish of you to abort the baby then and try again for a healthy baby?
3. Is testing of fetuses for genetic conditions, followed by abortions, a new kind
of eugenics? Should it worry people with disabilities?
4. Because it harms fetuses/babies so much, should it be illegal to smoke, drink,
or use drugs during pregnancy?
NOTES
1. A famous movie in medical ethics follows a case that is a collage of these three cases: Who Should
Survive? Produced by the Joseph P. Kennedy Foundation, Film Service, 999 Asylum Avenue, Hart-
ford, CT 10605.
2. James Gustafson, “Mongolism, Parental Desires, and the Right to Life,” Perspectives on Biology and
Medicine 16 (Summer 1973), p. 529.
3. R. Duff and A. Campbell, “Moral and Ethical Dilemmas in the Special-Care Nursery,” New England
Journal of Medicine 289, no. 17 (October 25, 1973), pp. 890–894.
4. John Lorber, “Results of Treatment of Myelomeningocele: An Analysis of 524 Unselected Cases,
with Special Reference to Possible Selection for Treatment,” Developmental Medicine and Child
Neurology 13, no. 2 (1971), pp. 279–303.
5. Laura J. Williams, “Decline in the Prevalence of Spina Bifida and Anencephaly by Race/Ethnicity,
1995–2002,” Pediatrics, 116, no. 3 (September 1, 2005), pp. 580–586.
6. Mary Tedeschi, “Infanticide and Its Apologists,” Commentary, November, 1984, p. 34.
7. John Boswell, The Kindness of Strangers: The Abandonment of Children in Western Europe from Late
Antiquity to the Renaissance, Pantheon, New York, 1989; Robert Weir, Selected Nontreatment of Hand-
icapped Newborns, Oxford University Press, New York, 1984.
8. William Lecky, A History of European Morals from Augustus to Charlemagne II, Braziler, New York,
1955, pp. 25–56 (originally published 1869).
9. Shari Staaver, “Siamese Twins’ Case Devastates MDs,” American Medical News, October 9, 1981,
pp. 15–16.
10. Bonnie Steinbock, “Whatever Happened to the Danville Siamese Twins? Hastings Center Report 17,
no. 4 (August–September 1987), pp. 3–4. See also John Robertson, “Dilemma in Danville,” Hastings
Center Report 11, no. 5 (October 1981), p. 7.
11. U.S. Commission on Civil Rights, Medical Discrimination against Children with Disabilities, Washing-
ton, D.C., September 1989, p. 391.
12. Ibid.
13. C. Everett Koop, “The Seriously Ill or Dying Child: Supporting the Patient and the Family,” in
D. Horan and D. Mall, eds., Death, Dying and Euthanasia, University Publications of America, Fred-
erick, MD, 1977, pp. 537–539.
14. Adrian Peracchio, “Government in the Nursery: New Era for Baby Doe Cases,” Newsday, November
13, 1983. Reprint, The Bay Jane Doe Story: Winner of the 1984 Pulitzer Prize for Local Reporting,
Newsday, 1983.
15. Kathleen Kerr, “An Issue of Law and Ethics,” Newsday, October 26, 1983; B. D. Colen, “A Life of
Love—and Endless Pain,” Newsday, October 26, 1983. (Available from Newsday in the reprint “The
Bay Jane Doe Story: Winner of the 1984 Pulitzer Prize for Local Reporting”); “Baby Jane Doe,” Wall
Street Journal, November 21, 1983.
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Chapter 7 Impaired Babies and the Americans with Disabilities Act 177
16. Kathleen Kerr, “Legal, Medical Legacy of Case,” Newsday, December 7, 1987.
17. Ibid.
18. Bonnie Steinbock, “Baby Jane Doe in the Courts,” Hastings Center Report 14, no. 1 (February 1984),
p. 15; Hastings Center Report 14, no. 4 (August 1984).
19. Kerr, “Legal, Medical Legacy of Case,” Newsday, December 7, 1987, p. 2; see also Kathleen Kerr,
“Reporting the Case of Baby Jane Doe.” Hastings Center Report 14, no. 4 (August, 1984), pp. 7–9.
20. “Baby Jane Doe Has Surgery to Remove Water from Brain,” New York Times, April 7, 1984, p. 28.
21. Ibid.
22. Kerr, “Legal, Medical Legacy of Case.”
23. Hastings Center Report 24, no. 3 (May–June 1984), p. 2.
24. Rhoda Amon, “A Long-Running Morality Play,” Oral History Archives, Long Island Museum, Stony
Brook, Long Island, NY.
25. Jamie Talan, “A Fighter’s Spirit: 20-yearold Keri-Lynn—Baby Jane Doe—Beat the Odds,” Newsday,
October 13, 2003, p. A3, A22.
26. Nicole Fuller, “‘Baby Jane Doe’ at 30: Happy, Joking, Learning,” Newsday, October 13, 2013.
27. Steven Baer, “The Half-Told Story of Baby Jane Doe,” Columbia Journalism Review, November–
December 1984, pp. 35–38; Mary Tedeschi, “Infanticide and Its Apologists,” Commentary, November
1984, p. 34.
28. Gustafson, “Mongolism, Parental Desires.”
29. C. Everett Koop, “The Slide to Auschwitz,” Whatever Happened to the Human Race? Revell, Old
Tappan, NJ, 1979.
30. Who Should Survive?
31. Kerr, “Legal, Medical Legacy of Case.”
32. Fred Bruning, “The Politics of Life,” MacLean’s, December 12, 1983, p. 17.
33. Ed Lavandera, Josh Rubin, and Greg Botelho, “Texas Judge: Remove Brain-Dead Woman from
Ventilator, Other Machines,” CNN, January 24, 2014.
34. James Rachels, “Active and Passive Euthanasia,” New England Journal of Medicine 292 (January 9,
1975), pp. 78–80.
35. C. Everett Koop, “The Slide to Auschwitz,” in Whatever Happened to the Human Race? Revell, Old
Tappan, NJ, 1979.
36. R. McCormick, “To Save or Let Die: The Dilemma of Modern Medicine,” Journal of the American
Medical Association 229, no. 8 (July 1974), pp. 172–176.
37. Peter Singer, Practical Ethics, Cambridge University Press, New York, 1979, p. 137; H. Tristram
Engelhardt, “Ethical Issues in Aiding the Death of Young Children,” in Marvin Kohl, ed., Beneficent
Euthanasia, Prometheus, Buffalo, NY, 1975; Michael Tooley, “Abortion and Infanticide,” Philosophy
and Public Affairs 2, no. 1 (Fall 1972), pp. 37–65.
38. Robert Weir, Selected Nontreatment of Handicapped Newborns, Oxford University Press, New York,
1984.
39. R. B. Zachary, “Life with Spina Bifida,” British Medical Journal 2 (1977), p. 1461.
40. David Gibson, “Dimensions of Intelligence,” in Down Syndrome: The Psychology of Mongolism, Cam-
bridge University Press, New York, 1978, pp. 35–77; Janet Carr, “The Development of Intelligence,”
in David Lane and Brian Stafford, eds., Current Approaches to Down Syndrome, New York, Praeger,
1985, pp. 167–186.
41. Carr, “The Development of Intelligence.
42. Tom Regan, The Case for Animal Rights, University of California Press, Berkeley, CA, 1985.
43. Mathew Rarey, “Wrongful-birth Lawsuits Put doctors in Ethical Dilemma,” Washington Times,
August 5, 1999, p. A20.
44. “High Court Rules ‘Wrongful Birth’ Suits Invalid,” Atlanta Journal-Constitution, July 7, 1999, p. E1.
45. John Robertson, “Extreme Prematurity and Parental Rights After Baby Doe,” Hastings Center Report
(July/August 2004), p. 33.
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178 Chapter 7 Impaired Babies and the Americans with Disabilities Act
46. Brenda Coleman, “Moral Floodgates Opened by Father Pulling Plug on Son,” Associated Press, May
1, 1989; Gregg Levoy, “Birth Controllers,” Omni, August 1987, p. 31.
47. In the Matter of Baby K, U.S. District Court, E. D. Virginia, July 7, 1993, no. Civ. A. 93-104-A; see
also “The Case of Baby K,” Trends in Health Care, Law, and Ethics 9, no. 1 (Winter 1994), pp. 1–48.
48. Gina Kolata, “Parents of Tiny Infants Find Care Choices Are Not Theirs,” New York Times, Septem-
ber 30, 1991, p. A1.
49. Bill Bartholomene, personal communication, who also read an earlier version of this chapter and
who was a resident at the time and narrated the movie, Who Should Survive? Also, John Freeman,
“On Learning Humility: A Thirty-Year Journey,” Hastings Center Report (May–June 2004), pp. 13–16.
50. A. Gallo, “Spina Bifida: The State of the Art of Medical Management,” Hastings Center Report 14,
no. 1 (February 1984), pp. 10–13.
51. Ibid.
52. Spina Bifida Association, Brief Amicus Curiae of the Spina Bifida Association of America, Weber v. Stony
Brook Hospital, New York State Supreme Court, Appellate Division, 2d Department, New York Law
Journal, October 28, 1983; quoted in Steinbock, “Baby Jane Doe in the Courts,” p. 19.
53. Bob Meadows and Lorna Grisby, “Precious Child, Impossible Choice,” People, May 15, 2006, p. 123.
54. Francis Kamm “What is and What is Not Wrong with Enhancement,” July 7, 2006, KSG Working
Papers, No. RWPOG-20, Harvard-Kennedy School, http://papers.ssrn.com/sol3/papers.cfm?
abstract_id=902372 (accessed December 22, 2013).
55. Anita Silvers, “Rights Are Still Rights: The Case for Disability Rights,” Hastings Center Report
(November/December 2004), pp. 39–40.
56. Amy Yurkanin, “UAB Probably Did Not Cause Injuries to Premature Babies, Judge Rules,” Birming-
ham News, September 10, 2013, http://www.al.com/news/birmingham/index.ssf/2015/09/uab_
study_probably_did_not_cau.html (accessed February 6, 2016).
pen07945_ch07_157-178.indd 178 9/8/16 9:51 AM
http://papers.ssrn.com/sol3/papers.cfm?abstract_id=902372
http://papers.ssrn.com/sol3/papers.cfm?abstract_id=902372
http://www.al.com/news/birmingham/index.ssf/2015/09/uab_study_probably_did_not_cau.html
http://www.al.com/news/birmingham/index.ssf/2015/09/uab_study_probably_did_not_cau.html
This chapter discusses the ethics of using animals in medical research.1 It surveys
philosophical opposition to such research and focuses on the research of Thomas
Gennarelli, who injured primates to model head injuries in humans, and Edward
Taub, who injured primates to study stroke in humans. Publicity about these cases
changed the way American researchers use animals.
THE ANIMAL RESEARCH FRONT AND
GENNARELLI’S RESEARCH
On Memorial Day, 1984, members of the Animal Liberation Front (ALF) quietly entered
the University of Pennsylvania Medical School in Philadelphia, breaking into a vacant
laboratory and stealing 32 audiovisual tapes documenting experiments on primates.
The team who made the tapes worked for neurologist Thomas Gennarelli, who hoped
to produce exact brain damage in adult baboons. According to the New York Times:
One sequence showed a monkey strapped to a table pulling against its bonds. The
animal’s head was encased in a steel cylinder to a pneumatic machine called an
accelerator. Suddenly, a piston drove the cylinder upward, thrusting the animal’s
head sharply through an arc of about 60 degrees.
From 1970 to 1985, or for more than 15 years, Gennarelli had tried, but failed, to
create reproducible head injuries.
The ALF edited 70 hours of tape to a 25-minute piece showing the worst abuses.
People for Ethical Treatment of Animals (PETA) gave the result to Congress and
ABC News. (See “Unnecessary Fuss” on Wikipedia to view it.2)
Researchers claimed they sedated baboons prior to injury and that baboons felt
no pain, but just before the pneumatic hammer smashes their heads, baboons strug-
gled to free themselves, obviously not sedated.
On the tape, the male researchers sound adolescent and macho. As the Times
reporter continues:
C H A P T E R 8
Medical Research on Animals
The Gennarelli and Taub studies on primates
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180 Chapter 8 Medical Research on Animals
… In another sequence, as an animal lay in a coma, a researcher’s recorded voice
was heard saying, “You’d better have some axonal damage, monkey,” and calling
him “sucker.”3
Researchers used profanity and performed unsterile surgery. They held up con-
scious baboons with broken arms and laughed at them. Gennarelli’s defenders claim
these insensitive comments and this behavior resembled gallows humor among
medical residents.
A committee of the National Institutes of Health (NIH) reviewed the tapes. It had
no problem with Gennarelli’s hypothesis: “The research, as proposed,” it said, “is likely
to yield fruitful results for the good of society.”4 Nevertheless, it found Gennarelli guilty
of 9 out of 10 charges: lack of anesthesia, inadequate supervision, poor training, inferior
veterinary care, unnecessary multiple injuries to the same animals, smoking, state-
ments in poor taste around animals, improper clothing, and overall “material failure to
comply with the Public Health Service Animal Welfare Policy.” So the NIH suspended
Gennarelli’s research—the first time it had closed a lab because of abuse of animals.
To ALF, this meant victory. One member of the original ALF team defended
the break-in:
We may seem like radicals to you, but we are like the Abolitionists, who were
regarded as radicals, too. And we hope that 100 years from now, people will look
back on the way animals are treated now with the same horror as we do when we
look back on the slave trade.5
Six weeks after its Memorial Day raid, ALF struck the University of Pennsylva-
nia’s veterinary school, taking three cats, two dogs, and eight pigeons. The dean of
this school said the raid “would set back research efforts, including a study to
determine the cause of sudden infant death syndrome.”6 Another dean said the
stolen cats modeled breathing during sleep, a missing dog had a steel plate inserted
to study osteoarthritis, another dog had been given ear-canal infections to study
cures, and the bones of pigeons had been broken to benefit all birds.7 He said that
the work on dogs would benefit other dogs, adding that such research had to be
done and that more dogs would now need to be used as subjects.
In 1984, ALF struck in California, taking hundreds of small mammals from the
City of Hope National Medical Center in Duarte. They painted inside the lab: “ALF Is
Watching and There’s No Place to Hide!” Ingrid Newkirk of PETA called City of Hope
a “concentration camp” where animals were “being used for painful experiments.”8
The associate director of City of Hope said the theft of these animals had disrupted
$500,000 worth of research on emphysema, cancer, and herpes. ALF had targeted a
study testing tobacco carcinogens in dogs. The dogs were forced to breathe air full of
tobacco smoke, but this model has never been proven to give lung cancer to dogs.
The associate director said 36 dogs, 12 cats, 12 rabbits, 28 mice, and 18 rats
had been stolen and that “we’re concerned that very important research work may
not now be completed.”9
In 1985, the ALF hit the biology and psychology laboratories of the University
of California, Riverside, taking 467 animals, including a stump-tailed macaque
whose eyes had been sewn shut to study a device to help the blind navigate. PETA
said these animals had been used in painful, unnecessary experiments, some involv-
ing starvation. NIH investigated the charges but found no evidence of abuse. The
university claimed $683,000 in damages.
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Chapter 8 Medical Research on Animals 181
In 1987, arson gutted the $2.5 million veterinary research animal lab at the
University of California, Davis; ALF claimed responsibility. In 1988, ALF destroyed a new
building for animal research at the medical school in San Diego and burned down a
veal-packing plant in Oakland. In televised interviews, masked ALF spokespeople took
credit, vowing to continue the attacks “until the killing of the innocent animals stops.”
Also in 1988 in Connecticut, Stephanie Trutt planted a bomb outside a company
that made surgical staples and that used animals to train surgeons in handling them.
She was arrested for attempted murder.10 About this time, the Federal Bureau of
Investigation started to monitor and infiltrate the ALF, listing it as a terrorist group.
Several experiments reviewed by NIH in the 1980s fared poorly. The City of
Hope Medical Center was fined $25,000, lost $1 million in grants, and lost its Animal
Care Assurance, a legal document whereby an institution promises to abide by fed-
eral regulations. After ALF released pictures of poor lab conditions and when inspec-
tors made an unannounced visit, Columbia University lost grants involving
vertebrates.
To prevent further abuses, Congress mandated in 1986 Institutional Animal Care
and Use Committees (IACUCs) for all institutions receiving federal funds for research
on animals. Although IACUCs are composed mostly of researchers themselves, they
force experimenters to justify their projects to fellow scientists. The existence of
IACUCs is directly attributable to the exposure of Gennarelli’s and Taub’s experi-
ments by the ALF and PETA.
Evaluating the Philadelphia Study
Gennarelli can be described as working at the bottom of a pyramid of basic research
on head injury. To him, it seemed obvious that the first step should be to produce
one head injury precisely and reliably, so others could study it. Similarly, knowing
how to produce different kinds of burns in animals is the first step in studying the
physiology of burns and the metabolism of healing.
Activists held that Gennarelli had bashed heads for a decade and gotten nowhere.
They argued that even if he had succeeded in devising a reproducible model of head
injuries, such a model would offer little help in treating these injuries.
Critics said these conclusions papered over a lack of findings. Nedim Buyuk-
michi, an activist and veterinarian, argued that Gennarelli’s studies were too incon-
sistent to result in a reproducible model of head injuries and too limited in scope
to adequately mimic injuries sustained by human victims of accidents: “After
15 years and $11 million to $13 million, essentially nothing has come out of this
research that hasn’t already been known from studies of human head trauma.”11
Defenders also ask: Even if the animals were mistreated and the researchers
were insensitive, does that necessarily affect the scientific value of the research? For
activists, Gennarelli’s treatment of his animal subjects proved that his project was
immoral, but perhaps the two claims should be separated.
PETA AND EDWARD TAUB’S RESEARCH ON MONKEYS
In 1981, Alex Pacheco volunteered in the primate lab of psychologist Edward Taub
in Silver Spring, Maryland. Pacheco told Taub that he wanted to become a research
scientist, but he really wanted to videotape Taub’s research for PETA.12
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182 Chapter 8 Medical Research on Animals
Taub studied “somato sensory deafferentation” in monkeys by surgically cutting
all the nerves in one limb and trying to stimulate regrowth. Based on psychologist
Martin Seligman’s famous idea of learned helplessness, Taub hypothesized that
voluntary nonuse caused some damage in stroke. Each year, stroke disables a
half-million Americans, who often lose the use of a limb.
Pacheco entered the lab late one night and photographed Taub’s experiments.
As a result, authorities charged Taub in Maryland with cruelty to animals, resulting
in drawn-out legal maneuverings in which various research organizations backed
Taub.
Convicted of failing to provide proper veterinary care, a charge based on the
fact that he did not bandage the animals’ wounds, Taub testified that it was better
to leave the wounds unbandaged. Years of experience had convinced him that the
monkeys would only tear the bandages off, making their wounds worse.
Some veterinarians disagreed. In response, the American Psychological Associ-
ation’s Ethics Committee, the NIH, and an ad hoc committee of the American
Physiological Society exonerated Taub of failure to provide good care. After its own
investigation, the psychology department at UAB hired him as a full professor, but
to work only on humans, not animals.
Pacheco’s tactics here raised questions. To obtain evidence for the trial, Pacheco
invited activists such as Donald Barnes, John McArdle, and Michael W. Fox to
search Taub’s lab at night. When warrants were served on Taub, several television
stations recorded the event, while PETA leaders distributed press releases. During
the trial, PETA’s handling of the media was brilliant, and it orchestrated each ele-
ment for maximal impact.
In 1986, the 15 surviving monkeys were transferred to the federally funded
Tulane Regional Primate Center in Covington, Louisiana. In 1990, in an experiment
that PETA opposed, Timothy Pons examined the brain of a dying monkey before
euthanasia. Pons was “flabbergasted” to discover that “the entire patch of the cortex
corresponding to the arm—about half an inch wide—had been rewired to receive
input from the face.” Pons concluded, “The results offer hope that the brain can be
coaxed into rewiring itself after injury.” Data from other monkeys in the study
supported this finding.
Neural rewiring is the Holy Grail in rehabilitative medicine, offering hope to
victims of stroke and spinal cord injury. In 1991, the Story of the Year for ethics in
Discover magazine concluded that four of Taub’s monkeys showed:
… dramatic new evidence of the adult brain’s capacity to “rewire” itself, something
previously thought to be impossible. And ironically, it was PETA’s success at keep-
ing the monkeys away from research for a decade that made the discovery
possible.13
In 2000, Taub achieved a breakthrough, which CNN and ABC News reported
extensively.14 Taub declared that all stroke patients using his Constraint-Induced
Movement Therapy, or CI therapy, had significantly improved in function. For an
affected arm, 30 percent of patients gained close to normal use.15
So can the brain reorganize after a stroke? Some people think that CI therapy
jump-starts self-repair of surviving, healthy cells in the brain or spinal cord. CI
therapy tries to “wake up cells that have been stunned,” says Taub.16 “CI therapy
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Chapter 8 Medical Research on Animals 183
appears to produce a re-wiring in the brain that leads to improved motor function
of the affected limb.”17
In 2004, the NIH funded the first multi-center national trial to study the benefits
of CI.18 In 2006, a placebo-controlled study proved that CI therapy’s benefits lasted
two years after the intervention.19 Taub claimed a separate result showed benefits
five years later. In another study, 21 survivors of stroke underwent the standard CI
therapy, while 21 other survivors merely had a general fitness program. Two weeks
after CI therapy, patients in the treatment group had a “large to very large” improve-
ment using the affected arm, but those in the control group had no change. CI
therapy lasts up to six hours a day, five days a week, is labor-intensive and expensive,
so only a subset of patients have both the money and motivation to gain from it.
In 2015, the Dalai Lama moderated a symposium at UAB honoring Taub’s work
on neuroplasticity, where he hoped his presence bridged the gap between religion
and science.
The Law and Animal Research
In 1992, the Farm and Animal Research Facilities Protection Act made it a federal
crime to break into a research facility or the premises of a company that breeds
research animals. Violators face prison sentences up to one year for illegal entry
and fines up to $5,000. A vice-president at UAB Medical Center, which had origi-
nated the bill, hoped this legislation would protect scientists against “activists who
use terrorist techniques to interfere with potentially life-saving research.”20
In 1993, animal rights activists won a significant victory for dogs and primates
used in laboratory research. Judge Charles Richey ordered the Agriculture Depart-
ment to enforce the Improved Standards for Laboratory Animals Act of 1985, the
act creating IACUCs. The judge concluded that the Agriculture Department had
violated the act by giving all power to interpret it to local IACUCs. He implied that
IACUC members, including veterinarians and one nonscientist member, too often
protected their own institutions.
Richey criticized the government for taking nine years to implement its own
rules and implied that some of the rules increased profitability more than protected
animals.
Richey later affirmed the gradient and rejected the claim by Ingrid Newkirk of
PETA that “a rat is a pig is a dog is a boy.” He dismissed claims that American research-
ers had to keep detailed records for their 21 million rats and mice, affirming that
researchers could treat rats and mice differently from dogs and primates. Rats and
mice constitute 87 percent of animals used in research.21
Animal activists disdain IACUCs as window dressing and mock the Department
of Agriculture, which inspects labs, as subservient to agribusiness. Veterinarians on
IACUCs are caught in the middle, charged with protecting animals but salaried by
researchers.
During the 1980s, faced with devastating losses in public confidence, scientists
established the Foundation for Biomedical Research, a lobby for 350 universities,
drug companies, manufacturers of medical devices, and commercial animal-supply
companies. Its lobbyists counter PETA’s lobbyists. It also funds a paid member in
most states to work with students in high schools and colleges.
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184 Chapter 8 Medical Research on Animals
Numbers and Kinds of Animals in Research
Animal rights activists made two tests controversial: the LD-50 tests and Draize
tests. LD stands for “lethal dosage.” LD-50 tests determine what amount of a sub-
stance will kill 50 of 100 animals. Done routinely across species for substances
ranging from soap to chemotherapies, these tests have been criticized as crude
measures (one witness said they tell mice how much of something to take for mass
suicide). Because of criticisms, since the early 1970s, use of LD-50s declined 96 per-
cent and has been replaced by LD-10s.22
The Draize test estimates whether products irritate human eyes. Samples are
dripped into rabbits’ eyes, which are particularly sensitive. Activists seek alternative
tests using cell cultures and computer models.
Over the past decades, activists and researchers agreed on the 3R’s, made
famous by researcher Barbara Orlans, of replacement, refinement, and reduction.
Replacement means using tissue culture instead of animal skin or a mouse instead
of a dog. Refinement means improving the quality of life of research animals, as well
as the methodology. Reduction means reducing the number of animals used, for
example, LD-10s rather than LD-50s.
As of 2010, the European Union banned use of animals to test cosmetics, ban-
ning the Draize test. Instead, blush or eyeliner made by L’Oréal is tested on artificial
human skin called EpiSkin and EpiDerm (the same skin grown for burn victims
from a sample of their own skin).23
The Foundation for Biomedical Research claims that “many people think that
abandoned or stolen pets are used in research. This is completely untrue and is
banned in this country.”24 However, a 2009 report by the National Academies of
Science implied that, even though demand has declined and that the system should
be phased out, some “Class B” dealers have previously been selling “random source”
dogs and cats to researchers.25
Activists claim that researchers use a vast number of animals in research, with
estimates in the past from 14 to 71 million.26 Because of the 3R’s, the Foundation
for Biomedical Research claims that the number dropped from 5,500,000 in the
1970s to 2,500,000 today.
Whatever number is correct, basic research uses far more animals than people
realize. For every practical success in human medicine, such as cyclosporin or knee
replacements, dozens of failures occur in studies with human subjects and dozens
of failures occur in animal studies. To arrive at each success, the sad truth is that
researchers use millions of animals each year.
Descartes on Animal Pain
Since prehistoric times, humans have used animals for many purposes, but exper-
imentation on animals did not arise as a specific issue until the beginning of mod-
ern science. In the seventeenth century, René Descartes set the premises for the
modern debate.
Not only a mathematician and philosopher, Descartes also studied physiology
and the circulation of blood by dissecting live animals without anesthesia (which
was not discovered until 1846). To understand why he considered that permissible,
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Chapter 8 Medical Research on Animals 185
it is necessary to understand his basic philosophical approach, Cartesianism, which
deeply influenced Western science and philosophy.
Descartes is known for his famous argument Cogito ergo sum: “I think, therefore
I am.” For him, what distinguishes human beings from other animals is res cogitans,
or “thinking stuff,” a substantial mind or soul. For Descartes, this mental substance
held together transient mental states such as perceptions, feelings, thoughts, and
dreams and served as a ground for free will, reason, and moral values. Nonhuman
animals, Descartes believed, lack res cogitans, mind or soul, and are therefore ulti-
mately only res extensa, or “extended, physical stuff.” Thus, in Cartesian philosophy,
animals were merely fleshy machines; their eyes reflected no soul and no pain lay
behind their external “pain behavior.”
Descartes’s idea that animals lack a soul was not unique as this was also Chris-
tian doctrine. Descartes accepted Christian teaching that humans have souls created
by God, whereas animals do not. Descartes assumed further that soul is identical to
mind, so if animals have no soul, neither do they have a mind; and if animals have
no mind, they are not conscious; and if they are not conscious, they cannot feel pain.
For Descartes, in order to feel pain, a mind is needed, and—to repeat—only
human beings have minds. In Descartes’s view, no middle ground exists between
a human being, who has a soul and a capacity to experience pain, and an animal
that has no soul and no capacity to experience pain.
Cartesianism attempts to heal the tension between science and religion by
demarcating proper areas for each: Science is study of matter, mathematics, ani-
mals, and the human body; religion and humanities are the study of mind, art, and
ethics. Obviously, however, it has not come to represent a consensus, or even a
widely accepted solution—even for Christians, who still struggle to understand how
mind and soul interact and whether animals count in the grand scheme of things.
Among Descartes’s followers were an infamous group of early physiologists and
vivisectionists (researchers operating on live animals without anesthesia) at the Jan-
senist seminary of Port Royal. Here is how eighteenth-century writer Nicholas Fon-
taine describes them:
They administered beatings to dogs with perfect indifference, and made fun of those
who pitied the creatures as if they felt pain. They said the animals were clocks; that
the cries they emitted when struck were only the noise of a little spring that had
been touched, but that the whole body was without feeling. They nailed poor ani-
mals up on boards by their four paws to vivisect them and see the circulation of
the blood that was a great subject of conversation.27
To some extent, the Cartesian concept of animals lasted into modern times.
Some behavioral psychologists argued against assuming rats were conscious and
drew a distinction between “pain behavior” and the experience of pain. Rats and
chickens, they said, exhibited “pain behavior,” but whether they had mental states
and thus had an experience of pain like humans was another matter.
C. S. Lewis on Animal Pain
The twentieth-century Christian writer C. S. Lewis tried to find a middle ground
between the Cartesian view and a view equating animal and human pain. Lewis
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186 Chapter 8 Medical Research on Animals
rejected the view that animals feel nothing. Lewis distinguished between sentience
(the ability to feel pain) and consciousness (awareness of feeling pain). All mammals
are sentient, he argued, but only humans are self-conscious.28
According to Lewis, animals feel pain but not as humans do. A rat receiving
three electric shocks feels the pain of each shock—the rat is sentient—but it does not
think, “I have had three shocks.” The thought, “I have had three shocks,” requires
what Lewis calls “consciousness or soul.”
Lewis agreed with the eighteenth-century philosopher David Hume, who argued
that self-identity requires a permanent self or mental substance that unites all of a
person’s thoughts as “his” or “hers.”29 For Lewis, a baboon would have a “succession
of perceptions” but not the human experience of pain as “my pain.”
Lewis identified consciousness with self-consciousness or soul (for which he
also used the term “deep self”). Some critics have disagreed with this idea, partic-
ularly since Lewis assumed that memory depends on self-consciousness. These crit-
ics observe that if memory required self-consciousness, animals would never
remember anything, and studies of learning in animals would be senseless. But
everyone knows that animals remember—a dog who has been given a treat by a
drive-through window remembers that experience.
Philosophy of Mind and Ethics
Consider the questions of how much pain animals feel and whether their pain is
like ours. On the ladder of evolution from an amoeba to baboons, when do organ-
isms become sentient? When can an animal remember pain as “my” pain?
These are not simple questions. They raise some of the deepest problems in phi-
losophy of mind and lie behind many controversies about the ethics of animal research.
Moreover, when we consider various answers to such questions, do we, as a
species, have a conflict of interest? Do we have any bias toward accepting some
answers and rejecting others? Remember that for centuries, societies considered
people of color and women to be “obviously” and “naturally” inferior to white men.
Finally, even if animals are not aware of pain or do not remember pain as
humans do, that does not mean they suffer less in medical experiments. When
humans consent to be subjects of medical experimentations, we explain to them
the purposes and risks of the study, so they understand the experiment. This does
not occur with animals, who have no idea why they are being used, so they may
suffer more.
In discussing abortion and end-of-life care, we explored the gradient theory of
personhood. On a cross-species gradient of characteristics of persons, adult baboons
will possess more characteristics than newborn humans or profoundly brain-injured
humans. On this gradient, adult baboons will be more persons than human embryos
or end-stage vegetative humans. This explains why the use of chimpanzees, gorillas,
and baboons in research troubles so many.
Peter Singer on Speciesism
Before 1975, groups promoting animal welfare focused on humane treatment of
research animals. In that year, Australian philosopher Peter Singer published Animal
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Chapter 8 Medical Research on Animals 187
Liberation, arguing that animals should count for something in ethics.30 To say
animals do not count because they are inferior by nature, Singer held, is like saying
slaves or women do not count because they are inferior by nature. Just as racism
and sexism are evil, Singer said, so is speciesism.
According to him, the argument that supports equal rights for minorities and
women also supports animal rights. If our moral concern for children, women, and
minorities stems from their sensitivity to pain, family ties, and ability to reason,
why wouldn’t these factors extend our moral concern for animals?
Note that we treat humans with equal human rights despite the obvious fact that
they are unequal in ability to suffer, in intelligence, in strength, and in character.
Inequality of ability does not dictate inequality of treatment. Such arguments put spe-
ciesists on the defensive: If the principle of equality applies to all people, despite their
obvious differences in ability and intelligence, why should it not apply to animals?
Singer emphasized how pigs are more intelligent than horses, dogs, and cats,
which we revere as pets. Pigs suffer the sad quirk of fate that humans like the taste
of their smoked, cooked flesh—a fact less true of deer, buffalo, and bison. Singer
explained how farmer-businessmen raise pigs, veal calves, and chickens in small,
confining cages in industrial-type farms. Singer argued that current factory farming
is evil. Billions of animals suffer and die each year so humans can enjoy their flesh.
Arguably, vegetarian eating is healthier for humans today than a meat-centered diet
and, in addition, saves animals much pain.
Singer also argued that a medical experiment using animal subjects must be
speciesist, unless humans would be willing to substitute irreversibly comatose human
subjects. This is an interesting approach. Most people who accept the idea of using,
say, a chimpanzee in medical research would cringe at the idea of using an anen-
cephalic baby (an infant born lacking a normal brain). But if the chimpanzee is
active, gregarious, sensitive, and responsive, whereas the anencephalic baby is
hopelessly mute, comatose, and dying, why should the chimp be the victim? If the
answer is simply that the baby is human and the chimp nonhuman, that answer is
mistaken because it assumes what it must prove; in other words, it’s speciesist.
Let us put the point differently. Suppose an institution exists with hundreds of
profoundly mentally challenged human children and adults who have been aban-
doned by their families to the state. They are so profoundly challenged mentally as
to have virtually no recognizably human interactions with each other or the staff.
Even so, most people would oppose if a drug company was using them as subjects
to test promising drugs for toxicity in humans.
Now move to a large center for primates, such as one near San Antonio, Texas,
that holds hundreds of chimpanzees and baboons. These primates are more social,
interactive, and intelligent than the humans just described. Yet these are precisely
the beings drug companies use to test new drugs for toxicity. Why do we tolerate
such testing on them and not on the mentally challenged humans?
In addition to his argument about speciesism, Singer also used utilitarian rea-
soning. According to utilitarian ethical theory, right acts produce the greatest good
for the greatest number; for instance, research on presently sick patients is right if
it helps a greater number of future sick patients.
Singer maintains that stipulating that the “greatest number” must refer only to
humans begs the key question. Once animals count for something, however small,
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188 Chapter 8 Medical Research on Animals
in utilitarian reasoning, then radical conclusions follow. Experiments that inflict
horrible pain on many animals cannot be justified on the grounds that they save a
few human lives, because the number of animals suffering outweighs the small good
to humans. Suppose a mouse’s suffering counts 1/1000th of a human’s suffering
and that it takes painful experiments on 50,000 mice to ameliorate the suffering of
one adult with psoriasis. In that equation, the research would not be justified.
Yale philosopher Shelly Kagan pointed out that Singer often argued “a utilitar-
ian view without limiting itself to utilitarianism.”31 That accurately sums up Animal
Liberation, where Singer graphically described the many ways that animals suffer in
vast, industrialized hog factories to become tasty flesh for humans.
Tom Regan on Animal Rights
Underlying the controversy over Gennarelli’s experimentation on primates is a more
basic issue: whether scientific research on animals is ever justified. Tom Regan, an
American philosopher and animal rights activist, thinks not:
I argue that the whole system of animal experimentation [and] the whole system
of commercial and sport trapping and hunting are morally bankrupt institutions.
The only way you change these things fundamentally is by eliminating them—in
much the same way as with slavery and child labor.32
Regan argues that human beings have rights because they have a life. That is,
humans have lives that can go better or worse for them, and this is true for each
human being independently of whether or not others value him or her. In other
words, people have inherent, not instrumental, value. Where Singer loosely applied
utilitarianism to animals, Regan loosely applied Kantian ethics to animals, asserting
the idea that each animal should be treated as an “end in itself.”
Regan condemns research on animals, because it treats them as a means to the
end of helping humans. For Regan, animals have rights not to suffer at the hands
of humans, rights to be respected in their own habitat, and rights to enjoy a natural
lifespan. So eating them is also immoral. In other words, each animal’s life has
inherent value.
Once the premise is accepted that each animal’s life has inherent value, it fol-
lows that medical research to benefit humans is unjustified. For if a life has inherent
value, no competing value trumps it.
Regan maintains that like humans, many species of animals have lives that can
go better or worse for them, and he draws this crucial inference, “They too have a
distinctive kind of value in their own right, if we do; therefore, they too have a right
not to be treated in ways that fail to respect this value.”33 If humans count in the
moral calculus because they possess a quality, and if animals possess the same
quality, then it is inconsistent not to count animals equally.
Regan’s critics say that his argument runs several unjustified inferences together.
First, they ask, if any being (human or nonhuman) has a life that can go better or worse,
does that fact give every life an inherent value? Second, and more important, just
because an animal “has a life,” that doesn’t mean it is equal in value to that of humans.
Note, however, that Regan includes a qualification: He says that animals (like
humans) have lives that can go better or worse for them. By qualifying his claim this
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Chapter 8 Medical Research on Animals 189
way, no comparison is possible between human and animal lives. If fish in an
aquarium “have a life” that can go better or worse for them, from that standpoint,
we do not have a right to destroy them.
Consider the Lifeboat Test: Only a dog or a man can remain in a lifeboat. Which
should survive? Regan implies that because “animals aren’t there to be used as our
resources,” it is wrong to kill the dog to save the man, and scientist Charles McArdle
concurs, “I would seriously have to question whether I would allow an animal to
die just to protect me.”34 On the other hand, pediatric researcher Carolyn Compton
disagrees, “I love animals, but there’s no question in my mind that if I were able
to sacrifice an animal life to save a human being, I would do it.”35
The philosopher Carl Cohen says, “Rights arise, and can be intelligently
defended, only among beings who do, or can, make moral claims against one
another.”36 For Cohen, because animals cannot make claims, they lack rights.
But this seems to assume that claims can be made only with vocal cords. When
a dog pesters his owner to be taken for his daily walk, isn’t he making a claim on
his owner? What about minimally conscious patients who can’t interact but are still
aware?
Cohen rejects the analogy among racism, sexism, and speciesism: Although
racism and sexism are bad, speciesism is not. “Speciesism is not merely plausible;
it is essential for right conduct, because those who will not make the morally rele-
vant distinctions among species are almost certain, in consequence, to misappre-
hend their true obligations.” That is, they will take the dog from the burning
building, not the child; give money in their wills to ensure that their pets are taken
care of, but ignore their nephews and nieces; and support the Humane Society but
not famine relief.
Why We Need Animals in Research: The Official View
According to the Official View, which federal law expresses, drugs must first be
tested on animals to screen for toxicity and to indicate possible benefit to humans.
Sometimes this view approaches religious fervor: “Every major medical advance of
the century has depended on animal research,” says a neuroscientist from Rutgers
University.37
Since 1907, researchers have used mice for many reasons, including their small
size, easiness to care for and breed, and genomic similarities with humans. For
cancer research, mouse models have yielded extensive knowledge of the pathogen-
esis of different cancers, potential treatment for cancer, and the genetic background
of cancers.38 For example, scientists use mice to test extract of grapes to prevent
cancer and also give mice cancer in order to test anticancer drugs.
Researchers studying the hepatitis C virus always use chimpanzees, because
“HCV infects only humans and chimpanzees, using specialized molecules found in
these organisms to establish infection.”39 Although mouse models are being studied,
researchers studying HCV at present need to continue using chimpanzees.
As an NIH report concluded, “No single set of results from a particular model—
whether animal, cell, or computer—can predict exactly what will happen, so research-
ers often ask the same questions in different kinds of studies. When different
models yield similar results, the results are much more believable.”40
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190 Chapter 8 Medical Research on Animals
In Phase I of testing drugs on humans, scientists strive to see how much of the
drug can be given without producing toxic effects. Phase I is done only after exten-
sive testing of the drug in animals. Without such testing, the Official View claims,
many more toxic reactions would occur in humans.
The Official View argues similarly for how scientists test new heart pumps, arti-
ficial pumps, salves for burns, antibiotics, and new kinds of surgery. If they did not
test these first on animals, making their mistakes and gaining skill, more humans
would be injured or harmed.
If no animals were available, such tests would need to be done on humans. It
is inconceivable that humans would be given cancer to have subjects to test anti
cancer drugs, so progress against cancer would slow.
As evolution teaches, humans evolved through primates from even lesser ani-
mals. As such, we share nervous systems, receptors for pain, and fight-or-flight
reactions with our predecessors. Moreover, it is precisely because of sharing so
much with primates and mammals that the latter make such good subjects for
medical research: They predict well how drugs and surgeries will work in humans.
Finally, the Official View emphasizes Taub’s research. Condemned originally as
cruel, Taub’s studies led to his breakthrough and stroke victims now benefit.
In sum, on the Official View, if we want medical research to continue, using
animals in research is indispensable and also reduces harm to humans from medical
research.
Critiquing the Official View
For too long, the Official View has not been challenged in medicine or science, but
it is time to do so. Three different critiques of it can be made.
1. Inherently wrong. The most basic criticism of the Official View is that the inflic-
tion of pain on animals is inherently wrong, that just as we should not experi-
ment on some humans to help the majority, so we should not harm animals to
benefit humans. This argument assumes equivalence that animal and human
suffering are equivalent and that one should not be accepted to advance the
other.
Many people reject equivalence, believing that animals, compared to
humans, are of either no moral value or inconsequential moral value. Others
may believe that, although animals count for something, human welfare counts
for so much more that animal suffering in research can be allowed.
2. Bad science. Some scientists think that the Official View is based on bad science.
This objection has two parts: first, testing drugs, devices, and techniques on
animals does not in fact predict harm to humans; second, some drugs, devices
and techniques that harm animals may help humans, but are screened out, thus
potentially beneficial tools are lost due to testing on animals. So testing these
things on animals is both too broad and too narrow: It allows too many bad
things to go through and wrongly screens out too many good things.
Philosopher of science Niall Shanks and anesthesiologist Ray Greek studied
whether testing of drugs on animals predicts their toxicity or benefits to humans
and concluded that most extrapolations rest on shaky grounds:
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Chapter 8 Medical Research on Animals 191
Drugs such as Practolol, Opren, Fialuridine, Clioquinol, Zelmid, Troglitazone,
and others (such as Avandia), came to market, in part, because they tested safe
in some animal species. They went on to prove dangerous in humans. It is still
difficult to induce lung cancer in animals from cigarette smoke. Animals that
were fed a high fat, high cholesterol diet failed to develop coronary artery
disease, and so this diet was thought safe for humans. Asbestos, benzine, glass
fibers, and other environmental poisons were all proved “safe” in animals and
consequently kept on the market long after epidemiological data proved them
carcinogenic or otherwise dangerous.
From 1976 to 1985, 209 new drugs were approved for use in the United
States after extensive animal testing. … Of these, 198 were followed … by the
FDA and 102, or 52 percent were either withdrawn or relabeled as having sec-
ondary to severe unpredicted side effects such as lethal dysrhythmias, heart
attacks, kidney failure, and stroke.41
Such recalls make one question, whether responses of drugs in animals
predict responses of the same drugs in humans. Testing drugs on embryonic
cells might be preferable and both save suffering in animals and prevent harm
to adult humans.
What about Taub’s study? Well, notice that Taub made his advance with
humans only after he was banned from experimenting on primates (a condition
of his hiring at UAB). What if he had directly tried to help humans overcome
stroke? Were the animal studies necessary? One could argue that, if he had
been blocked from using animals, he could have gone directly to using humans
and more quickly have discovered his breakthrough.
What about evolution? Doesn’t our common genetic history mean that
drugs tested on nonhuman mammals will be likely to predict their effects on
humans? Yes and no. Although we share 98 percent of our genes with apes and
baboons, we also have many variations in the human genome, such that some
drugs that work well in Caucasians do not work well in African-Americans.
Similarly, the variations between nonhuman primates and human primates
mean there are many gaps in predictive drug testing.
Also, if we are 98 percent the same genetically as apes, shouldn’t we regard
apes as 98 percent persons? As such, shouldn’t they have rights not to be kept
in cages or to be used against their wills in research?
Another problem is that many labs use mice or rats or primates bred to be
a uniform type. In that way, the results are more easily reproducible by other
scientists. But using only one genetic strain of mouse also limits testing of a
new drug to that strain, whereas using many kinds of mice and animals would
better mimic the variation in humans.
3. Cost/benefit. Most people do not understand how many animals scientists use
in research or how much these animals suffer. If the benefits of using animals
to screen drugs and devices are questionable, and if good arguments can be
made that we should directly test human embryos or human volunteers, then
using vast numbers of animals in research is morally unjustifiable.
So the argument is not whether a specific cost/benefit ratio is justified, but
whether the meager, overall results for humans justify the immense suffering
to millions of research animals. It is a bad argument to claim, as researchers
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192 Chapter 8 Medical Research on Animals
often do, that any benefit to humans justifies this project, for that is tantamount
to assuming that the welfare of animals doesn’t count in the calculation, that
is, a small benefit to one human with a rare disease doesn’t justify torturing a
million pigs.
Chimpanzees and Research
In the twenty-first century, use of chimps in research became the flashpoint of
activism for animal rights. Two things propelled this: the dismal failure of chimps
to model HIV in humans and the rise of neuroscience, with a huge increase in basic
research on chimps and monkeys. Pharmaceutical companies funded some of this
research, but critics questioned whether anything like schizophrenia or Alzheimer’s
could be induced in primates or realistically studied with them. Neuroscience
researchers such as Lawrence Hansen disputed whether decades of research with
chimps had produced any significant results at all.42
The two largest collections of chimpanzees are a holding ground used in research
outside San Antonio, Texas, and a retirement sanctuary northwest of New Orleans
in Louisiana. The Humane Society of the United States joined Jane Goodall to push
Congress to join all other developed countries in the world in banning research on
chimpanzees. These groups wanted NIH to move all chimps to Louisiana. They all
championed the Great Ape Protection and Cost Savings Act in Congress, sponsored
by Roscoe Bartlett, a congressmen and former Navy physiologist who once subjected
chimps to painful tests for manned space travel and now regrets doing so.43
The Great Ape Project, sponsored by Jane Goodall, Peter Singer, and others,
urges that apes, chimpanzees, bonobos, gorillas, and orangutans be given rights not
to be killed, tortured, or imprisoned. In 2016, over 3,000 of the above were in cap-
tivity in America, with over 1,000 in biomedical research facilities. Responding in
part to Goodall’s efforts, in April 2013, Harvard University announced it would
close its New England Primate Research Center (NEPRC) in Southborough by 2015.
In June 2013, Francis Collins, head of the NIH, announced that 300 of the 360
chimpanzees that NIH owned would be retired to sanctuaries.
Europe now bans use of apes or chimpanzees in research. Since 1900, the
world’s population of chimpanzees has dropped from 1.3 million to 0.3 million, such
that America now lists them as an endangered species. As such, a special federal
permit is now required to import any chimp for medical studies.44
In New York, a lawsuit failed its first test that asked for chimpanzees to be
treated as legal persons, such that they could not be falsely imprisoned in cages. If
the lawsuit had been successful, four chimpanzees held in New York would have
been transferred to wildlife sanctuaries.45
FURTHER READING
Deborah Blum, The Monkey Wars, New York: Oxford University Press, 1994.
Peter Carruthers, The Animals Issue: Moral Theory in Practice, New York: Cambridge University
Press, 1992.
Gary Francione, Introduction to Animal Rights: Your Child or the Dog? Philadelphia, PA: Temple
University Press, 2000.
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Chapter 8 Medical Research on Animals 193
R. G. Frey, Rights, Killing, and Suffering, Oxford, England: Basil Blackwell, 1983.
Jean Swingle Greek and Ray Greek, What Will We Do If We Don’t Experiment on Animals?
Bloomington, IN: Trafford Publishing, 2004.
Tibor Machan, Putting Humans First, Lanham, MD: Rowman & Littlefield, 2004.
F. Barbara Orlans, In The Name of Science: Issues in Responsible Animal Experimentation,
New York: Oxford University Press, 1993.
James Rachels, Created from Animals, New York: Oxford University Press, 1990.
Denise Radner and Michael Radner, Animal Consciousness, Buffalo, NY: Prometheus Books,
1989.
Tom Regan, The Case for Animal Rights, Berkeley, CA: University of California Press, 1983.
Peter Singer, Animal Liberation: The Definitive Classic of the Animal Rights Movement, New York:
Harper, 2009.
Susan Sperling, Animal Liberators, Berkeley, CA: University of California Press, 1988.
DISCUSSION QUESTIONS
1. If someone is against all use of animals in medical research, should he or she
refrain from using medicines or products tested for safety on animals? Slaves
built the White House. Should American presidents therefore refuse to live in
it? Are the arguments properly analogous?
2. “I agree that animals suffer in being raised for my food, but I don’t care. I enjoy
eating bacon, barbecue, and ham, and I will never change.” Does this person
commit any mistake of reasoning in admitting that he doesn’t care enough
about suffering of animals raised for his food to become a vegetarian?
3. “I’d rather be your pet than your fetus.” Do people concerned with animal rights
too often discount the suffering of fetuses in abortion? Shouldn’t pro-life people
be against both kinds of suffering?
4. What about the dog and the man in the lifeboat? If only one can stay, should
we draw straws to see who goes overboard? (And don’t keep the dog to eat him!)
5. Would it be acceptable for humans to volunteer to spare animals? Could we imag-
ine a scenario where, if enough humans volunteered to test, say, new vitamins,
no animals at all would need to be used in testing?
6. Is Cohen right: if there is a stranger’s baby and your family dog in a burning
house, and you can only save one, are you a bad person if you save the dog?
NOTES
1. In this chapter, “animals” refer to “nonhuman animals.”
2. http://en.wikipedia.org/wiki/Unnecessary_Fuss.
3. Quoted from the tape by W. Robbins, “Animal Rights: A Growing Movement in the U.S.,” New York
Times, June 15, 1984, p. A16.
4. Evaluation of Experimental Procedures Conducted at the University of Pennsylvania Experimental Head –
Injury Laboratory 1981–1984 in Light of the Public Health Science Animal Welfare Policy, Office for
Protection of Research Risks, National Institutes of Health, 1985, p. 37.
5. Robbins, “Animal Rights.”
6. Robert Marshak, quoted in New York Times, July 29, 1984, p. A12.
7. Donald Abt, quoted in New York Times, August 12, 1984, p. B1.
pen07945_ch08_179-195.indd 193 9/8/16 9:51 AM
http://en.wikipedia.org/wiki/Unnecessary_Fuss
194 Chapter 8 Medical Research on Animals
8. New York Times, December 10, 1984, p. A10.
9. Ibid.
10. “Of Pain and Progress,” Newsweek, December 26, 1988, p. 53.
11. Quoted in J. Duschek, “Protestors Prompt Halt in Animal Research,” Science News, July 27, 1985,
p. 53.
12. Edward Taub, “The Silver Spring Monkey Incident: The Untold Story,” Coalition for Animals and
Animal Research Newsletter, 4, no. 1 (Winter–Spring 1991), pp. 1–8.
13. Tony Dajer, “Monkeying with the Brain,” Discover, January 1992, pp. 70–71. See also Warren
E. Leary, “Sharp Brain Healing Found in Disputed Monkey Tests,” New York Times, June 28, 1991,
p. A9.
14. Joachim Liepert, Heike Bauder, Wolfgang H. R. Miltner, Edward Taub, and Cornelius Weiller,
“Treatment-Induced Cortical Reorganization after Stroke in Humans,” Stroke: The Journal of the
American Heart Association, 31 (June 2000), pp. 1210–1216.
15. Edward Taub, Topics in Stroke Rehabilitation 3, July 1999, pp. 38–61; “Constraint-Induced Movement
Therapy: A New Family of Techniques,” Journal of Rehabilitation Research and Development 36, no. 3
(July 1999).
16. Sandra Blakeslee, “Pushing Injured Brains and Spinal Cords to New Paths,” New York Times, August
28, 2001, p. D6.
17. “Stroke Rehab Therapy Shows Benefits in 2-year Follow-up,” UAB Reporter, April 12, 2006.
18. “Taub Wins American Psychological Association Scientific Award,” UAB Synopsis, February 16, 2004.
19. Edward Taub, Gitendra Uswatte, Danna Kay King, David Morris, Jean E. Crago, and Anjan Chat-
terjee, “A Placebo-Controlled Trial of Constraint-Induced Movement Therapy for Upper Extremity
After Stroke,” Stroke: The Journal of the American Heart Association, 37 (April 2006), pp. 1045–1049.
20. John Durant, quoted in John Hargrove, “Bush Signs Heflin Bill to Protect Researchers,” Birmingham
Post-Herald, August 28, 1992.
21. “Questions and Answers about Use of Animals in Research,” Humane Society of United States,
http://www.humanesociety.org/issues/biomedical_research/qa/questions_answers.html?referrer=
https://www.google.com/
22. Bernard Rollins, Animal Rights and Human Morality, Prometheus, Buffalo, NY, 1981, pp. 97–99.
23. D. Carvajal, “A New Science, at First Blush,” New York Times, November 20, 2007, p. C1, 4.
24. “Facts and Myths” about Use of Animals in Research, Foundation for Biomedical Research, https://
fbresearch.org/biomedical-research/animal-testing-facts/
25. Press Release, National Academies of Science, May 29, 2009, http://www8.nationalacademies.org/
onpinews/newsitem.aspx?RecordID=12641.
26. Office of Technology Assessment, Animal Usage in the United States, Superintendent of Documents,
Washington, D.C., 1986, p. 12; Newsweek, December 26, 1988, p. 51; Andrew Rowan, Of Mice,
Models, and Men: A Critical Evaluation of Animal Research, State University of New York Press,
Albany, NY, 1984, pp. 67–70.
27. Nicholas Fontaine, Memoires pour servir Ö l’histoire de Port-Royal, vol. 2, originally published in
Cologne in 1738; quoted in L. Rosenfield, From Best-Machine to Man-Machine: The Theme of Animal
Soul in French Letters from Descartes to La Mettrie, Oxford University Press, New York, 1940,
pp. 52–53; also quoted in Peter Singer, “Animal Liberation,” New York Review of Books, 1975.
28. C. S. Lewis, How Human Suffering Raises Almost Intolerable Intellectual Problems, Macmillan, New York,
1940, pp. 131–133.
29. David Hume, A Treatise of Human Nature, 1789, Dover Publications, Mineola, NY, 2003 ed.
30. Singer, “Animal Liberation,” New York, NY.
31. Shelly Kagan, quoted in Mark Oppenheimer, “Who Lives? Who Dies? The Utility of Peter Singer,”
Christian Century, July 3–10, 2002, p. 25.
32. Quoted in S. Isen, “Laying the Foundation for Animal Rights: Interview with Tom Regan,” Animals
Agenda, July–August 1984, pp. 4–5.
33. Tom Regan, The Case for Animal Rights, University of California Press, Berkeley, CA, 1983.
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www.google.com/
http://www.humanesociety.org/issues/biomedical_research/qa/questions_answers.html?referrer=https
http://www.humanesociety.org/issues/biomedical_research/qa/questions_answers.html?referrer=https
http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12641
http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12641
Chapter 8 Medical Research on Animals 195
34. Quoted in “Animals in the Middle,” in the television series Innovation, sponsored by Johnson and
Johnson on the A & E Network, September 5, 1987.
35. Ibid.
36. Carl Cohen, “The Case for Animal Rights,” New England Journal of Medicine 315, no. 14 (October 4,
1986), pp. 865–870.
37. Wise Young, quoted by Niall Shank, Ray Greek, Nathan Nobis, and Jean Swingle-Greek, “Animals and
Medicine: Do Animal Experiments Predict Human Responses?” The Skeptic 13, no. 3 (2007), p. 1.
38. http://emice.nci.nih.gov/aam/mouse/how-and-why-mouse-cancer-models-are-used.
39. http://www.nature.com/news/2011/110608/full/news.2011.356.html.
40. http://science.education.nih.gov/animalresearchfs06 .
41. Shank et al., “Animals and Medicine.”
42. Lawrence Hansen, “Noxious Groupthink,” Chronicle of Higher Education, November 12, 2010,
pp. B6–7.
43. Roscoe Bartlett, “Stop Using Chimps as Guinea Pigs,” New York Times, August 10, 2011.
44. “Captive Chimps Get Federal Protection,” Washington Post, June 14, 2015.
45. Kevin Conlon, “Chimpanzee Personhood Effort Fails First Legal Tests in New York,” CNN, Decem-
ber 10, 2013.
pen07945_ch08_179-195.indd 195 9/8/16 9:51 AM
http://emice.nci.nih.gov/aam/mouse/how-and-why-mouse-cancer-models-are-used
http://www.nature.com/news/2011/110608/full/news.2011.356.html
http://science.education.nih.gov/animalresearchfs06
This chapter describes ethical problems of medical research on vulnerable humans,
starting with an historical review of medical experimentation by Nazi physicians and
secret American medical research. Its major topics are the Tuskegee Study of untreated
syphilis in Alabama and later studies in Africa to prevent mother-to-child transmis-
sion of HIV. The chapter also discusses financial conflicts in research, especially with
research sponsored by pharmaceutical companies. It also discusses medical research
in vulnerable populations in developing countries, including a controversial experi-
ment in neuroscience on Romanian orphans, the Bucharest Early Intervention Pro-
ject. It also discusses the Krieger Lead Paint Study and the Jesse Gelsinger case.
INFAMOUS MEDICAL EXPERIMENTS
William Beaumont
In 1822, physician William Beaumont, the father of gastric physiology, treated
patient St. Martin for a bullet wound in the stomach; St. Martin survived, but the
wound healed strangely, leaving a hole. Beaumont then employed St. Martin as a
servant and proved the previously unknown fact that stomach juices digest food.
St. Martin ran away and Beaumont had him caught to continue to exhibit him.
Hospitals today in Texas and Michigan bear Beaumont’s name.
Nazi Medical Research
Besides participating in the Holocaust, physicians during the Nazi regime conducted
heinous experiments. They reasoned that if victims in concentration camps were
going to die anyway, why not use them to benefit medical science?
From 1943 to 1945, gay men, convicted criminals, Russian officers, Polish dis-
sidents, Jews, and gypsies on Ward 46 at Buchenwald in Germany got experimental
C H A P T E R 9
Medical Research on Vulnerable
Populations
Tuskegee, Krieger lead-paint, HIV Vertical Transmission
in Africa, Bucharest Early Intervention Studies
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Chapter 9 Medical Research on Vulnerable Populations 197
vaccines against typhus. Physicians injected blood infected with typhus into 40 invol-
untary subjects, who served as a treatment group. Overall, they infected 1,000 pris-
oners, 158 of whom died.
In experiments at Buchenwald, physicians tried to cure gay men of being homo-
sexual with hormone shots, had inmates shot to study gunshot wounds, starved inmates
to study the physiology of nutrition, and amputated women’s bones and limbs to study
regeneration. To study malaria, physicians used Anopheles mosquitoes to infect subjects.
Physician Ernst Grawitz infected legs of women with staphylococci, gas, and tetanus
bacilli. In testing sulfa drugs, he rubbed into wounds particles of glass and stone.
In experiments at Ravensbrück, physician Sigmund Rascher devised his “sky
ride wagon” to simulate rapid changes in altitude. Victims were locked inside an
enclosed box on wheels with monitoring equipment inside.1 Rascher froze 100 nude
Jewish and Russian prisoners in icy waters to study techniques to revive downed
pilots in similar waters. He also forced nude Jewish women to revive the subjects
sexually, degrading the subjects and women for the amusement of the guards.
Josef Mengele
Josef Mengele, known as the Angel of Death, participated in the deaths of 400,000
victims in concentration camps. Ambitious, young Mengele sought fame and stud-
ied medical anthropology and genetics between 1930 and 1936, when eugenics
movements swept Germany and America.
Contrary to some accounts, German medical schools did not resist, but led,
Nazi eugenics and the killing of undesirables. To advance, Mengele joined the
Brownshirts, a fanatical Nazi movement that promoted Aryan racial purity.
Mengele needed groundbreaking research to become a full professor. In 1943
at the Auschwitz concentration camp, he experimented to overcome the effects of
genetics by modifying environments. He wanted to produce blue eyes, blonde hair,
and healthy bodies free of genetic disease.
As subjects, he needed identical twins, natural controls. So he examined incom-
ing trains of boxcars filled with Jews, looking for twins and other usable subjects,
signaling his choices with a flick of his wrist.
He injected blue dye into children’s eyes to see if he could create blue eyes. To
see if twins could be produced, he forced female twins to engage in coitus with
male twins. He interchanged blood of identical twins to observe results; he inter-
changed blood between pairs of twins.
One pair of fraternal twins consisted of a hunchback and a normal child;
Mengele surgically grafted the hunchback to the normal child’s back, creating the
effect of conjoined twins. He accentuated this effect by sewing their wrists back to
back. A witness reported that when these conjoined children returned to the bar-
racks, “there was a terrible smell of gangrene. The cuts were dirty and the children
cried every night.”2
Mengele obtained between 150 and 200 twins, most of whom died. Mengele also
tested endurance by subjecting 75 prisoners to electric shock; 25 of them died imme-
diately. He subjected Polish nuns to high dosages of radiation to produce sterility.
He once found a hunchback and the hunchback’s son; he had both of them
killed, their bodies boiled, their flesh stripped, and their skeletons dipped in
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198 Chapter 9 Medical Research on Vulnerable Populations
gasoline for preservation for his anthropological studies of body types. Coming
upon seven dwarfs from a circus family, he exhibited them to visiting physicians.
When 300 Jewish children escaped a gas chamber, Mengele—cool, impersonal,
and detached—had them recaptured, lit a gasoline fire set in a large pit, and had
the children thrown in.
When the Russian army approached Auschwitz in 1945, Mengele escaped to
Paraguay. He lived there for 40 years, eluding Israelis who tried to capture him as a
war criminal. In later conversations with his grown son Rolf, he expressed no regret
for his actions: It was not his fault that Jews had to die at Auschwitz, he said, so why
not use them to advance medical knowledge and his own chances for a professorship?
Never captured or tried as a war criminal, Mengele died in Brazil in 1985.3
The Nuremberg Code
After World War II, at the Nuremberg trials in 1946, German physicians defended
themselves against charges of war crimes by saying that they had merely been fol-
lowing orders, that their experiments had been properly related to solving medical
problems of war, and that what they had done did not differ from similar research
done on captives by American physicians.
The judges at Nuremberg lacked a code of ethics for experimentation on captive
populations, so they created 10 principles for ethical experimentation, known as the
Nuremberg Code. Its most important principle was that people, even prisoners or
inmates of institutions, should freely consent to participation in any experiment.
Questionable American Research
In 1941, American researchers experimented on orphans at the Ohio Soldiers and
Sailors Orphan’s Home, on inmates at New Jersey State Colony for the Fee-
ble-Minded, and on patients at a mental institution in Dixon, Illinois.4 To develop
a vaccine against shigella, they injected deadened forms of the bacteria into subjects.
None died, but many got sick.
Some questionable research used military personnel as subjects. Cornelius
Rhoads, Director of Memorial Sloan Kettering Cancer Hospital in New York City,
led the military’s secret chemical warfare service. He exposed thousands of Amer-
ican troops to mustard gas, accidentally learning that the gas killed white blood
cells and cancerous cells. After the war, he experimented with mustard gas as an
anticancer drug.5 About 4,000 to 5,000 subjects inhaled mustard gas in gas cham-
bers. Altogether, in research conducted by the armed forces on poisonous agents,
60,000 subjects did not know what they were undergoing.6
During World War II, Franklin Roosevelt established the Committee on Medical
Research, which approached its work with a wartime mentality that carried over
after the war: Disease was the enemy, researchers battled it, and victory could be
won—with enough resources and enough will. As bioethicist David Rothman wrote,
during the war, ethical concerns about experiments carried little weight:
A wartime environment also undercut the protection of human subjects, because
of the power of the example of the draft. Every day thousands of men were com-
pelled to risk death, however limited their understanding of the aims of the war or
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Chapter 9 Medical Research on Vulnerable Populations 199
the immediate campaign might be. By extension, researchers doing laboratory work
were also engaged in a military activity, and they did not need to seek the permis-
sion of their subjects any more than the selective service or field commanders did
of draftees. … In a society mobilized for war, these arguments carried great weight.
Some people were ordered to face bullets and storm a hill; others were told to take
an injection and test a vaccine. In philosophical terms, wartime inevitably promoted
utilitarian over absolutistic positions.7
When subjects of secret chemical research later applied for treatment at veterans’
hospitals, the Veterans Administration (VA) denied that they had been exposed to
these agents. This scenario recurred after the war in Vietnam and after Operation
Desert Storm.
During the 1940s, radiation enthralled some physicians. Joseph Hamilton of the
University of California at Berkeley injected plutonium into 18 unsuspecting patients
diagnosed with cancer. According to Kenneth Scott, a scientist who later investi-
gated these abuses, two patients were mistakenly diagnosed with cancer but nev-
ertheless given “many times the lethal dose of plutonium.”8
Physicians also studied radioactive isotopes used in diagnosis and research. In
the late 1940s at Vanderbilt University, physicians injected 819 pregnant women
with radioactive iron in a nutritional study. A study in 1960 found that three of
their children died of rare forms of cancer.9 In 1945, Eda Charlton entered Strong
Memorial Hospital in Rochester, New York, with a mild case of hepatitis and was
secretly injected with plutonium-239 to study how her body eliminated radiation.
Physicians then secretly followed her for years to observe the effects (she died of a
heart attack in 1983).
From World War II to the mid-1970s, physician-researchers subjected over 16,000
American patients to radiation experiments.10 The Department of Energy or its prede-
cessors conducted at least 435 experiments in 21 states. From the 1940s to the 1960s,
physicians exposed 1,500 military aviators and submarine crewmen to encapsulated
radium on the end of wires inserted high into their nostrils for several minutes.11
In another experiment, physician-researchers paid 130 male prisoners $200 to
undergo X-ray radiation of their testicles; afterward, these men got vasectomies. In
another, physicians injected plutonium into an indigent 36-year-old Texan’s injured
leg, which surgeons then amputated. In 1995, the President’s Committee on Human
Radiation Experiments investigated these experiments and concluded that the gov-
ernment should apologize to involuntary subjects and should compensate people
who had been injured.12
In 1966, Harvard medical professor Henry Beecher criticized 22 specific medical
experiments published in medical journals that had not obtained consent of sub-
jects; he pointed out that this was the norm and criticized this fact.13 About the
same time, physician Henry Pappworth similarly criticized 500 medical experi-
ments.14 That year, the U.S. Public Health Service began to require informed con-
sent of subjects, an important fact in judging the Tuskegee Study.
In 1991 in Operation Desert Storm, officers forced soldiers to take experimental
vaccines against biological agents. Federal law stated that, under operational condi-
tions, soldiers could not refuse such vaccinations. Subsequently, many soldiers
became sick. For years afterward, the Pentagon and Department of Defense denied
that their sickness was service-related. Yet the military’s own records showed many
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200 Chapter 9 Medical Research on Vulnerable Populations
causes of such sickness, especially acting in combination, with sand storms, biolog-
ical weapons, oil fires, contaminated water, rare microorganisms, the vaccines dis-
cussed earlier, chemical vapors from bombed Iraqi storage areas, unspent rocket
fuel, and high levels of stress.15
THE TUSKEGEE STUDY (OR “STUDY”)
Nature and History of Syphilis
Past victims of untreated syphilis included Cleopatra, King Herod of Judea, Char-
lemagne, Henry VIII, Napoleon Bonaparte, Frederick the Great, Catherine the
Great, Christopher Columbus, Paul Gauguin, Franz Schubert, Albrecht Dürer,
Johann Wolfgang von Goethe, Friedrich Nietzsche, John Keats, and James Joyce.16
Between 1900 and 1948, and especially during the two world wars, American
reformers mounted the Syphilophobia Campaign. Reformers emphasized that prosti-
tutes spread syphilis and that it rapidly killed. As an alternative for men to visiting
prostitutes, they advocated clean, active sports, or “Muscular Christianity.”
Anti-syphilis crusaders split twice over methods to prevent spread of syphilis:
once during World War I over giving out condoms and again during World War II
over giving out penicillin. In each conflict, reformers who wanted to reduce the
harm of syphilis battled those who wanted to reduce illicit behavior.17
This conflict repeated over the next century in battles about venereal diseases,
prostitution, alcoholism, drug addiction, gambling, and sex education. The Harm
Reduction Movement (HRM) focuses on reducing the associated harms of these
behaviors, not on moral censure or eliminating the behaviors. Moralists who oppose
HRM attack the illicit behavior and view HRM as enabling it, for example, by
teaching men how to use condoms.
During the world wars, the armed services adopted HRM. Commanders who
needed healthy troops ordered the release of condoms in the first war and penicillin
in the second. After the wars, returning troops continued to use both, normalizing
these practices.
Physicians today treat syphilis with penicillin. Such treatment has been possible
only since 1948, when penicillin became available to everyone.
Schaudinn discovered in 1906 the spirochete that causes syphilis. It is a chronic,
contagious bacterial disease, often venereal and sometimes congenital. It has three
stages. In the first stage, primary syphilis, spirochetes mass and produce a primary
lesion, a chancre (pronounced “SHANK-er”). During this stage, syphilis is highly
infectious. After the chancre subsides, the disease spreads silently for a time, but
then produces an outbreak of secondary symptoms such as fever, rash, and swollen
lymph glands.
In the second stage of latent syphilis, spirochetes disseminate from the primary
lesion throughout the body, producing systemic and widespread lesions, usually in
internal organs. Syphilis may then spread silently from 1 to 30 years. During this
stage, symptoms vary so widely that syphilis was once known as the Great
Pretender.
In the last stage of tertiary syphilis, chronic destructive lesions damage the car-
diac and neurological systems. Syphilis then may produce paresis (slight or
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Chapter 9 Medical Research on Vulnerable Populations 201
incomplete paralysis), gummas (gummy or rubbery tumors), altered gait, blindness,
or lethal narrowing of the aorta.
Beginning in the sixteenth century, to treat syphilis physicians applied the
heavy metal mercury as a paste on the back. During the nineteenth century, they
similarly administered another heavy metal, bismuth. Neither mercury nor bismuth
killed the spirochetes, though they ameliorated symptoms.
In 1909, after the spirochete causing syphilis had been identified, two researchers—a
German, Paul Erlich, and a Japanese, S. Hata—tried 605 forms of arsenic and discovered
a “magic bullet” against it in combination of 606 heavy metals (which included arsenic).
Erlich humbly called this Salvarsan (implying salvation from syphilis); its generic name
is arsphenamine.18 After finding that it cured syphilis in rabbits, Erlich injected it intra-
muscularly into men with syphilis.
At first, Salvarsan seemed to work wonders, and during 1910, physicians greeted
Erlich with standing ovations. Later, syphilis recurred in some patients treated with
Salvarsan, and some died, either from syphilis or from Salvarsan. Erlich maintained
that the drug had been given incorrectly, but he still developed a less toxic form,
Neosalvarsan.
Physicians injected Neosalvarsan intramuscularly in 20 to 40 dosages over a year,
charging patients a dollar per visit. For full treatment, patients needed both time and
money. Neosalvarsan was no one-time treatment for syphilis, as penicillin later was.
Between 1890 and 1910, Norwegian Caesar Boeck studied the natural course of
untreated syphilis in 1,978 subjects. He correctly believed that heavy metals removed
only the symptoms of syphilis. Because they killed some syphilitics, he studied
whether subjects might fare better if left untreated.
In 1929, Boeck’s successor, J. E. Bruusgaard, selected 473 of Boeck’s subjects
for further evaluation.19 Bruusgaard learned that of subjects who had had syphilis
for more than 20 years, 73 percent were asymptomatic. Because this discovery dra-
matically contradicted the Syphilophobia Campaign, the leaders of this movement
resisted the fact that syphilis did not universally kill, much less did not do so rapidly
(foreshadowing similar battles later about AIDS). Even more disturbing to the Syph-
ilophobia Campaign, Bruusgaard confirmed that some latent syphilitics might never
develop symptoms at all.
So when the Tuskegee Study began in 1932, Boeck’s and Bruusgaard’s studies
had caused physicians to question the received views about the natural course and
treatment of syphilis.
The Racial Environment
In the 1930s, American-medicine was racist. Most physicians held stereotypes about
African-American patients, as in this example from a 1914 Journal of the American
Medical Association:
The negro springs from a southern race, and as such his sexual appetite is strong;
all of his environments stimulate this appetite, and as a general rule his emotional
type of religion certainly does not decrease it.20
Physicians saw African-Americans as dirty, shiftless, promiscuous, and incapa-
ble of personal hygiene. In 1900, a Georgia physician wrote, “Virtue in the negro
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202 Chapter 9 Medical Research on Vulnerable Populations
race is like ‘angels’ visits’—few and far between. In a practice of 16 years in the
South, I have never examined a virgin over 14 years of age.”21 In 1919, a medical
professor in Chicago wrote that African-American men were like bulls in furor sex-
ualis, unable to resist copulation around females.22
Given such racism, white physicians around 1929 saw syphilis as a natural
consequence of low character in African-Americans, described by one white physi-
cian as a “notoriously syphilis-soaked race.”23 Such physicians also assumed that
African-American men would not seek treatment for venereal disease.
Development of the Tuskegee Study
A Study in Nature Begins. Physiologist Claude Bernard in 1865 distinguished stud-
ies in nature from normal experiments: In the former, someone merely observes what
would have happened without any interventions; in the latter, scientists manipulate
a variable. The Tuskegee Study was a study in nature.
The great physician William Osler once said, “Know syphilis in all its manifes-
tations and relations, and all other things clinical will be added unto you.”24 Yet as
of 1932, syphilis’s natural history had not been documented, and because of Boeck/
Bruussgaard’s results, physicians doubted the inexorability of its course.
This explains why the U.S. Public Health Service (USPHS) believed it needed
a study in nature. Around 1929, six counties in America had high rates of syphi-
lis—above 20 percent—and a charity, the Julius Rosenwald Foundation of Philadel-
phia, treated all syphilitics in those counties with Neosalvarsan. In 1930, this
foundation surveyed African-American men in Macon County, Alabama, where
Tuskegee is the chief town. Its citizens were 82 percent black, and its rate of syphilis
was then the highest in the nation, 36 percent. The foundation treated or partially
treated some of these 3,694 syphilitics with Neosalvarsan.
Then something unforeseen happened: In 1929 the Great Depression began.
Soon, funds for charity plummeted, and the Rosenwald Foundation left, hoping that
USPHS would continue its program. Funds for public health also plummeted, and
in 1935, the USPHS budget fell from $1 million to less than $60,000.
In 1931, USPHS repeated the Rosenwald Foundation’s survey of syphilis in
Macon County, testing 4,400 African-American residents, and found that 22 percent
of men had syphilis, as well as a dangerous 62 percent rate of congenital syphilis.
Of great importance for the Tuskegee Study, this survey identified 399 African –
American men who had had syphilis of several years’ duration, but who had never
been treated.
The Surgeon General himself, Raymond Vonderlehr, wrote in 1936 in the Journal
of the American Medical Association that the Tuskegee Study was “an unusual oppor-
tunity to study the untreated syphilitic patient from the beginning of the disease to
the death of the infected person.”25 His decision began the Tuskegee Study.
Three points deserve emphasis. First, the 399 subjects had latent syphilis, not
infectious syphilis. During this stage, syphilis is largely noninfectious during sexual
intercourse. Second, researchers did not divide the 399 subjects into the typical
experimental and control groups: They were all simply observed. There was, how-
ever, another group of natural controls, 200 age-matched African-American men
living in Macon County who had never had syphilis.
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Chapter 9 Medical Research on Vulnerable Populations 203
Third, the 399 men with syphilis and the 200 men without it were perfect for a
study in nature because they were so vulnerable: They were poor, illiterate, and tied
to the land as tenant farmers. As such, unlike other people with syphilis over the
next four decades, they were unlikely to ever leave Macon County. Partly because of
this vulnerability, Vonderlehr implied, they presented an “unusual opportunity.”
Vonderlehr had no sense that it might be wrong to use such vulnerable subjects
in a lifelong experiment. Like many of his time, he may have assumed that people
with syphilis got what they deserved and that these poor black men would never
have had the means, will, or opportunity to get treatment, even though the Public
Health Service could have one day provided it.
The Middle Phase: Poor Design. No one physician oversaw this study. It lacked
written protocols, and later investigators often mixed up the subjects in the no-treat-
ment group of 399 syphilitics with the 200 “controls” without syphilis. Nurse Eunice
Rivers, an African-American nurse assigned to stay in Tuskegee and keep track of
the study, kept poor records, lost them, and because many of the men had the same
last names, later researchers often confused one patient for another.
Researchers assumed that controls would remain uninfected, but in a county
where one in three people had syphilis, many controls eventually contracted syph-
ilis. Unfortunately, when they happened, some were switched to the no-treatment
group of syphilitics.
The study had gaps. Federal doctors visited in 1939 and then not until 1948;
seven years passed between visits in 1963 and 1970. Only Nurse Rivers held the
shaky study together.
During the course of the research, many of the 399 syphilitic subjects, who were
supposed to remain untreated, obtained Neosalvarsan or penicillin outside Macon
County. James Lucas, a CDC physician, said, “Effective and undocumented treat-
ment had been given to the vast majority of patients in the syphilitic group.”26 So
researchers would never know whether any observed subject really represented the
consequences of untreated syphilis or when the subject had contracted it.
Ultimately, the study proved nothing. Before it began, physicians knew that
syphilitics had greater morbidity and mortality than nonsyphilitics, and from Bruus-
gaard’s discovery, that not all men in the latent phase died of syphilis. The Tuskegee
Study added nothing new.
Spinal Taps and Deception. When physicians returned, they wanted to know, first,
if they had a subject in the study group, and second, if so, how far his syphilis had
progressed. To determine progression, they did spinal punctures on 271 of the 399
syphilitic subjects.
In doing spinal taps, they inserted a 10-inch needle between two vertebrae into
the cerebrospinal fluid to withdraw a small amount of fluid. Because this is a deli-
cate and uncomfortable process, physicians warned subjects to stay still, lest the
needle swerve and puncture their spinal cord or spinal nerves, causing infection
and possible paralysis.
Some physicians then and now regard spinal taps as insignificant, justified to
prove a diagnosis. On the other hand, professionals who describe spinal taps this
way may be thinking more about administering one rather than receiving one.
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204 Chapter 9 Medical Research on Vulnerable Populations
Unlike taking blood, a spinal tap is not a minor procedure. Some patients
experience effects such as being unable to stand for a week without a severe head-
ache. One person in 1 million will become paralyzed or permanently comatose.27
Tapping someone involuntarily, without obtaining informed consent, is legally
a form of battery. Researchers who need healthy volunteers for spinal taps offer
subjects as much as $1,000.
To induce subjects to travel to town and undergo these painful taps, physicians
in this study offered a series of incentives: free transportation, free hot lunches, free
medicine for any disease other than syphilis, and free burials.
But these freebies and the persuasion of Nurse Rivers failed to get all men to
come to town for the “round-ups,” so researchers resorted to deception. Infamously,
they told the black men that they had “bad blood” and that the spinal taps were treatment
for their bad blood. Researchers sent the subjects the following letter, under the
imposing letterhead “Macon County Health Department,” with the subheading
“Alabama State Board of Health and U.S. Public Health Service Cooperating with
Tuskegee Institute”:
Dear Sir:
Some time ago you were given a thorough examination and since that time we hope
you have gotten a great deal of treatment for bad blood. You will now be given your
last chance to get a second examination. This examination is a very special one and
after it is finished you will be given a special treatment if it is believed you are in
a condition to stand it.28
The “special treatment” mentioned was the spinal tap to culture for neurosyph-
ilis. The subjects were instructed to meet Nurse Rivers for transportation to “Tus-
kegee Institute Hospital for this free treatment.” The letter closed, in capitals:
REMEMBER THIS IS YOUR LAST CHANCE FOR SPECIAL FREE TREATMENT.
BE SURE TO MEET THE NURSE.
To repeat, the researchers never treated the subjects for syphilis. Although pen-
icillin was developed around 1941–1943 and was widely available by 1948, the subjects
in the Tuskegee Study never received it, even during the 1960s or up to 1972. During
World War II, researchers contacted the local draft board, which prevented eligible
subjects from being drafted, and hence from being treated for syphilis with penicil-
lin by the armed services.
Revelation of the Study to the World. In 1966, USPHS venereal disease investiga-
tor Peter Buxtun learned about the study. By this time, supervision of the study
(and Buxtun) had moved to the newly created Centers for Disease Control (CDC)
in Atlanta. When Buxtun asked about the study, the CDC threatened to fire him.
By 1969, Buxtun’s protests led to a meeting of a small group of physicians at
CDC to consider stopping the Tuskegee Study or revealing it. Ultimately, they voted
to continue the study and to keep it secret.
In 1970, the American Public Health Association published a monograph on
syphilis. It stated that treatment for late benign syphilis should consist of “6.0 to
9.0 million units of benzathine penicillin G given 3.0 million units at sessions seven
days apart.”29 The first author was William J. Brown, head of CDC’s Tuskegee
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Chapter 9 Medical Research on Vulnerable Populations 205
section from 1957 to 1971. Brown, on the CDC committee in 1969, had argued for
continuing the study and not giving penicillin to any subjects.
Buxtun eventually contacted Jean Heller, who worked for the Associated Press.
On July 26, 1972, her story appeared on front pages of newspapers nationwide.30
She described a study run by the federal government in Tuskegee, Alabama, where
poor, uneducated African-American men had been used as guinea pigs. After noting
the terrible effects of tertiary syphilis, she stated that in 1969, a CDC study of 276
of the untreated subjects had proved that at least seven subjects died “as a direct
result of syphilis.”
Heller’s story stunned congressmen. Senator William Proxmire called it a
“moral and ethical nightmare.” In reply, J. D. Millar, chief of Venereal Disease Con-
trol at CDC, said that the study “was never clandestine,” correctly pointing to 15
published articles in medical journals over 30 years.
After Heller’s story appeared, the Secretary of Health, Education, and Welfare
terminated the study. The CDC estimated that 28 syphilitics had died of syphilis
during the study; it then gave penicillin to the remaining subjects.
In 1973, on behalf of the Tuskegee subjects, lawyer Fred Gray filed a class-action
suit against the federal government. In 1974, the U.S. government settled out of
court. According to the settlement, living syphilitics received $37,500 each; heirs of
deceased syphilitics, $15,000 (since children might have had congenital syphilis);
heirs of living controls, $16,000; heirs of deceased controls, $5,000. Controls and
their descendants received compensation, because they and their families had been
deprived of antibiotics during the decades of the study. The government provided
free lifetime medical care for the subjects, their wives, and their children.
In 1972, as a direct revelation of the study, the federal government required all
institutions that conduct human medical experimentation and receive federal funds
to have Institutional Review Boards (IRBs). Today, IRBs must scrutinize written
proposals and defend against abuses in medical research.
In 1988, 21 of the original 399 syphilitic subjects were still alive, each of whom
had had syphilis for at least 62 years.31 In addition, 41 wives and 19 children had
evidence of syphilis and had received free medical care.
In 1997, President Clinton met four of the eight living survivors to apologize
for the Tuskegee Study, “What the United States did was shameful, and I am sorry.”32
The youngest survivor then was 87, the oldest between 100 and 109.33 By then, the
government had paid $10 million to the study’s original 600 members or to their
families or heirs, who numbered more than 6,000. Because of lack of treatment for
syphilis of men in the study, any of these other people might have contracted
syphilis.34
Perhaps the worst effect of revelation of the study was distrust by African-Americans
of medical experiments, a legacy that researchers today must overcome.
ETHICAL ISSUES IN THE TUSKEGEE STUDY
Informed Consent and Deception
In the Tuskegee Study, the subjects did not know they were part of a government
study lasting throughout their lives, did not even know what syphilis was, and did
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206 Chapter 9 Medical Research on Vulnerable Populations
not know that they weren’t being treated with available drugs. In other words,
they had no informed consent, which many critics considered to be ethically
outrageous.
R. H. Kampmeier, an emeritus professor of medicine at Vanderbilt Medical
School, worked as a syphilologist during the decades of the study.35 He argued that
a study undertaken in the 1930s could not be faulted for lack of informed consent,
which began only after 1966. Would it make sense, he argued, to judge Pasteur
unethical because he, too, did not get consent?
Kampmeier cited another landmark study by USPHS in 1943 that studied giving
penicillin to 35,000 syphilitics; it did not get consent from subjects. Medical histo-
rian and physician Thomas Benedek dismissed informed consent in the Tuskegee
Study as “anachronistic,” emphasizing that USPHS did not require informed con-
sent until 1966.36
While it is true that informed consent in medical experiments was not mandated
by court decisions until 1966, the presumption had always been that physicians
would “First, do no harm” to their patients. Not obtaining consent for procedures
that might benefit subjects differs from procedures that might harm subjects.
Finally, and granted that telling patients the truth was not legally required
before 1966, was it ethical for the Tuskegee researchers to lie to their subjects for
all those decades? Isn’t the truth what one person owes another, especially as doctor
and patient?
Racism
The Tuskegee Study took place in Alabama and all its subjects were African-American.
Under such circumstances, was it only a coincidence that no subjects were white?
Would white subjects have been deceived and left untreated the same way?
In his classic work, Bad Blood, medical historian James Jones saw the Tuskegee
Study as a result of pervasive racism in American medicine during the 1930s.
It is true that some physicians then believed that syphilis ran a different course
in different races, and this implied the need for a parallel study of untreated white
syphilitics. That the USPHS did no parallel study of white subjects shows that it
saw black subjects as expendable but not white subjects.
Media Coverage
In defending the Tuskegee Study, Kampmeier objected to the “great hue and cry”
in the media in 1972 and to journalists’ claims that “treatment was purposefully
withheld to evaluate the course of untreated disease.” He said about Time and
American Medical News, “In complete disregard of their abysmal ignorance, members
of the fourth estate bang out anything on their typewriters that will make
headlines.”37
With regard to the first objection, Kampmeier exaggerated the “hue and cry”
of the media. Indeed, the media botched the story. Coverage shrank within days,
and the story moved to the back pages, where only short paragraphs followed it.
To begin with the second objection, Kampmeier attacked the media for report-
ing the damaging aspects of the study, such as the withholding of treatment. In
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Chapter 9 Medical Research on Vulnerable Populations 207
defense of the media, researchers did intend to withhold treatment. That was pre-
cisely the intention of the study.
The Tuskegee Study deserved far more attention. True, it had complex issues
that involved racism at a time when racial turmoil upset Americans, but today such
a story would receive weeks of nationwide scrutiny and probably get a congressional
hearing on television.
The relation then between medicine and the media can also be questioned.
Before Heller’s story broke, the Tuskegee Study had been reported repeatedly in at
least 17 articles in medical journals between 1936 and 1972. Researchers did not
conceal the study within medicine. Despite this, no professional publication, phy-
sician, or editor alerted the nation to the story.
Between 1966 and 1971, one African-American professional at the CDC mailed
boxes of documents about the study to several national newspapers and maga-
zines.38 Nothing happened. Why is that?
The answer is important to understanding many issues in medical ethics and
to whistleblowing about corruption. Print and television reporters need an expert
to help them understand such complex stories and, equally important, to take
responsibility for claims about wrongdoing. Virtually no reporters then or now have
the medical background to understand such complicated stories and, without that,
cannot risk charging physicians with possible crimes.
A natural tendency also exists to want someone else to be the whistleblower and
to bear the brunt of retaliation. As a result, merely mailing information or passing
it along conversationally is not enough for reporters to publicize wrongdoing.
Harm to Subjects
Kampmeier argued that if the Tuskegee Study had never occurred, its subjects would
have received no treatment and would have been no worse off. Such a claim can
never be proved. If the Tuskegee Study had not occurred, many things might have
happened. Another charity might have provided Neosalvarsan. A writer like John
Steinbeck might have soon written a novel about syphilis in Macon County, arousing
national concern and getting penicillin to people there infected with syphilis.
So what harm, if any, resulted to subjects with syphilis from nontreatment? This
question might seem even absurd: If subjects were left untreated, of course they
must have been harmed! However, the issue is not that simple.
In 1931, penicillin was unavailable, so physicians withheld Neosalvarsan from
subjects. Because Neosalvarsan was expensive and cumbersome to administer, even
if this study had not occurred, subjects might not have received it. Boeck and
Bruusgaard had also undermined claims about the benefits of heavy metals, so harm
is difficult to prove. In a review of medical evidence available in 1940, medical
historian Benedek concluded that in 1937, untreated syphilitics actually lived longer
and better than those partially treated with heavy metals.39
Not everyone agrees. UAB professor of internal medicine Benjamin Friedman,
whose career spanned the decades of this study, countered:
In the 1940s it was known that patients receiving as few as 20 injections of arsen-
icals rarely developed symptomatic aortic disease. Since we could not determine in
advance which of the latent syphilitics would, after 20 or 30 years, develop
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208 Chapter 9 Medical Research on Vulnerable Populations
symptomatic aortic disease, it was necessary to treat all of them. One cannot main-
tain that some small number of syphilitics deprived of treatment did not therefore
suffer injury.40
By 1934, the major professional organization of physicians treating syphilis in
America, the Cooperating Clinical Group, proved that use of heavy metals improved
Bruusgaard’s statistics and recommended that all syphilitics get Neosalvarsan, mer-
cury, and bismuth.41 Even if many patients could not afford such therapy, they
should have been told about it.
Later during the study, penicillin became available. Although Alexander Flem-
ing discovered penicillin in 1929, the world did not appreciate his discovery until
1941, and only around 1946, as a result of wartime production to treat soldiers, did
penicillin become available to most Americans. By 1948, anyone could get it.42
Kampmeier argued that withholding penicillin in 1946 did not harm subjects
with latent syphilis, which he said was a “chronic, granulomatous, self-limiting dis-
ease” and not fatal. He argued next that proof of penicillin’s effectiveness did not
come until 1948 and then only for primary syphilis. So the study’s subjects by 1948
could no longer have been helped by penicillin; the damage to them had already
been done.43
Benedek disagreed. He concluded that giving penicillin to latent syphilitics in
1948 “might have exerted a definitely beneficial effect on the prognosis of only
12.5 percent of the subjects.”44 Still, that would have helped 50 subjects.
Effects on Subjects’ Families
“Virtually all subjects were or had been married” and had an average of 5.2 chil-
dren.45 Recall that Macon County had a rate of congenital syphilis of 62 percent.
When we consider the subjects’ families, wouldn’t the men in the study want
to know they had syphilis? Even in latency, wouldn’t they want to know they could
become infectious again? Did the researchers withhold the truth because they
thought these men couldn’t refrain from sex?
These researchers subjected women and children in Macon County to harm.
Either the researchers discounted this harm or thought it didn’t matter.
Kant and Motives of Researchers
When physicians at CDC and USPHS debated the Tuskegee Study in 1969, many
assumed that if no harm could be proved, nothing unethical had been done. This
is also Kampmeier’s unstated assumption.
Focusing on consequences, however, is only one way to judge morality. We can
also adopt, not a consequentialism or utilitarianism, but a Kantian ethics focused
on motives or a virtue ethics focused on the character of researchers.
Although we cannot prove that being left untreated harmed the study’s sub-
jects, it may have been only good luck that the study caused no more harm than
it did. Why is that?
Historical evidence cuts both ways. We cannot use differing historical standards
at differing times to excuse lack of informed consent but not pay attention to what
else researchers believed at the time. Let us put ourselves in the minds of
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researchers in the late 1940s. The crucial fact is that when penicillin became available,
most physicians believed it would help latent syphilitics.
So they believed that subjects would be harmed by not getting penicillin. For
all anyone knew in 1948, penicillin could have helped patients with aortic heart
disease or at least would have ameliorated it.
For Kantian ethics, researchers deliberately willed harm on these subjects. They
used them as “mere means,” as guinea pigs, and could not universalize such behav-
ior as a maxim for all physicians to act on. Not only did they lack what Kant calls
a “good will,” they had an ill will toward vulnerable subjects.
It is no good appealing to sophisticated knowledge that came later about how
the damage from syphilis had already occurred. Researchers then believed they
were depriving syphilitics of something likely to help them, or depriving them
of something that could help them not pass syphilis on to their female partners.
But out of a desire by researchers to prove the final ravages of syphilis, or lack
thereof, researchers deceived subjects and believed they were allowing them to
be harmed.
OTHER STUDIES LIKE THE TUSKEGEE STUDY
HIV Prevention in Africa: Another Tuskegee Study?
Unfortunately, research by physicians in wartime and the Tuskegee Study are not
the only examples in the history of modern medical ethics of questionable research
on vulnerable subjects. We now discuss a famous study in Africa that involved not
syphilis but AIDS, and readers can see how the issues of the Tuskegee Study frame
some of the criticisms of the African study.
In 1994, researchers had proved that giving the drug AZT (zidovudine) during
pregnancy cut by two-thirds transmission of HIV from mother to child in North
America.46 In 1995, CDC, NIH, and the World Health Organization (WHO) began
to study whether doing a similar study in Africa could prevent HIV in the 800
infected babies born there every day and started a randomized control trial (RCT).
One might well ask, “As the ability of AZT to block vertical HIV transmission
had already been proven, why conduct such a study at all in Africa?” One answer:
the strain of HIV in Africa differs from that common in North America. A second
answer: in Africa, researchers felt that they needed a quick proof that AZT could
block mother-to-child transmission of HIV.
In 1997, Marcia Angell, executive editor of the New England Journal of Medicine,
claimed that this research mimicked the Tuskegee Study because researchers gave
pregnant, HIV-infected black women placebos (harmless sugar pills), and thus
babies were born with preventable HIV infections.47 Because giving AZT to all HIV+
pregnant women was the American standard of care, not giving AZT in a placebo
group was unethical: “If it is unethical to do placebo-controlled trials in America,
it should also be unethical to do them in third-world countries.”48
This study had subjects who were highly vulnerable because they were (1) black,
(2) female, (3) poor, (4) illiterate, (5) victims of sexually transmitted diseases, and
(6) without other available treatment. Like the Tuskegee Study, magisterial but dis-
tant governmental agencies conducted the research. Like the Tuskegee Study,
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210 Chapter 9 Medical Research on Vulnerable Populations
vulnerability and powerlessness characterized the subjects. Columnist Ellen Good-
man noted that the Tuskegee Study had not ended but had been merely exported.49
Apologists passionately retorted that, had their research not been done, infected
mothers would not have gotten AZT and their babies would have been infected
anyway.
African officials replied that Angell and Goodman were ethical imperialists,
imposing American ethical standards on African countries.50 Such officials were
also black and had lost children to HIV unlike the white USPHS physicians of the
Tuskegee Study.51
They also replied that if they could prove—via a placebo-controlled trial—that a
shorter regimen of AZT could reduce HIV transmission by half, they could save
150,000 children a year. If skeptics such as Angell caused delays of proof, more
children would die.
Officials also claimed that a placebo-controlled trial of HIV-transmission could
be done faster and with fewer subjects than a AZT-controlled study, and that once
they had good results, African governments would give all pregnant, HIV+ women
the new, smaller dosage of AZT.
Researchers also argued procedurally that review committees in both countries
had approved the studies and that, unlike the Alabama men, the women themselves
had consented. Subsequent interviews by the New York Times cast doubt on how
much the women understood.
Angell argued that researchers didn’t need placebo-controlled studies; compar-
ing dosages of AZT to other anti-HIV drugs could prove the same thing. Given the
poverty of such countries, she denied that a proven, reduced dosage would later be
given to all pregnant women because—even at $80—AZT costs 11 times more per
year than that normally spent on such African women.
Both sides invoked justice.52 One philosophical side invoked Bentham, utilitar-
ianism, and public health ethics. The other hailed Kant, his axiom that people can
never be used as a “mere means,” and his belief that ethical principles are not local
but universal.
For researchers, the risk/benefit ratio had to be different for poor, illiterate
women in impoverished countries who otherwise would not have gotten treatment.
For critics, the same reasoning had led to the Tuskegee Study and to Nazi experi-
ments: “They’re going to get die anyway, so we might as well study them to learn
something.”53 As Angell retorted, “People can’t be used as a means to a noble end.”54
In 1998, CDC proved that $80 worth of AZT in the last four weeks of pregnancy
cut transmission in half, and they suspended the study.55 At this early cessation,
both sides claimed victory.
The Krieger Lead Paint Study
In 2001, after Ellen Roche died in a study of a drug to prevent asthma, the federal
Office of Protection from Research Risks (OPRR) halted all federally funded research
at Johns Hopkins Medical School. When she volunteered for the study, Ellen was
healthy; soon, she was dead.
After its research stopped, a physician from Hopkins on television denounced
suspension of Hopkins’s research monies, claiming Hopkins had only killed one
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Chapter 9 Medical Research on Vulnerable Populations 211
person in many decades of medical research and that lives would be lost from such
a suspension because of delayed cures.
The Krieger case was a study by a branch of Johns Hopkins Medical School
that studied mental handicaps in children from lead paint—which six of seven
judges on Maryland’s highest court likened it to the Tuskegee Study.56 The study,
conducted in the mid-1990s by Hopkins’s Kennedy Krieger Institute, recruited 108
poor, vulnerable, black families to live in East Baltimore in houses with lead paint.
Ingesting lead-based paint is a known cause of cognitive disability in small
children. According to the Krieger Institute, the study sought cheaper ways to
reduce lead contamination in houses so landlords in East Baltimore would not aban-
don them.
Did the parents understand the nature of the study? Did they understand the
risk to their children by living in these houses? “It can be argued that the research-
ers intended that the children be the canaries in the mines but never clearly told
the parents,” one critic said.57 Moreover:
Maryland Court of Appeals Judge Dale R. Cathell, who wrote last week’s scathing
opinion, said the board [had] instructed Kennedy Krieger researchers to write con-
sent forms for study participants that skirted federal regulations requiring disclosure
about risks.
The Court of Appeals ruling ordered trials to be held in lawsuits filed against
Kennedy Krieger by two women, Viola Hughes and Catina Higgins, whose children
were involved in the study. Hughes’s daughter now suffers from learning disabilities
and cognitive impairments, both of which are often associated with lead poisoning.
… Higgins says researchers withheld tests results that showed high levels of lead
contamination from her. …
Kennedy Krieger is a major institution in the study of lead paint abatement.
Marc Farfel, who conducted the study, said today that it identified more effective
ways to remove lead hazards and prompted legislation forcing landlords to remove
those hazards.58
Amazingly, an investigation by OPRR revealed that the IRB at Johns Hopkins,
which supposedly had reviewed and discussed the ethics of the Krieger Study and
all other research at the medical school, had rarely met face-to-face.
The Krieger Study resembled the Tuskegee Study in that vulnerable, poor black
people were deliberately recruited to a study where physicians foresaw harm to
subjects. Researchers rationalized the harm by saying that if the study had not
occurred, the subjects would have lived in such housing anyway. Revelation of the
Krieger Study further damaged already bad relations between Baltimore’s African-
Americans and Hopkins.
1946–1948: The Guatemalan Syphilis Study
In 2011, Wellesley historian Susan Reverby, while researching the Tuskegee Study,
chanced upon documents at the National Archives revealing that the USPHS
between 1946 and 1948 paid syphilis-infected prostitutes in Guatemala to visit pris-
oners and inmates of mental institutions to study how easily syphilis could be trans-
mitted and if penicillin could prevent transmission.59 When men failed to become
infected, researchers scraped penises and faces and injected infected pus, causing
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212 Chapter 9 Medical Research on Vulnerable Populations
about 1,300 of the 5,500 enrolled men to catch syphilis or gonorrhea. Following this
revelation, Secretary of State Hillary Clinton apologized to the Guatemalan people
for the actions of the United States in this shameful episode of research on people
even more vulnerable than those in the Tuskegee Study.
Financial Conflicts and Twenty-First-Century Research
The Bayh-Dole Act of 1980 erased an ethical bright line between academic and
corporate medicine and allowed universities and their researchers to patent and
reap royalties together. Since then, scandals about money keep recurring in medical
research.
Thirty-five years later, pharmaceutical companies fund most research into drugs
and devices at universities. They do not fund independent peer review of their new
drugs and do not publicize bad results. By indirectly paying physicians to test new
drugs and by financially encouraging physicians to recruit patients for experiments,
drug companies cause physicians to choose their drug and not the best drug for
their patients.
In 1998, a study by the Department of Health and Human Services concluded
that IRBs could no longer handle the job of protecting subjects from abuses in
medical experimentation.60 It found that IRBs were underfunded and overworked
and that the volume of work expected of volunteers could not be accurately and
conscientiously performed. Another study in 2002 by the Institute of Medicine
reached similar conclusions.61 Since then, several medical research centers
improved their structures for reviewing research, although financial conflicts
continue.
In 1991, the federal government adopted the Common Rule, under which uni-
versities’ IRBs must review all protocols the same way, regardless of funding. This
rule subjects all protocols to the same standards as those required by NIH and the
U.S. Federal Drug Administration (FDA).
Several scandals erupted in the 1990s, wherein a few physicians appeared to
have taken millions of dollars from drug companies for dubious research.62 Some
doctors in Georgia allegedly made $4 million over seven years from aggressively
soliciting people with schizophrenia for drug trials; they made another $6 million
over the same period from testing other drugs.63
In 1996, Apotex Inc. tried to suppress adverse findings by Nancy Olivieri, a
Canadian hematologist.64 When using its experimental iron chelating drug
(deferiprone) on patients with thalassemia, a heritable blood disorder, in a clinical
trial paid for by Apotex, she discovered serious risks and attempted to publish them,
but Apotex threatened to sue her for doing so. Because of its financial ties to Apo-
tex, her employer, the University of Toronto (UT), failed to support her. In 1998,
she published her findings and UT terminated her employment. The case exposed
the limits of academic freedom in Canadian medicine and the ties between medical
universities and drug companies. An investigation in 2001 by the Canadian Asso-
ciation of University Teachers vindicated Olivieri.65
Physicians who work for drug companies can make half-million dollars a year
flying around the country giving talks to physicians to promote a pharmaceutical
company’s new drug.
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Chapter 9 Medical Research on Vulnerable Populations 213
Medical journals run expensive ads from drug companies, and almost all med-
ical practices allow drug representatives to buy them and their staff expensive daily
lunches or dinners. Drug companies give these gifts because they work. Learning
to take free stuff from drug companies begins in medical school, when students
learn to expect free food at lunch paid for by drug companies. The organization No
Free Lunch tries to counter these gifts on medical students and physicians (look at
their website for more information).
Toward International Standards of Research Ethics
Over the last 50 years, Big Pharma has exported lots of research to people in devel-
oping countries, although less than 10 percent of that research is intended to benefit
such people.66 In North America and Europe, despite some famous exceptions,
consensus has developed about standards of ethical research.
During the past 50 years, many thousands of people in third-world countries
were subjects of studies, many of them placebo-controlled. One occurred in 1996
by Pfizer in Kano, Nigeria, during an epidemic there of deadly meningitis in chil-
dren. Pfizer researchers flew there and gave half of 200 infected children either the
low dosage of the standard antibiotic ceftriaxone or Pfizer’s experimental drug Tro-
van. Pfizer had never tested this drug in oral form on children.67
Researchers commonly create conditions most favorable to proving efficacy of
their own drugs, such as giving low dosages of standard drugs or “washing out” all
traces of previous drugs in subjects, making them worse off.68 In this study, five
children died who took Trovan, six died who took the lower dose of ceftriaxone,
and “many others [were] blind, deaf, paralyzed, or brain-damaged.”
Work over the past decade in bioethics has focused on four questions about
such medical research in developing countries: (1) How can we prevent vulnerable
patients from being exploited by research? (2) How can such patients give informed
consent? (3) Is it right to apply standards of research of developed countries to
research in developing countries, or can there be a double standard? (4) Are there
special problems of context in doing research on poor, illiterate people in developing
countries?
The first problem, of exploitation, can be illustrated by the fact that the 10
biggest pharmaceutical companies in 2002 had more combined profits than the
combined profits of the other 490 companies on the Fortune 500 list.69 Given such
profits isn’t any drug testing by Big Pharma on vulnerable patients likely to exploit
them? The 2005 film The Constant Gardener chronicles one such case in Africa. Is
there any way to adequately compensate poor Africans for being the guinea pigs
for new drugs that will mainly benefit children in North America?
The second problem, of informed consent, has been contested by people who
say it upholds an individualistic model of autonomous, educated patients not
applicable to members of illiterate tribes in South America and Africa. In the
vertical-HIV-transmission trial, consent of tribal leaders was the best that could
be achieved.
Perhaps that is so, but it also resembles excuses of the USPHS in not telling
the men of the Tuskegee Study about “bringing them to autopsy” because the men
were too ignorant to understand.
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214 Chapter 9 Medical Research on Vulnerable Populations
The third problem, a double standard, vexes many people. In America, IRBs and
the FDA monitor research, but nothing like these institutions exist in most developing
countries. Who then monitors, say, Merck Pharmaceutical’s research in Guatemala?
A problem here is where placebos can be used in developing countries. In
developed countries, a new drug or device is generally tested against the traditional
drug or device, not a placebo. Even where researchers did not originally do placebo-
controlled studies, new drugs are usually only tested against currently used drugs,
not placebos. Yet the vertical-HIV-transmission study on vulnerable African mothers
did use a placebo before it was stopped.
One solution is to have domestic IRBs of researchers monitor overseas research
and apply the same standards. In that case, the vertical-HIV-transmission research
could not have been done because, as said, giving AZT to all HIV+ babies was the
standard of care at the time.
The final dilemma concerns contextual problems of doing research overseas in
poor countries. In America but not in the middle of the savannah or jungle, should
a problem arise in a Phase I study of a drug, emergency rooms, EMT personnel,
and local hospitals are available to treat allergic reactions. Does that mean such
research can never be done in the wild?
The Collaborative Model
One widely discussed solution to most of these problems is for the institution spon-
soring the research and the area of the developing country to develop a long-term
partnership. Rather than an international company swooping down for a one-time
research trial, both sides should think of an arrangement lasting for decades. In this
way, both sides can potentially benefit.
First, research on vulnerable populations should not be done if such people
cannot benefit from the research at all. Second, if the research is successful, the
people on whom it has been tested should receive adequate supplies of the drugs
as partial recompense for their participation.
Third, it might be necessary to help a developing country build infrastructure
to facilitate a long-term partnership in research. When UAB built an AIDS hospital
in Zambia, it was necessary to fund small refrigerators running on small generators
to keep medicine cool in remote areas.70 Similarly, it might be necessary to train
and fund medical technicians, midwives, or local physicians to draw blood over a
decade in order to study the long-term effectiveness of interventions. More radically,
traditional tests for diseases depend on high-tech, faraway, diagnostic labs not avail-
able in developing countries. Lack of such labs and their results may affect the
health of many people in poor countries. To overcome this gap, point-of-care testing
with wireless transmission back-and-forth via satellites may be necessary to help
indigent populations.71
The reverse of this seems obvious: If no partnership exists, researchers will be
perceived as exploitive and countries will refuse to grant rights to investigate, to
take samples, or to apply for patents. If something like Severe acute respiratory
syndrome or SARS breaks out, this could be dangerous for the world.
Such collaboration is called the Fair Benefits Model and emphasizes sharing the
benefits of successful medical research.72 One good start is the third edition in 2002
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Chapter 9 Medical Research on Vulnerable Populations 215
of the International Ethical Guidelines for Biomedical Research Involving Human Subjects
by the Council for International Organizations of Medical Sciences (CIOMS).73
These are good guidelines for researchers in North American countries funded by
multinational pharmaceutical companies, using vulnerable subjects in low-resource
countries for the subjects, and include guidelines for compensating such subjects
who are injured in research.
The Death of Jesse Gelsinger
The death of teenager Jesse Gelsinger from gene therapy changed American medical
research. In 1999 in Tucson, Arizona, 17-year-old Jesse worked as a clerk and rode
a motorcycle on weekends. He volunteered for experimental gene therapy at the
University of Pennsylvania for his inherited disorder, ornithine transcarbamylase
(OTC) deficiency.
In OTC, the liver doesn’t properly cleanse blood of ammonia, produced in
normal metabolism, resulting in toxic levels. Many OTC newborns die around birth;
half don’t live to age 5. A new regimen of drugs and diet enabled Jesse to live to
be a teenager, but without a cure, he would eventually die.
Jesse entered the study as a healthy research volunteer. A friend said he “wanted
to prove he was a man.”74 Penn researchers claim they told Jesse that the experiment
wouldn’t help him, but that it might help OTC babies. Jesse wanted “to help save
lives,” his father said.
Penn researcher James Wilson injected an adenovirus into Jesse that contained
copies of the gene lacking in OTC patients. Four days later, Jesse’s liver had been
destroyed, his blood thickened to jelly, and all his organs shut down.75
A subsequent wrongful death lawsuit claimed that Wilson both knew that the
virus had injured other OTC adults and that he failed to explain this to the Gelsing-
ers. Penn bioethicist Arthur Caplan claimed Wilson’s study was never even possibly
therapeutic for Jesse, merely a Phase I safety-toxicity study, going so far as to say, “If
you cured anybody, you’d publish it in a religious journal. It would be a miracle. All
you’re doing is you’re saying, I’ve got this vector. I want to see if it can deliver the
gene where I want it to go without killing or hurting or having any side effects.”76
Wilson also had a financial conflict of interest. His company, Genovo, owned
patents on the adenovirus, and Biogen, Inc. had already paid Genovo $37 million
for rights to genetic therapies developed by Wilson and Genovo. Wilson denied that
money influenced his decisions, claiming that he was only motivated to be the first
to cure a genetic disease.77
Yet Wilson reported to the FDA only 39 of 700 problems about the virus,
although the law required reporting all 700. In 2000, researchers concluded that
adenoviruses should be used only as a last resort, not on healthy volunteers, and
NIH halted gene therapy.
The Gelsinger family settled out of court with Penn for undisclosed monies.
After an investigation of Wilson’s research, the NIH in 2000 suspended medical
research at Penn. After a congressional hearing into Jesse’s death, the NIH vowed
to better monitor medical research. As a result, it suspended medical research at
the University of Colorado Medical Center, at the University of North Carolina, at
Johns Hopkins Hospitals, and at the University of Alabama at Birmingham.
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216 Chapter 9 Medical Research on Vulnerable Populations
THE BUCHAREST EARLY INTERVENTION PROJECT (BEIP)
Nicolae Ceaușescu ruled Romania as a dictator as part of the Union of Soviet Social-
ist Republics from 1967 until he was killed in 1989. Desiring to increase his popu-
lation, he made use of contraception and abortions a crime, resulting in many
unwanted children, whose parents often dumped them in state-run orphanages. In
1990, over 170,000 children resided in Romanian orphanages.
In 2001, researchers Charles Nelson of Harvard Medical School, Charles
H. Zeanah of Tulane Medical School, and psychologist Nathan Fox of the University
of Maryland saw a study in nature, hence an opportunity to follow these children
to study how neglect damaged the developing brain. They screened 187 orphans
under the age of 31 months and divided them into two groups: a control group of
33 boys and 35 girls to remain in orphanages and an intervention group of 34 boys
and 34 girls, who were placed in foster homes.
The study continued until 2013, when the authors published their Romania’s
Abandoned Children, which became a landmark study in neuroscience proving that
lack of stimulation severely damages the brain.78 Hearing about BEIP, bioethicist
Joseph Fins likened it to the Tuskegee Study because a control group existed that
could have been helped by intervention.79
Nelson, Fox, and Zeanah replied that Romanian officials suspected agents of
foster care with selling babies and also saw nothing wrong with their orphanages.
These officials needed hard proof that life in their orphanages harmed children.
The researchers also replied that no children were worse-off because of BEIP, that
IRBs at their three institutions approved the study, that the hard evidence proved
by BEIP helped millions of orphans worldwide to leave institutions, and that after
the study finished, Romania banned institutionalization of children under age 2.
Nevertheless, parallels with the Tuskegee Study were striking: Both studies had
a non-treatment group over many years for a comparison, both used vulnerable,
poor subjects who could not leave; both were run by prestigious organizations, and
both were not secret. Moreover, in both studies, researchers claimed the subjects
would not have gotten treatment anyway and that local officials cooperated with
them. Finally, visiting evaluators in BEIP were ordered not to touch the subjects
and, if they started crying, to leave the room, so as to not influence the children.
Critics claimed that in 2001 when BEIP began, substantial evidence already
existed that extreme deprivation harmed the developing human brain. Also, was it
really necessary to leave children in the control group for 12 years? Shouldn’t a stop
rule have been invoked, once it became obvious that deprivation was harming kids
who were controlled? Were children in the control group, in Kant’s terms, treated
as a mere means to scientific knowledge?
Even if it is true that without BEIP, no orphans might have been adopted, once
the researchers included the orphans in their research, didn’t they have any obli-
gations to them? Did Romania get enough benefits from the research? Did Harvard,
and the MacArthur Foundation (which helped fund BEIP), have any obligations to
use their vast endowments to help children in the control group?
Fins believes that some of the greatest abuses occur because no one speaks
truth to power. Is this one of those cases?
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Chapter 9 Medical Research on Vulnerable Populations 217
FURTHER READING
Thomas Benedek, “The ‘Tuskegee Study’ of Untreated Syphilis: Analysis of Moral Aspects
versus Methodological Aspects,” Journal of Chronic Diseases, vol. 31, 1978, pp. 35–50.
James Jones, Bad Blood, New York: Free Press, 1981.
Charles Nelson, Nathan Fox, and Charles Zeanah, Romania’s Abandoned Children: Deprivation,
Brain Development, and the Struggle for Recovery, Cambridge, Mass: Harvard University
Press, 2014.
DISCUSSION QUESTIONS
1. Even if subjects can’t be proven to have been harmed by not getting penicillin
in the 1940s, explain how Kant would say the research was still wrong.
2. Were the studies to prevent vertical transmission of HIV in Africa really like
the Tuskegee Study? What was the same and what differed?
3. Why did the controls of the Tuskegee Study without syphilis also get compensation?
4. Knowledge of the Tuskegee Study has prevented many black patients from
participating in medical research. Is it time now to get over that? If blacks don’t
participate in medical research, will studies be done to help them?
5. Wasn’t Mengele a sadist? Can you do such things just because of ambition?
6. Was the Krieger lead paint study like the Tuskegee Study?
7. What does the model of collaborative research with developing countries imply
about licensing genetic versions of patented drugs for poor areas with HIV,
malaria, and tuberculosis?
NOTES
1. Eugene Kogon, The Theory and Practice of Hell, Berkley Trade, New York, 1998.
2. Vera Alexander, The Search for Mengele, HBO movie, October 1985; interviewed by Central Televi-
sion (London) and quoted in Gerald Posner and John Hare, The Complete Story, Cooper Square
Press, New York, 2000, p. 37.
3. William Curran, “The Forensic Investigation of the Death of Joseph Mengele,” New England Journal
of Medicine 315, no. 17 (October 23, 1985), pp. 1071–1073.
4. David Rothman, “Ethics and Human Experimentation,” New England Journal of Medicine 317, no. 19
(November 5, 1987), p. 1198.
5. Robert Bazell, “Growth Industry,” New Republic, March 15, 1993, p. 14.
6. Constance Pechura, “From the Institute of Medicine,” Journal of the American Medical Association
269, no. 4 (January 27, 1993), p. 453.
7. Rothman, “Ethics and Human Experimentation.”
8. Dan Stober, Knight-Ridder Newspapers, “Dr. Hamilton Was Enthusiastic Experimenter in Radiation,”
Birmingham News, February 20, 1994, p. 10A; “America’s Nuclear Secrets,” Newsweek, December 27,
1993, p. 15.
9. Keith Schneider, “Scientists Are Sharing the Anguish over Nuclear Experiments on People,” New
York Times, March 2, 1994, p. A9.
10. Robert Burns, “Radiation Experiments Were Far-Reaching,” Associated Press, Birmingham Post –
Herald, August 18, 1995, p. E6.
11. Dennis Domerzalski, “Radiation ‘Guinea Pigs’ Tell Stories,” Scripps-Howard News Service, Birmingham
Post-Herald, February 3, 1994, p. A8.
pen07945_ch09_196-220.indd 217 9/8/16 9:51 AM
218 Chapter 9 Medical Research on Vulnerable Populations
12. Philip J. Hilts, “U.S. Is Urged to Repay Some in Radiation Tests,” New York Times, July 17, 1995,
p. A9. See also Final Report, Advisory Committee on Human Radiation Experiments, U.S. Govern-
ment Printing Office, Washington, D.C.
13. H. Beecher, “Ethics and Clinical Research,” New England Journal of Medicine 274 (1966), pp. 1354–1360.
14. H. Pappworth, Human Guinea Pigs, Beacon, Boston, MA, 1968.
15. Arthur Caplan, “Rethinking the Cost of War,” Due Consideration, Wiley, New York, 1998, pp. 123–124.
16. Molly Selvin, “Changing Medical and Societal Attitudes toward Sexually Transmitted Diseases:
A Historical Overview,” in King K. Holmes et al., eds., Sexually Transmitted Diseases, McGraw-Hill,
New York, 1984, pp. 3–19.
17. Alan Brandt, “Racism and Research: The Case of the Tuskegee Syphilis Study,” Hastings Center
Report 8, no. 6 (December 1978), pp. 21–29.
18. Paul de Kruif, The Microbe Hunters, Harcourt Brace, New York, 1926, p. 323.
19. J. E. Bruusgaard, “Öber das Schicksal der nichtspezifischbehandeltenLuetiker” (“Fate of Syphilitics
Who Are Not Given Specific Treatment”), Archives of Dermatology of Syphilis 157 (April 1929),
pp. 309–332.
20. H. H. Hazen, “Syphilis in the American Negro,” Journal of the American Medical Association 63
(August 8), 1914, p. 463.
21. James Jones, Bad Blood, Free Press, New York, 1981, p. 74.
22. Ibid.
23. Ibid.
24. Quoted in E. Ramont, “Syphilis in the AIDS Era,” New England Journal of Medicine 316, no. 25
(June 18, 1987), pp. 600–601.
25. R. A. Vonderlehr, T. Clark, and J. R. Heller, “Untreated Syphilis in the Male Negro,” Journal of the
American Medical Association 107, no. 11 (September 12, 1936), pp. 856–860.
26. Jean Heller, “Syphilis Victims in U.S. Study Went Untreated for 40 Years,” New York Times, July 26,
1972, p. 1, 8.
27. Or worse: in 1988, a malpractice suit brought against a hospital in Vermont was settled out of court
for $2.7 million on behalf of a 28-year-old woman who had gone into a coma after being incompe-
tently tapped by a resident. “Malpractice Suit Settled for $2.7 Million,” Burlington Free Press
(Alabama), December 21, 1988.
28. Archives of National Library of Medicine; quoted in Jones, Bad Blood, p. 127.
29. W. J. Brown et al., Syphilis and Other Venereal Diseases, Harvard University Press, Cambridge, MA,
1970, p. 34.
30. Heller, “Syphilis Victims in U.S. Study.”
31. Ibid.
32. Allison Mitchell, “Survivors of Tuskegee Study Get Apology from Clinton,” New York Times, May
17, 1997, p. A1.
33. Carol Yoon, “Families Emerge as Silent Victims of Tuskegee Syphilis Experiments,” New York Times,
May 9, 1998, p. A1.
34. Marcia Angell, “The Ethics of Clinical Research in the Third World,” New England Journal of Medicine
337, no. 12 (September 18, 1997), pp. 847–849.
35. R. H. Kampmeier, “The Tuskegee Study of Untreated Syphilis” (editorial), Southern Medical Journal
65, no. 10 (October 1972), pp. 1247–1251.
36. Thomas Benedek, “The ‘Tuskegee Study’ of Untreated Syphilis: Analysis of Moral Aspects versus
Methodological Aspects,” Journal of Chronic Diseases 31 (1978), pp. 35–50. I have drawn considerably
on this excellent article.
37. Kampmeier, “The Tuskegee Study of Untreated Syphilis.”
38. “The Deadly Deception” (with George Strait), Nova, January 28, 1992.
39. Benedek, “The ‘Tuskegee Study’ of Untreated Syphilis,” p. 44.
40. Personal correspondence, April 25, 1985. Benjamin Friedman is professor emeritus of medicine,
UAB.
pen07945_ch09_196-220.indd 218 9/8/16 9:51 AM
Chapter 9 Medical Research on Vulnerable Populations 219
41. Benedek, “The ‘Tuskegee Study’ of Untreated Syphilis.”
42. G. W. Hayes et al., “The Golden Anniversary of the Silver Bullet,” Journal of the American Medical
Association 270, no. 13 (October 6, 1993), p. 1610.
43. R. H. Kampmeier, “Final Report of the ‘Tuskegee Study’ of Syphilis,” Southern Medical Journal 67,
no. 11 (1974), pp. 1349–1353. Kampmeier advances a fourth argument that is somewhat more
technical. Penicillin achieves seroreversal in latent syphilis, but Kampmeier insists that such seror-
eversal has never been proved to be associated with decreased morbidity or mortality. A related
point is possible uncertainty over diagnosis and thus over therapeutic effects. (S. Edberg and
S. Berger, Antibiotics and Infection, Churchill Livingstone, New York, 1983, pp. 141–142; K. Holmes
et al., Sexually Transmitted Diseases, McGraw-Hill, New York, 1984, p. 1352; John Hotson, “Modern
Neurosyphilis: A Partially Treated Chronic Meningitis, Western Journal of Medicine 135 [September
1981], pp. 191–200; Sarah Polt, Professor of Pathology, UAB, personal correspondence.)
44. Benedek, “The ‘Tuskegee Study’ of Untreated Syphilis.”
45. Ibid.
46. Sheryl Gay Stolberg, “U.S. Ends Overseas HIV Studies Involving Placebos,” New York Times,
February 19, 1998.
47. Marcia Angell, “Tuskegee Revisited,” Wall Street Journal, October 28, 1997.
48. Ruth Macklin, “Ethics and International Collaborative Research, Part I,” American Society for Bio-
ethics and Humanities Exchange 1, no. 2, p.1. Reprinted in Ruth Macklin, Ethics in Global Health,
Oxford University Press, 2012.
49. Ellen Goodman, 2006. “Is Tuskegee Study OK Abroad?” The Boston Globe, September 25, 1997.
50. Ibid.
51. D. Bagenda and P. Musoke-Mudido, “We’re Trying to Help Our Sickest People, Not Exploit Them,”
Washington Post, September 28, 1997, p. C3.
52. Macklin, “Ethics and International Collaborative Research.”
53. Marcia Angell, “Tuskegee Revisited,” Wall Street Journal, October 28, 1997.
54. Goodman, “Is Tuskegee Study OK Abroad?”
55. Stolberg, “U.S. Ends Overseas HIV Studies.”
56. Manuel Roig-Franzia, “Probe Opens on Study Tied to Johns Hopkins,” Washington Post, August 23,
2001, p. B1.
57. Tamar Lewin, “U.S. Investigating Johns Hopkins Study of Lead Paint Hazard,” New York Times,
August 24, 2001.
58. Grimes v. Kennedy-Krieger Institute, 782 F2d 807 (Ct App Md 2001). (Maryland Court of Appeals,
2001, no. 128, September Term, 2000.)
59. Ronald McNeil, “Panel Hears Grim Details of V.D. Test on Inmates,” New York Times, August 31,
2011, p. A21; A Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948,
Presidential Commission for the Study of Biomedical Issues, November 2012, http://www.bioethics
.gov.
60. Rick Weiss, “Research Volunteers Unwittingly at Risk,” Washington Post, August 1, 1998, p. A1. See
also this article from the online journal Target Health: Target Health, June 14, 1998, http://www.
targethealth.com/.
61. Institute of Medicine, Responsible Research: A Systems Approach to Protecting Research Participants,
National Academy Press, Washington, D.C., 2002.
62. For psychiatrists who abused patients in psychiatric research on schizophrenic patients, see Robert
Whitaker, “Lure of Riches Fuels Testing,” Boston Globe, November 17, 1998, p. A1; for another story
about abuse of subjects and fraud in medical research, see Douglas M. Birch and Gary Cohn, “How
a Cancer Drug Trial Ended in Betrayal,” Baltimore Sun, June 24, 2001.
63. Steve Stecklow and Laura Johannes, “Drug Maker’s Relied on Clinical Researchers Who Now Await
Trial,” Wall Street Journal, August 15, 1997, p. A1.
64. The Olivieri Report: The Complete Text of the Report of the Independent Inquiry Commissioned, Canadian
Association of University Teachers, Lorimer, 2001; Miriam Shuchman, The Drug Trial: Nancy Olivieri
and the Science Scandal that Rocked the Hospital for Sick Children, Random House, New York, 2005.
pen07945_ch09_196-220.indd 219 9/8/16 9:51 AM
http://www.bioethics.gov
http://www.bioethics.gov
http://www.targethealth.com/
http://www.targethealth.com/
220 Chapter 9 Medical Research on Vulnerable Populations
65. The Olivieri Report.
66. Harold Shapiro and Eric Meslin, “Ethical Issues in the Design and Conduct of Clinical Trials in
Developing Countries,” New England Journal of Medicine 345 (July 12, 2001), pp. 139–142.
67. George Annas, “Global Clinical Trials and Informed Consent,” New England Journal of Medicine 360,
no. 20 (May 14, 2009), pp. 2050–2053.
68. See author’s Elements of Bioethics, Chapter 8.
69. Carl Elliot, White Coat, Black Hat, Beacon Press, Boston, MA, 2010, p. 60.
70. Personal communication to author from Michael Saag, MD, head of UAB AIDS research unit.
71. Ilesh Jani and Treveror Peter, “How Point of Care Testing Could Drive Innovation in Global Health,”
New England Journal of Medicine 368, no. 24 (June 13, 2013), pp. 2319–2324.
72. A conference in 2002 first described this model: files/4314/3472/9176/me-10-fair-benefits-for-
research .
73. http://www.recerca.uab.es/ceeah/docs/CIOMS .
74. Richard Jerome, “Death by Research,” People, February 21, 2000, p. 123.
75. Deborah Nelson and Rick Weiss, “Hasty Decisions in the Race to a Cure? Gene Therapy Proceeded
Despite Safety, Ethics Concerns,” Washington Post, November 21, 1999, p. A1.
76. Arthur Caplan is quoted extensively in Complaint for Civil Action filed by John Gelsinger for estate
of Jesse Gelsinger against Trustees of University of Pennsylvania et al., www.sskrplaw.com/links/
healthcare2.html.
77. Nelson and Weiss, “Hasty Decisions.”
78. Charles Nelson, Nathan Fox, and Charles Zeanah, Romania’s Abandoned Children: Deprivation, Brain
Development, and the Struggle for Recovery, Harvard University Press, Cambridge, MA, 2014.
79. Joseph Fins, “Romanian Orphans: A Reconsideration of the Ethics of the Bucharest Early Intervention
Project,” Bioethics Forum, October 10, 2013.
pen07945_ch09_196-220.indd 220 9/8/16 9:51 AM
http://www.recerca.uab.es/ceeah/docs/CIOMS
www.sskrplaw.com/links/healthcare2.html
www.sskrplaw.com/links/healthcare2.html
This chapter describes ethical issues in the race to be the first to transplant a
human heart, implant an artificial heart, and perform hand and face transplants.
THE FIRST HEART TRANSPLANT
In 1966, two American surgeons, Richard Lower of Virginia and Norman Shumway
of Stanford University, had been trying for years to overcome the immune system’s
rejection of another person’s heart.
After spending a decade transplanting hearts in dogs, Shumway announced on
November 20, 1967, that he was now ready to transplant a heart and actively sought
a suitable candidate and donor.1
Two weeks later, Christiaan Barnard, an unknown South African surgeon, trans-
planted a human heart on December 3, 1967, in Cape Town, but before he knew
how to control rejection.
Barnard grew up in South Africa and attended medical school there. Between
1955 and 1957, he did a fellowship under famous surgeon Owen Wangansteen in
Minneapolis-Saint Paul. When Barnard returned to South Africa in 1967, Wan-
gansteen gave him a heart-lung machine, expecting him to transplant kidneys.2
Until surgeons overcame the problem of immune rejection, no one expected hearts
to be transplanted.
However, Barnard had secretly decided to try to transplant a human heart. With
his physician-brother Marius, he quietly assembled a team at Groote Schuur Hos-
pital in Cape Town.
In 1967, Louis Washkansky, aka “Washy,” suffered from end-stage cardiac dis-
ease. He had diabetes, coronary artery disease, and congestive heart failure; his
flabby heart extended across the inside of his large chest, from wall to wall.
C H A P T E R 1 0
Ethical Issues in First-Time
Organ Surgeries
The First Heart Transplant, Artificial Heart; The First
Face, Hand, and Uterine Transplants
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222 Chapter 10 Ethical Issues in First-Time Organ Surgeries
As a young man, Washy had been a weightlifter and amateur boxer. A big,
intelligent man with a ferocious desire to live, he had an exuberant, macho person-
ality and liked to flirt with nurses.
Knowing that death approached and that his last two years had been hellish,
when approached about the transplant, he did not hesitate. Barnard told him, “We
can put a normal heart into you, after taking out your heart that’s no longer good,
and there’s a chance you can get back to normal life.” Washy replied, “So they told
me. So I’m ready to go ahead.”
After obtaining Washy’s permission, Barnard waited three weeks for a donor.
Meanwhile, Washy developed fulminant pulmonary edema—a sign of imminent
death—and Barnard feared his chance would pass.
In California, Shumway also waited for the right patients and had to be espe-
cially careful that any donor was dead because brain death had not yet been legally
defined. In Richmond the next year and when Virginia lacked any brain death
statute, Richard Lower narrowly missed criminal conviction for taking the heart of
an African-American man for transplant.
On December 2, 1967, as she walked with her mother to a bakery a half mile
below Groote Schuur, a speeding car smashed into 25-year-old Denise Ann Darvall.
The accident crushed her head, and a few minutes later, an ambulance took her up
to Groote Schuur’s emergency room. While driving up the mountain to visit her
husband, Washy’s wife passed the accident.
Shortly after Denise’s arrival, Barnard spoke to Edward Darvall, who had just
learned of his daughter’s death. “We have a man in the hospital here, and we can
save his life if you give us permission to use your daughter’s heart. …” Edward
replied, “If you can’t save my daughter, try and save this man.”
Denise Darvall was declared dead after her heart had stopped beating; surgeons
then opened her body, preparing it for Barnard’s excision. In an adjacent room, surgeons
gave Washkansky drugs to produce paralysis and to prevent spontaneous breathing.
They then placed him on the heart-lung machine that had come from Minnesota.
The operation took place during the early hours of December 3, 1967. At this
point, everything almost failed. Washkansky’s femoral artery, where a tube was
attached, had been narrowed by buildup of cholesterol and the machine couldn’t
force blood into his heart. The pressure on the tube climbed to 290 mmHg, just
below the point where the lines would blow, spilling liters of blood over the room.
Barnard and other surgeons frantically reattached the line directly to Washkansky’s
aorta. Gradually, the pressure dropped.
Barnard walked to the next room and excised Denise Darvall’s heart, leaving
part of the wall attached to it like the lid of a jack-o-lantern. He put her heart into
a basin of chilled fluid and walked 31 steps back to Washkansky’s operating room,
where he gave the heart to a nurse to hold. Barnard then cut out Washkansky’s
flabby heart. Peering down into Washkansky’s empty chest cavity, he said, “This
really is the point of no return.”3
He next sewed Denise Darvall’s heart with its attached wall into Washkansky’s
chest, where it looked small. After some false starts, the new heart started to beat.
After working all night, the surgeons finished the operation at 7 am on December
3. An hour later, Washy regained consciousness and tried to talk. Thirty-six hours
later, he ate a soft-boiled egg.
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 223
He then had five rough days, when his urine output, enzymes, and heart rate
seemed problematic. Worried about immunological rejection of the heart, Barnard
flooded Washy with gamma ray radiation and administered the immunosuppressive
drugs prednisone (steroids) and azathioprine, but Louis didn’t tolerate them well.
By day five, he said, the constant tests were “killing me. I can’t sleep. I can’t do
anything. They’re at me all the time with pins and needles. It’s driving me crazy.”4
On the sixth day, Louis received more steroids to prevent rejection, and this
began five good days when he laughed, visited his family, and wanted to go home.
At this time, Barnard told a press conference that if his patient’s progress held, he
would “have him home in three weeks.”5
These five days were the eye of the hurricane because rejection soon started;
Washy then felt terrible. He suffered from constant pain in the shoulders; dark circles
formed under his eyes; his heart and breathing rates climbed; a shadow of unknown
origin appeared on his lung X-ray. Soon this vibrant, forceful man became sullen and
irritable.
In addition to the threat of rejection, dangers of infection loomed. At the time,
most post-transplant symptoms could indicate either rejection or infection; treat-
ment of one problem could exacerbate the other. Risking Washy’s death, Barnard
waited for a definitive diagnosis.
By the 14th day, Washkansky felt he was dying. He couldn’t eat. He lost bowel
control. He had such severe pain in his chest that he preferred to lay in his own
feces than try to move. Barnard said that he was “constrained” to insert a nasoga-
stric tube to feed his patient, but Washkansky didn’t want it. To him, he didn’t feel
he would ever be normal again; he had lost his dignity and his will to live.
On the 15th day, mottled patches appeared on Washkansky’s legs, indicating circu-
latory failure. He breathed with difficulty, and X-rays showed ominous patches on his
lungs. As he gasped for breath, Barnard decided to place him on a respirator. Washkansky
resisted. He had been on the respirator when he first woke up after the operation, and
he knew that reconnecting it meant giving up speech. He also felt that he was near death.
Barnard disagreed; on December 18, he told Washkansky that there was “a
chance” to be home by Christmas. Washkansky replied, “No, not now.” His bed
was in a sterile tent, and despite his extreme weakness, he grabbed its sides to
prevent Barnard from entering to reopen his tracheotomy hole.
As Barnard entered, Washkansky persisted, saying, “No, Doc.”
Barnard replied, “Yes, Louis,” and put him on the respirator.6 Washkansky
never spoke again.
On December 19, new X-rays now showed that bilateral pneumonia—klebsiella
and pseudomonas—had infiltrated Washkansky’s lungs. Earlier treatment with pen-
icillin had killed one organism but allowed others to grow. Barnard had guessed
wrong: The immunosuppressants had allowed all these organisms to flourish.
On December 20, 17 days after the operation, Washy received 40 percent oxy-
gen; then, as his breathing worsened, 100 percent. By day 18, infection overran his
lungs and he suffocated.
After two hours of Washkansky’s dying gasps, the transplanted heart went into
wild fibrillation from lack of oxygen and stopped beating, but Barnard would not
give up; he rushed a team together to put him on a heart-lung machine. Marius
then screamed that it was “madness” to continue because Washkansky was
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224 Chapter 10 Ethical Issues in First-Time Organ Surgeries
“clinically lost.” Reluctantly, Barnard agreed. On December 21, after having lived
18 days with a transplanted heart, Louis Washkansky died.
Meanwhile, a white, dying dentist, Philip Blaiberg, waited for a heart transplant.
Nevertheless, when invited to fly to America and to be on television, Barnard aban-
doned Blaiberg and the chance to build a cardiac unit of international quality. He
skipped Washy’s funeral to meet American President Lyndon Johnson and his face
graced the cover of Time magazine.
Later back home, he transplanted a black heart into Blaiberg, who walked out
of the hospital on his own and thus was considered a real success.
Fame Cometh
Perhaps no physician will ever again get the kind of coverage by television, maga-
zines, and newspapers that then came in 1968 to Barnard. Long before people
talked of superstars, Christiaan Barnard became one. After 20 years of marriage,
he soon divorced his first wife, Loki, who told reporters, “He was more famous than
the Beatles and he loved it.”7
Tall, physically fit, witty, worldly, ambitious, and lusty, he looked younger than
his age. In his two autobiographies, he brags about bedding beautiful women,
including actress Gina Lollobrigida. He admits that fame ruined his marriages to
Loki, to a 19-year-old model in 1970, and at age 60 to a 19-year-old waitress who
bore him two children before leaving.
In 1967, he had the beginnings of crippling arthritis and soon could no longer
operate. In 1984, he took $4 million for saying that a facial cream named “Glygel”
reverses aging in skin (it doesn’t), for which he was expelled from the American
College of Surgeons and a cardiology society. In 2001, he died of an asthma attack,
alone at age 78 at a swimming pool in Cyprus, lured there in hopes of signing a
contract for an olive oil bearing his name.
Barnard’s fame influenced surgeons far more than his surgery. As journalist
Donald McRae writes, “Which red-blooded cut-master among [surgeons] would not
wish to bed Gina Lollobrigida, lunch with Sophia Loren, and then have Gregory
Peck suggested as the perfect actor to play him on the big screen.”8
In Plato’s Republic, Glaucon relates the story of the ring of Gyges, a ring that
made its wearer invisible. When Gyges found it, he killed the king, married the
king’s beautiful wife, and became king himself. The moral of Socrates’s story is that
when luck gives someone the opportunity to do anything he wants, that person’s
true character emerges. In Gyges’s case and in Barnard’s case, the character that
emerged was flawed.
The Post-Transplant Era: “Surgery Went Nuts”
Following Barnard’s success with Blaiberg, surgeons around the world went wild
trying to transplant hearts. Magazines called 1968 the “Year of the Transplant.”
During that year, 105 hearts were transplanted. Of the 104 heart-transplant patients,
19 died on the operating table, 54 lived for 1 month, 10 lived for 2 years, and the
rest died. Of 55 liver transplants in 1968 and early 1969, in 15 months after Barnard’s
landmark operation, 50 of the patients failed to live even six months. These early
transplants failed because the immune system rejected the organs.
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 225
Most reporters also missed the fact that in 1968, 25 percent of transplant
recipients became not just depressed or irritable but temporarily psychotic. Massive
dosages of immunosuppressive drugs produced initial euphoria, followed by
catatonia, severe depression, hysterical crying, and even permanent psychosis.
Few deaths could be more undesirable than as a psychotic patient in a post –
operative bed.
One of the great figures of modern medicine, Francis Moore, chief surgeon at
Brigham and Women’s Hospital for three decades, says that the year 1968 saw
“epidemics” of chauvinism and of surgeons’ egos.9 He says, “It was the only example
I know in the history of transplant medicine where everyone went nuts.”10 Nobel
Prize winner (1954) Andre Cournand of Columbia University called Barnard’s oper-
ation a stunt, “Merely demonstrating that it is technically feasible” to transplant a
human heart, he said, was unethical.11 Physician Norman Staub said Barnard’s oper-
ation was “grandstanding,” a blatant grab for fame.12
Many cardiac surgeons criticized heart transplantation with reason. In animals
or humans, heart transplants rarely lasted more than a month, let alone years, and
the death rate in early heart transplants appalled knowledgeable observers. While
1968 may have been the “year of the transplant,” the following two years were the
years of transplanted patients dying in madness and agony.
Because of poor results, the Montreal Heart Institute in 1969 suspended heart
transplants, followed by suspensions at Harvard and Pittsburgh. Despite pressure
to do so, surgeon John Kirklin at University of Alabama at Birmingham (UAB)
refused to start them in the first place. Threatened with congressional action, by
1970, most surgeons stopped transplanting.
BARNEY CLARK’S ARTIFICIAL HEART
Barney Clark practiced dentistry in Utah for decades. A Latter-Day Saint, he smoked
cigarettes for 30 years.
After several years of feeling unwell, in 1978 at age 57, he was diagnosed with
emphysema, an incurable, obstructive lung disease, and cardiomyopathy, a disease
where the heart muscles weaken and quit pumping blood. Too late, he quit
smoking.
Over the next four years, powerful drugs dilated his blood vessels and kept him
alive, but by November 1982, he was dying. Initially scoffing an artificial heart,
approaching death gave him a new perspective and he decided to go for it.
For two decades at the University of Utah in Salt Lake City, physician Willem
Kolff had been working on an artificial heart. In many ways, Kolff’s career symbol-
izes the pros and cons of the desire to achieve a medical breakthrough.
In 1943, Kolff invented the first hemodialysis machine in the Netherlands. He
converted a fuel pump from an automobile to force blood through a semipermeable
membrane to clean it before it returned to the body. His first patient, a woman who
had belonged to the Nazi party during World War II, lived a few days. Unlike modern
dialysis machines, his machine could not sustain patients indefinitely because each
time it was used, physicians had to make new connections between arteries and veins
for its cannulas. Only in 1960, when Belding Scribner of Washington invented a
permanent indwelling shunt, could dialysis sustain patients for years (see Chapter 11).
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226 Chapter 10 Ethical Issues in First-Time Organ Surgeries
Despite the simplicity of his machine, the world lauded Kolff as a genius and
man of vision. Dubbed the “Father of Artificial Organs,” Kolff received fame, hon-
orary doctorates, and the Lasker Award for medical research. At Utah, he got his
own research lab and didn’t need to see patients to make a living. No wonder others
emulated him.
In 1985, 40 years after inventing the dialysis machine, Kolff paired with Robert
Jarvik, an ambitious young medical student whom Kolff got into Utah’s medical
school. After two years of medical school, Jarvik went to work in 1971 in Kolff’s
lab, graduated medical school in 1976, but never did a residency and was never
licensed to practice medicine. Jarvik modestly named the first artificial heart after
himself.
Another doctor who wanted to make medical history, William DeVries, looked
the part: 36 years old, he was a tall, blond-haired Nordic man with a lean, tanned
face. Because of his rugged good looks and macho manner, reporters lionized him
as a surgical John Wayne.
The Implant
In a heart, the powerful, lower two chambers of the ventricles pump blood. The
Jarvik-7 consisted of molded polyurethane, with two chambers of plastic and alu-
minum holding an inner diaphragm. A wall of thin membrane separated these
chambers, through which the diaphragm’s contraction forced blood. An air com-
pressor moved the diaphragm, brought by 6-foot tubes inserted through the upper
abdomen. The compressor weighed 375 pounds and rolled around on wheels on a
large metal cart.
The Jarvik-7 contained the same commercial valves used by heart surgeons, and
as in a natural heart, so there were four of them (analogous to mitral, tricuspid,
etc.).
DeVries operated on Barney Clark on December 1, 1982, almost 15 years to the
day after Washkansky’s transplant. On his way to the operating room, Clark joked,
“There would be a lot of long faces around here if I backed out now.”13
Upon opening the chest, DeVries found a flabby, enlarged heart. Twice the size
of a normal heart, it merely quivered and didn’t contract. One physician there
described it as looking like “a soft, overripe zucchini squash.” DeVries first cut away
the lower part of the heart, the two ventricles; then he stitched two Dacron cuffs
to the intact upper part, the atria. After using Velcro fasteners to connect Jarvik-7’s
plastic ventricles, the pressure of the pumped blood ripped out the stitches from
Clark’s paper-thin, atrial walls. DeVries then had to restitch the cuffs to a new
section of heart wall and resnap the fasteners.
The cuffs then held, but when DeVries turned on the Jarvik-7, its plastic left
ventricle didn’t pump blood. Frustrated, DeVries tried for an hour to get it to work.
Three times he opened the ventricle by hand, each time risking introduction of air
into the blood and a stroke. At one point, DeVries reportedly exclaimed, “Please,
please, please work this time!”14
DeVries finally replaced the faulty Jarvik-7 with parts from another one and got
the rebuilt machine working, two hours late. The implant took all night and con-
cluded about 7 am on December 2. A heart-lung machine maintained Clark during
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 227
this 10-hour operation, subjecting him to huge losses of memory from being under
anesthesia so long and to stroke-causing clots.
About 10 am on December 2, the anesthesia wore off and DeVries watched
anxiously to see how Clark had fared. If he had had a stroke, Clark wouldn’t be
able to move his hands, so when Clark moved his hands, everyone felt relieved.
At a press conference, university physicians falsely described the operation as
a “dazzling technical achievement,” something “as exciting and thrilling as has ever
been accomplished in medicine.” Hospital administrators also called it “one of the
most dramatic stories in medical history.”
Back in the recovery room, Clark’s condition, like that of most patients after
serious cardiac surgery, shocked his wife, Una Loy. She saw a man pierced by five
tubes: a breathing tube ran a hole in his throat, a feeding tube went into his stom-
ach, a catheter emptied his bladder, and the two hoses connected the Jarvik-7
thumping through his upper abdomen to the 375-pound air compressor at his bed-
side. If she had pressed her ear to her husband’s chest, she could have heard the
valves’ clicking as they opened and closed.
Like Louis Washkansky after his operation, Clark felt horrible. Though he had
not suffered a massive stroke, he had experienced intensive care psychosis and felt
confused, was delirious and amnesiac, and, at times, was unconscious.
On December 4, DeVries operated to repair ruptured air sacs in Clark’s lungs. On
December 6, Clark felt better and asked DeVries how he was doing. DeVries replied,
“Just fine.” Seconds later, Clark had seizures—involuntary shuddering from head to
toe—perhaps caused by the dramatic increase in blood flow from the Jarvik-7.
DeVries injected muscle tranquilizers and anticonvulsants. Clark lost conscious-
ness for the next several hours and his seizures continued, though gradually the
quivering became confined to his left leg and left arm. At this point, he had several
small strokes. Throughout the next months, he continued to be confused.
During the following days, Clark asked DeVries directly, “Why don’t you just
let me die?”15 Clark’s lack of energy, difficulty in breathing, and stupor depressed
him; he told a psychiatrist several times, “My mind is shot.”
On December 14, one of the $800 welded commercial valves broke inside the
Jarvik-7. Clark’s blood pressure dropped dramatically, threatening his life, and
DeVries had to operate yet again to replace the valve. Each of these operations and
anesthesias subjected Clark to more memory loss and more strokes.
Nineteen days after the operation, Clark improved, and DeVries hinted he
might one day go home, but soon massive complications began. DeVries gave Clark
a blood thinner to prevent clots, but it caused severe bleeding. On January 18,
DeVries surgically sealed a severe nosebleed. Clark’s underlying emphysema created
pneumothorax, escape of air from lungs into the chest cavity, which required
DeVries to operate yet again to relieve pressure on Clark’s weak lungs.
From January to March, Clark continually complained of conditions caused by
his emphysema. He was suffocating and could never get a good breath. On February
14, he left the surgical ICU for a private room, but because he needed a respirator,
he returned to the ICU the next day.
On February 24, he moved again to a private room and had a good week. On
March 1, DeVries filmed several interviews with Clark. On March 2, Humana Hos-
pital released a short, highly edited clip to the public. According to cardiologist
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228 Chapter 10 Ethical Issues in First-Time Organ Surgeries
Thomas Preston, this clip “came from an extensive interview in which, encouraged
by Dr. DeVries, Clark issued a semblance of a positive statement.”16 Although the
clip showed his best moment, even then, tethered to a huge machine, in pain, and
not fully alert, Clark looked miserable.
The next day he developed severe nausea, aspirated vomit, contracted pneumo-
nia, and ran a high fever. On March 21, his kidneys failed. On March 23, 1983,
having lived 112 days with an artificial heart, Barney Clark died. Inside his body,
after someone “called” the death, the Jarvik-7 continued to pump. Asked if she
wanted to be present when DeVries turned off the Jarvik-7, Una Loy Clark said,
“He’s already dead,” and left the room.17
Following Clark’s death, public opinion varied. Some people called the opera-
tion “one of the boldest human experiments ever attempted”; others concluded that
it had failed to prove its worth and that even if it had returned Clark to normal, it
cost too much, both in money and suffering.
Predictably, Kolff defended the project, “A number of doctors were opposed to
the artificial kidney and wrote articles against it. I decided not to respond at all. …
I still have the same policy now for people [who] tell us that the artificial heart has
no future.”
DeVries surprisingly commented, “After the first two days, 95 percent of the
issues we were dealing with concerned ethics, moral value judgments, communica-
tions with the press—problems I had never thought about.”18
A few weeks after Clark died, the hospital disclosed that a valve had broken
and killed Ted D. Baer, a 220-pound ram who had lived 297 days with a Jarvik-7.
This was the most important model for the Jarvik-7 in a human, and the hospital
had suppressed this lack of success. Heart surgeons understood this failure: Even
if Clark had lived a few more months, breaking valves would have killed him.
This is an important point for bioengineering students. Unlike hemodialysis, in
which the machine can fail and the patient lives on by getting another machine,
the challenge of creating a totally implantable artificial heart, such that patients
could pass the “walk-on-their-own-out-of-the-hospital” test, is that the mechanical
heart needs to be flawless, subject to no breakdowns, interruptions, or failures.
Otherwise, when problems arise with patients with artificial hearts outside the
hospital, they will immediately die.
Post-Clark Implants
At Humana, on November 25, 1984, nearly two years after Barney Clark’s operation,
DeVries implanted a second Jarvik-7 into William Schroeder.
“Bionic Bill,” age 51, younger and healthier than Clark, had no emphysema.
Not surprisingly, he lived much longer than Clark, 21 months. But his quality of
life suffered. Only 19 days after his operation, he suffered a stroke from a clot.
Schroeder then had a cascade of strokes, repeated bouts of endocarditis, and even-
tually underwent a tracheotomy. On August 6, 1986, he suffocated to death.
On February 17, 1985, Murray Haydon received the third Jarvik-7. On the 17th
day after the implant, he needed a tracheotomy. He experienced various infections
and lived poorly for 10 months. His autopsy revealed that a hole from a catheter in
part of his natural heart wall had not healed, allowing blood to pour into his lungs.
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 229
The fourth recipient, Jack Burcham, had a dreadful death. Going into surgery
on April 16, 1985, Burcham thought he had nothing to lose by going for the implant,
but he was wrong. During the operation, DeVries made the amazing discovery that
the Jarvik-7 wouldn’t fit inside Burcham’s chest. When Burcham left the operating
room, “his chest, draped with sterile dressing … [was] only partly closed around
the device.”19
Can a surgeon really take out a man’s heart and not measure in advance
whether a mechanical heart will fit inside? This is in the same territory as ampu-
tating a patient’s leg rather than his diseased hand.
Burcham lived only 10 days. Afterward, DeVries admitted that surgery short-
ened Burcham’s life.20
Three years later in 1988, after a long dispute, William DeVries left Humana
Heart Institute. Divorcing his wife of 24 years, he moved to Humana Hospital in
Louisville, Kentucky, a for-profit center where he hoped for a freer hand and was
paid three times his former salary.
Over the next four years, he left three different surgery practices around Lou-
isville before starting a risky solo practice in 1992. But because they saw only mis-
erable outcomes, grandstanding, and obliviousness to clinical realities, physicians
didn’t refer patients to him. He still claimed that Jarvik-7s could work, but few
believed him. Lacking referrals, he had no patients into which to implant
Jarvik-7s.
William DeVries struggled as a cardiac surgeon between 1992 and 1999 and
then retired. In 2001, at age 57, he joined the U.S. Army Reserve and completed
the Officer Basic Course. He now teaches surgical residents at the Uniformed Ser-
vices University of the Health Sciences in Washington, D.C.
After Barney Clark’s death, Robert Jarvik modeled Hathaway shirts in ads and
gave interviews to Playboy, with whom he discussed his sex life. In 1988, he divorced
his wife of decades and, after having known her for only five days, married a col-
umnist who calls herself Marilyn Vos Savant (“Marilyn the wise” in French). Billing
themselves as “the world’s smartest couple,” Jarvik and Vos Savant say their chil-
dren from previous marriages are their children “only in the biological sense.” Mar-
ilyn once added, “I don’t consider either of us to have children.”21 She writes a
weekly column for Parade magazine.
In 2006, Jarvik reappeared in television ads for Lipitor, rowing across the screen
(he does not row and a body double was used). He later admitted that he had not
started taking Lipitor until paid to do its ads. In the intervening years, he founded
Jarvik Heart, a small company developing not an artificial heart but a cardiac
pump.22
Willem Kolff died at age 97 in 2009, lauded for his work in creating successful
hemodialysis, but without success in creating a successful artificial heart, eye, or ear.23
LIMB AND FACE TRANSPLANTS
In 1998, surgeon Jean-Michel Dubernard performed the first hand transplant in
France. The hand came from a 41-year-old man who had died in a motorcycle acci-
dent and went to 48-year-old New Zealander Clint Hallam. A year later, Louisville’s
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230 Chapter 10 Ethical Issues in First-Time Organ Surgeries
Jewish Hospital did the first hand transplant in America on 38-year-old Matthew
Scott, who lost his hand to a firecracker.
In 2001, Clint Hallam demanded that Dubernard amputate his transplanted
hand. He felt pain and had no normal feeling in it. Because the antirejection drugs
gave him diarrhea and influenza, Hallam had not taken them. He also ducked his
required physical therapy.
In contrast and within a few months, Matthew Scott began to feel cold and heat
in his palm as nerve growth reached his wrist. With his new hand, he could write
his name, tie his shoelaces, and wear a new wedding ring. In January 2006, Scott
had had his hand for six years. In an amazing video (posted on YouTube), Scott can
later be seen throwing out a pitch at a baseball game.
In another case, which should have been front-page news in ethics, surgeons
in South Africa considered but declined to try to be first in transplanting fingers
in children.24 Citing the significant dangers of taking immunosuppressive drugs
over many decades, which include cancer, hypertension, opportunistic infections,
and diabetes, the surgeons decided that the children might be able to adapt easier
and live better without the transplanted digits.
In 2008, Karl Merk, a German dairy farmer who lost both his arms in a corn
threshing machine, received the world’s first double-arm transplant.25
In 2009, Jeff Kepner, whose hands and feet were amputated after a streptococcal
infection, became the first American to receive a double-hand transplant at the
University of Pittsburgh by a team led by W. P. Andrew Lee. Before the transplants,
he had used prosthetics and worked part-time at a Borders bookstore. A year after
having the hand transplants, he had no control over his fingers and was frustrated
by his slow progress in using his hands.
In 2010 and after she gave birth to a child, Texan Katy Hayes developed a Group
A streptococcal infection that resulted in amputations of her arms above her elbows.
Hayes received the first double-arm transplant in the United States, led by Dr. Simon
Talbot of Brigham and Women’s Hospital.26
By 2006, surgeons around the world had completed 30 hand-forearm trans-
plants, including three in Lyon, France.27 (In a video on YouTube, a successful
patient after a double-hand transplant can be seen threading a needle.) Double
amputees reported the best psychological results. All patients survived, and after
two years, none had rejected their new limbs. All had to endure immunosuppres-
sant therapy, including steroids. Despite taking these medications, 12 had acute
rejection episodes.28
In the early 2000s, history repeated itself as experienced surgeons around the
world prepared to do the world’s first face transplant, only to be startled when an
unknown surgical team in France beat them. American surgeon Maria Siemionow
of the Cleveland Clinic had been preparing for 20 years to do a face transplant and
in April 2005 had been given permission by her Institutional Review Board (IRB)
to go ahead.29
But in France in 2005, Jean-Michel Dubernard, the surgeon who had trans-
planted hands onto Clint Hallam seven years before, yearned for another victory
before his upcoming mandatory retirement. In 2005, Isabelle Dinoire, an unem-
ployed, divorced mother of two teenage daughters living in government housing,
attempted suicide by taking sleeping pills, which caused her to pass out.30 While
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 231
unconscious, her newly acquired black Labrador Retriever bit off her nose, chin,
mouth, and supporting facial muscles (the dog later was inadvertently destroyed).
After several months in the hospital, Ms. Dinoire returned home. When out-
side, she wore a surgical mask. Without the mask, as she tried to talk, people could
see her jawbone move.
At the university hospital in Amiens and at Dubernard’s urging, Dr. Bernard
Devauchelle, the head of maxillofacial surgery, decided to transplant onto Dinoire
a triangular flap of a brain-dead cadaver’s chin, nose, and mouth.31
Dr. Devauchelle had already identified a potential candidate in a hospital in
Lille, Maryline St. Aubert, who had committed suicide by hanging and who was
brain-dead. Importantly, the hanging may have damaged St. Aubert’s facial veins
and muscles. (Devauchelle claimed he did not know that St. Aubert had died by
hanging.) He cut a triangle of facial tissue from St. Aubert, put it on ice, and then
sewed it onto Dinoire.
Following the surgery, Devauchelle turned over Dinoire’s care to Dubernard.
Dr. Thomas Starzl, who performed the world’s first liver transplant, said of Duber-
nard, “There’s a big brain behind him and steely will to confront massive
criticism.”32
Dubernard, a former deputy mayor of Lyon, also served as an elected deputy
in the French National Assembly. A self-described workaholic and chain smoker,
Dubernard commuted from Lyon two days a week to Parliament and on other days
doctored back in Lyon. Like Christiaan Barnard, he confessed to loving international
publicity and to wanting a huge “first.”
As we know from nearly 50 years of transplants, the key to success is preventing
rejection of the transplanted tissue, not the surgery. Through a steady treatment of
immunosuppressants, as well as use of hematopoietic stem cells from Dinoire’s face
and bone marrow, Dubernard tried to prevent her immune system from rejecting
the new tissue. After a week, she could speak and drink.
In 2006, Dinoire resumed smoking, which jeopardized the healing and stability
of her transplant by constricting blood vessels and increasing chances of infection.
The same year, surgeons disclosed that the donor’s face lacked a key nerve that
controlled the lower portion of Dinoire’s face. That same year in a visit to UAB,
Dubernard revealed to this author that in the first weeks after the operation,
he feared each phone call might tell him that the transplant had fallen off his
patient’s face.33
In 2007, Dubernard revealed pictures and video of Dinoire, who reportedly
consented to this release. She looked much better than expected and was said to
be satisfied with the results. Dubernard pronounced the surgery perfect and said
her new face looks like, and moves like, her old face.34
In 2006, Chinese surgeons in Xi’an attempted a copycat 14-hour operation,
transplanting two-thirds of the face of a man mauled by a bear.35 When the opera-
tion occurred, the patient had been living as a recluse for two years.
French surgeons performed another face transplant in 2007 on Pascal Coler,
who suffered from neurofibromatosis, which disfigured his face with large tumors.
He suffered a life that is reminiscent of Quasimodo and felt himself a freak.
At the Cleveland Clinic in America, Dr. Maria Siemionow emphasized, “First,
do no harm.” She said, “The thing I’m worried about is, if it fails, what I’m going
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232 Chapter 10 Ethical Issues in First-Time Organ Surgeries
to be left with.” Siemionow’s protocol required good health, good personality, and
good family support, none of which Isabelle Dinoire had.
In 2008, Siemionow performed the first American face transplant, at the time
the largest and most extensive transplant ever performed, on Connie Culp, who
had been shot in the face in 2004 by her husband. Over the next four years, Culp
underwent 23 surgeries to reconstruct her face, without good results. Finally, the
46-year-old mother of two consented to a transplant of 80 percent of a face from
Anna Kasper, a brain-dead nurse. Seven other surgeons at the Cleveland Clinic
assisted Dr. Siemionow.
In 2009, Culp went on television with a swollen face but remarkably good
speech and mental adjustment. In 2011, she rated her appearance 8 out of 10 and
lived on disability, taking 29 pills a day to control rejection.36
In 2013, United Network for Organ Sharing (UNOS) announced that it would
start coordinating hand and face transplants in America the way it does for other
organs. Its first priority was to change standard consent forms for organ donation
to include facial transplants.37
A review in 2014 of 28 face transplants found that the resulting face blends
aspects of both faces, such that no recipient resembles the donor.38 Muscle control,
sensitivity, and nerve regeneration occurred in most cases. Costs were high, aver-
aging $300,000, but national health services in Europe covered the operation,
explaining the high number there. Three recipients died because of failure to take
drugs, infection, and a previous cancer.
Correct selection of recipients correlated with success, because failure to take
immunosuppressive drugs or comply with rehabilitation could doom results. In gen-
eral, facial transplants recovered the lives of patients terribly injured by bombs,
genetic disorders, gunshots, animal bites, and burns.
ETHICAL ISSUES IN FIRST-TIME SURGERIES
The Desire to Be First and Famous
In 1967, surgeon Norman Shumway at Stanford University Hospital in California
had trained the longest and most rigorously in hopes of conducting a safe, success-
ful, first heart transplant. After Barnard jumped the gun, a few months later, Shum-
way transplanted the first heart in America. But Shumway felt bitterly disappointed
that Barnard had gotten the fame.39
A dozen heart surgeons around the world could have done what Barnard did.
Isn’t it arbitrary to glorify the surgeon who did the first heart transplant but to ignore
the great heart surgeons who laid the foundation but because of ethics, waited before
attempting a transplant?
Soon after Barnard’s operation, Brooklyn surgeon Adrian Kantrowitz trans-
planted a heart into a newborn. Kantrowitz needed an anencephalic infant as a
source of a heart and found one only the day after Barnard’s operation. If he had
found it sooner, Kantrowitz would be known today.
Reporters describe breakthrough surgeons as “brave,” “brilliant,” and “dedi-
cated,” but rarely do they report on those who were second or third or those who
built the foundation for the breakthrough. Nor do reporters explain how many
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 233
patients suffered before surgeons obtained good results or how hard the surgeon
pushed these patients.
One factor in being first is the media, which feeds public hunger for medical
breakthroughs. On the journalistic side, this hunger leads to inaccuracy and sensa-
tionalism. On the medical side, this hunger leads to haste and imprudence. In
Brazil, a surgeon so raced to do the first heart transplant there that his patient
learned of the event only when he woke up with another heart inside him.
Barnard wanted fame and seemed to relish it. He loved talking to reporters and
held daily briefings. When leaving the hospital, he paused for photographers and
shook the hands of waiting South Africans. For access to himself and Washkansky,
he took money from American journalists, justifying doing so to supposedly raise
money to benefit future patients.
Although Barnard wouldn’t allow Washkansky’s wife to touch him after the
operation, citing dangers of infection, such dangers mysteriously vanished when
Barnard allowed a film crew to tape the first conversation between Washkansky and
his son inside the hospital room.
Reporters understandably focused on the symbolism of the operation: A heart
that once lived inside one human now pumped inside another. But this symbolism
and Barnard’s resulting fame blinded them to clinical realities. Most reporters
lacked medical background and the public wanted medical miracles, not messy
clinical details.
Although DeVries criticized the “media circus,” the media had changed since
Barnard’s operation and were now more skeptical. At one point, when told there
would be no further briefings, reporters exploded. The hospital later relented, but
reporters became angry as weeks passed and the hospital kept spinning the facts.
New York Times physician-reporter Lawrence K. Altman especially held DeVries’s
feet to the fire.
What was going on? DeVries and the University of Utah had encouraged hun-
dreds of television and print reporters to follow the operation, but when it didn’t
turn out well, they tried to stonewall them. The desire to manage the news con-
flicted with their desire for fame.
Medically, is it ethical to try to achieve a “first” when the essential, underlying
problem remains unsolved? The artificial heart presented medical problems similar
to that of heart transplants before cyclosporine in that poor trade-offs for the patient
existed in both cases. Preventively treating one kind of problem worsened another.
With the first face transplant, French physicians seemed to have rushed Dinoire
into surgery merely to be first. Admittedly, they feared the female American surgeon
getting there first.
Problems of the desire to be first surfaced by examining selection of patients.
Was Barney Clark, a lifelong smoker, a good candidate to be the recipient of the
first artificial heart? Obviously not. Was Clint Hallam, who wanted a quick, mirac-
ulous new hand without doing any physical therapy, a good candidate to receive
the first hand transplant? Obviously not. Philip Blaiberg was a much better candi-
date for a heart transplant than Louis Washkansky, but he did not come early
enough.
What about selection of Isabelle Dinoire for the face transplant? Was this case
like that of Barney Clark? In other words, “She’s got nothing to lose, so why not
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234 Chapter 10 Ethical Issues in First-Time Organ Surgeries
try it?” A surgeon in Paris, who had been carefully preparing and playing by the
rules, accused Dubernard of bypassing established ethical and legal guidelines for
doing transplants.40 Was St. Aubert selected, despite damage to her face from her
hanging, in a rush to have a donor face so Devauchelle and Dubernard could
be first?
As a suicidal smoker, was Dinoire a good candidate for the first face transplant?
Obviously not. Would she adhere to rigorous post-transplant regimens? If her face
sloughed off in the worst case, did she possess the mental health to continue?
Obviously not.
Concerns about Criteria of Death
In 1968 and after Barnard’s operation, cardiac surgeon Werner Forssmann publicly
criticized Barnard for taking a beating heart out of one patient and transplanting it
into another.41 For Forssmann, before it became a candidate for transplantation, a
heart should stop. Because of similar concerns, Japan banned heart transplants for
many decades.
Although Barnard did not discuss this with Edward Darvall, he must have been
concerned about whether Denise Darvall’s death would be accepted. Critics scruti-
nized him for any sign of Dr. Frankensteinian overeagerness.
Barnard turned off Darvall’s respirator and waited for her heart to stop. The
longer he waited, the more her heart would be damaged. Washkansky needed a
heart in the best possible condition, and Marius wanted to remove Denise’s heart
before it stopped beating.
But Denise Darvall had a healthy heart. Why did her heart stop at all? Well,
first there was a problem. Because brain death had not yet been defined, death
came only by whole-body standards when the heart and lungs stopped. As surgeon
Thomas Starzl explained much later, “The steps to donation began with disconnec-
tion of the ventilator. … During the 5 to 10 minutes before the heart stopped and
death was pronounced, the organs to be transplanted were variably damaged by
oxygen starvation and the gradually failing and ultimately absent circulation.”42
So recipients like Louis Washkansky received damaged hearts that could have
been supplied in better condition. On the other hand, most transplant surgeons at
the time realized that in this matter they had little choice. Transplant surgery
depended entirely on altruistic, voluntary donations, and any suspicion of doubtful
procedures would sabotage donations.
However, Marius kept secret a detail for nearly 40 years: that rather than wait
for her heart to stop beating, at Marius’s urging, Barnard had injected potassium
into Denise’s heart to paralyze it and, thus, to render her technically dead (by the
whole-body standard).43
Responding the next year to this emergency, Harvard appointed a committee
to decide when beating hearts could be ethically removed from brain-damaged
patients. This committee gave birth to the famous Harvard Criteria of Brain Death
(discussed in Chapter 3 on comas), which requires the entire brain to be nonfunc-
tioning before organs can be removed.
After Barnard’s operation, in trying to be first in their area, surgeons hoarded
possible donors and did not share them with other surgeons, even if they better
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 235
tissue-matched a patient at another hospital. Everyone in the 1970s needed a system
that matched donor organs and patients, but the UNOS would not begin operating
for another decade.
Even as late as 1985, a Gallup poll showed that 44 percent of Americans hadn’t
signed organ cards because they feared being declared dead prematurely. In the
United States today, by law in all states, physicians who declare a potential organ
donor brain-dead may not belong to the surgical transplant team.
Quality of Life
An important ethical issue concerned the resulting quality of life for the recipients.
In many cases of famous, first-time surgery, quality of life for patients has been
poor.
In particular, life after a heart transplant does not live up to the wonderful life
reported in the popular media. Taking cyclosporin for life usually causes cancer,
and many recipients are in and out of hospitals for repeated operations and
complications.
With organ transplants, surgeons fought infections with antibiotics and by hold-
ing off immunosuppressive drugs, but this increased chances of rejection of the
foreign heart. If they gave immunosuppressive drugs, infections flourished. With
artificial hearts, blood clots (thrombi) formed on joints and mechanical surfaces.
When such clots break free (embolism), they travel in the blood to the small vessels
in the brain, lodge there, and cause brain damage (strokes). Blood-thinning medi-
cations such as Heparin reduced or prevented clots, but when given to postoperative
patients such as Barney Clark, the patients bled out of their sutures.
In 1988, three heart experts reviewed DeVries’s surgeries and concluded that
his implants created clots, and the longer patients stayed on it, the more clots they
had.44 So they wrote the epitaph of the artificial heart, a verdict that 20 years of
subsequent work has not reversed.
With the first face transplant, criticisms focused on the fact that Dinoire had
to take immunosuppressant drugs for life. Already in late 2005, surgeons had to
give her increased dosages to prevent rejection of her new face. As we know, such
drugs increased Dinoire’s risk later of cancer, diabetes, and other medical problems.
Estimates predict that 10 percent of such grafts will fail the first year and 30 to 50
percent within three to five years, so candidates must be prepared for failure.
Because transplanted skin triggers more fierce rejection than any other organ, facial
transplantation carries great risk of rejection and more risk of cancer from taking
immunosuppressant drugs at higher levels.
Barnard, DeVries, and Dubernard emphasized that for the first case, the ques-
tion was not how long the patient could live, but whether they could live at all. But
later criticisms set in. Did Washy have 17 days worth living? Did Clark have 112?
Or was it merely, as the New York Times said, “112 days of dying”?45 The Times
dubbed research on the artificial heart, “The Dracula of Medical Technology,” a
phrase that stuck.46
In the early 1980s, Sandoz Pharmaceutical discovered cyclosporin, a drug that
selectively blocks immune rejection of foreign tissue and that revolutionized organ
transplants. Thereafter, the number of organs transplanted soared dramatically.
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236 Chapter 10 Ethical Issues in First-Time Organ Surgeries
In 2012, two-thirds of heart transplant patients survived for five years.47 Dirk
van Zyl, Barnard’s sixth heart transplant patient, died in 1996, the longest-living
heart transplant recipient at 23 years. California resident Lizzie Craze in 2014 had
lived the longest with a heart transplant, having received one at age 2 in 1984,
which grew as she grew. She now runs marathons.48
In 2001, a surgeon at Abiomed implanted AbioCor, a titanium artificial heart,
into Robert Tools, who lived 151 days. Three other patients lived for 92, 78, and 32
days; another died on the operating table. Tom Christerson lived 17 months. By
2005, Abiomed had tested 14 patients, two of whom died immediately, the rest of
whom lived for an average of 5 months. The widow of James Quinn sued because
her husband went through two months of hellish dying and constantly worried
about who would pay for his round-the-clock nursing care.49 Abiomed asked to
implant another $250,000 device, but the Federal Drug Administration (FDA)
refused.50
In 2001, Norman Shumway doubted whether artificial hearts would ever be
successful. “An artificial heart is a tremendously difficult problem because the
human body is living tissue. … [The body] always is going to be opposed to plastic
materials.”51
In 1998, the FDA allowed cardiac surgeons to insert left ventricle assist devices
(LVADs) into patients as bridges to heart transplants. Being on the pump, which
costs about $60,000, gave patients 408 days of life compared to 150 on drugs.
Early patients on LVADs fared poorly. About half returned to the hospital within
six months, and a year after surgery, only 30 percent were alive. Worse, many
complained of pain and poor quality of life; some turned off their power, commit-
ting suicide, or requested physicians or ethics committees to let them die.52 Patients
today still suffer strokes from clots, fungal and viral infections, and the usual prob-
lems caused by immunosuppressant drugs.
By 2005, “the workhorse of mechanical support for patients with heart failure
today is the left ventricle assist device, which piggybacks onto the native heart,
pumping blood directly out of the left ventricle into the aorta.”53 In 2008, about
2,000 American patients a year got LVADs.54 In 2010, surgeons gave former vice-pres-
ident Dick Cheney a LVAD, although reporters downplayed any risks or complica-
tions (and he later got a heart transplant).
In one large, multi-institutional study in 2009 of 281 patients after 18 months
on LVADs, 157 had undergone transplants, 58 continued on LVADs, 7 had the LVAD
removed because their heart recovered, and 56 had died.55
One wonders about LVADs as a final destination. Is this a good way to live? In
any given year, 5 million Americans live with heart failure, with a half-million new
cases diagnosed each year. One study in 2001 estimated that the five-year cost of
an LVAD was $223,000.56 To give all patients with heart failure LVADs would cost
over a trillion dollars.
Defending Surgery
Surgeons are criticized for their desire for glory in pushing the boundaries of med-
icine to achieve a first. But what is so wrong with that? If no one aggressively tries
to make advances, no progress occurs.
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 237
Yes, Barnard pushed Washkansky, and yes, Washy didn’t know what he was in
for, but had Barnard guessed the other way, Washy might have lived much longer.
And because Barnard proved it could be done, today thousands of people are living
with heart transplants.
The same is true with hand and arm transplants, which are making more and
more progress. Face transplants are also coming along; they rescue horribly deformed
people from lives as outcasts.
True, the artificial heart failed, but LVADs and other heart-assist devices con-
tinue to improve and keep hundreds of people alive. One day, surgeons will achieve
breakthroughs here, too. It’s just a matter of time. Until then, “No guts, no glory”
should rule in surgical research, even if it sometimes gets messy for patients.
Cosmetic versus Therapeutic Surgery
When someone awakes to a different face, it is natural to ask, “Who am I?” Although
personality is not physical appearance, many people could find themselves with an
altered personality when their face changes. With better surgical techniques, will
some patients seek face transplants for merely cosmetic reasons? What exactly is
“cosmetic”? Neurofibromatosis?
What about transplanting an arm, hand, or finger? When does wanting to
improve appearance slide into wanting to improve function and both into the ther-
apeutic realm? With these transplants, skeptics debated the ethics of transplanting
non-vital limbs. Unlike hearts and livers, humans do not need a hand to survive.
More important, recipients must take antirejection drugs for life, increasing their
lifetime risks of cancer.
Right now, the consensus is that face transplants should be done only in cases
of lack of physical function, such as not being able to eat or speak. The risk asso-
ciated with surgery and drugs is too high for face transplants to be done merely to
improve appearance.
Hand and arm transplants are another matter. American wars in Iraq and
Afghanistan resulted in thousands of soldiers suffering from amputations from road-
side bombs, which in turn amped up research into artificial limbs. Progress with
such limbs has been so striking that in many cases, artificial limbs outperform
transplanted limbs and carry no long-term risks from immunosuppressant drugs of
cancer, bone loss, and heart damage.
Expensive Rescue versus Cheap Prevention
Yearly, surgeons transplant about 2,000 hearts in America, the country that per-
forms the most heart transplants. What about costs? Was the program cost-effective?
How much is one more year of life worth? Is every life worth the same amount?
What’s the opportunity cost of spending so much money this way?
Artificial hearts could cost society dearly. National Institutes of Health (NIH)
invested over $8 million in research leading up to the Utah project and over $200
million nationally in similar projects between 1964 and 1982.
According to Transplant Living, a website of UNOS, the cost of one heart trans-
plant for the first 180 days is about a million dollars.57 A double-lung transplant costs
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238 Chapter 10 Ethical Issues in First-Time Organ Surgeries
about $800,000, a kidney about $263,000, and a liver about $577,000. Most insurance
plans and state Medicaid plans cover transplants. The End Stage Renal Disease Act
mandates Social Security Disability to pay for kidney transplants (see next chapter).
If artificial hearts were successful, could society afford to pay for them? The
now-defunct Office of Technology Assessment estimated in 1990 that 60,000 Amer-
icans might use artificial hearts, at a cost to Medicare of $5.5 billion a year.58
All of which is a lot of money and effort to rescue a damaged heart. Glamorous,
high-tech operations are dramatic, but might not the money spent do more good for
more people if spent to prevent smoking, promote exercise, and create healthier hearts?
Progressive magazine complained that a “medical establishment grown fat on
chemicals and technological wizardry is not willing to empower people so they can
prevent illness.”59 Progressive argued that artificial hearts would benefit only the
small number of cardiac patients who could afford them and hence were “qualita-
tively different from the basic advances in immunology which have saved millions
of lives, even among populations not directly treated.”
Saving bad organs illustrates again the rule of rescue. Our society cares more about
saving an identifiable life than about preventing future deaths from heart failure.
One way to prevent such deaths is to tax cigarettes out of existence. Around
2002, New York and Washington put high state sales taxes on tobacco. A pack of
cigarettes in New York City in 2013 costs $12 to $15. Such taxes discourage smoking
in people when they are young—just when cigarette companies want them to become
addicted. Another way is to make cities, hospitals, and campuses smoke-free, mak-
ing it socially unacceptable for smokers to thrive.
Real Informed Consent?
How much does a candidate for a new kind of transplant understand about its
experimental nature? How much can such candidates understand, given that they
are seriously ill and desperate? In their situation, how is informed consent obtained?
As for consent, one hopes any possible patient understands the risk of cancer
from taking drugs for life to suppress rejection.
With face transplants, there is also risk of the entire face sloughing off and
ending up with a gigantic hole where nose, mouth, and chin should be. When asked
about the face transplant, Ms. Dinoire supposedly consented. A French national
ethics committee dismissed her consent, “The very notion of informed consent [in
this case] is an illusion.”60
The media paint a sunny picture of organ transplants, typically citing only one-
year survival rates. Within surgery, transplants have grown from being described as
experimental not poor 10-year rates to being routinely described as therapeutic.
Nevertheless, laypeople believe that healthy, transplanted organs will function
for a lifetime. The reality is different. If the recipient lives long enough, almost all
recipients will reject their organs. One-third to one-half of recipients reject their
heart transplants after five years. Kidney transplants began in 1951 and today are
closest to being truly therapeutic rather than experimental. But even so, over 50
percent of patients reject transplanted kidneys after 10 years.
To prevent rejection, surgeons prescribe cyclosporine, which over years often
causes malignant lymphoma and which often destroys kidneys, the liver, or the
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Chapter 10 Ethical Issues in First-Time Organ Surgeries 239
brain. Cyclosporine also makes women grow facial hair. After several years, its
efficacy fades.
Medical sociologists Renée Fox and Judith Swazey argued that reclassification of
organ transplants in the 1990s as “therapeutic” stemmed not from medical progress,
but to make transplants eligible for reimbursement and to obtain publicity to increase
donors. So organ donation was framed as a “gift of life” and “making a miracle hap-
pen,” ignoring “the darker emotional and existential implications of what it involved.61
After miserable results from heart surgery, one wonders about the relationships
between surgeon and patient. One surgeon confesses, “It is sometimes hard to meet
the eyes of patients who have improved enough to have been moved to the regular
post-op floor and finally become alert enough to communicate their despair and
disappointment. … Often, after entering the experience with great hope, patients
for whom transplantation has been a series of setbacks clearly articulate their feel-
ings of betrayal: ‘No one ever told me it could be like this.’”62
Conclusion
Norman Shumway, regarded inside surgery as the true “father of heart transplant sur-
gery,” died at age 83 in 2006, but his passing attracted little notice. Doctors called him
“one of the twentieth century’s true pioneers in cardiac surgery.” Philip Pizzo, M.D., dean
of Stanford School of Medicine, said of Shumway that “he developed one of the world’s
most distinguished departments of cardiothoracic surgery at Stanford, trained leaders who
now guide this field throughout the world and created a record of accomplishment that
few will ever rival. His impact will be long-lived and his name long-remembered.”63
Maria Siemionow will not be remembered for doing the first face transplant,
but should be remembered for doing the first ethical face transplant. And when it
comes to heart transplants, the name we really should remember is “Shumway.”
FURTHER READING
Christiaan Barnard and Curtiss Bill Pepper, One Life, New York: Macmillan, 1969.
Philip Blaiberg, Looking at My Heart, New York: Stein and Day, 1968.
Renée Fox and Judith Swazey, The Courage to Fail: A Social View of Organ Transplants and
Dialysis, 2nd ed. rev., Chicago: University of Chicago Press, 1978.
Donald McRae, Every Second Counts: The Race to Transplant the First Human Heart, New York:
Putnam, 2006.
Thomas Starzl, The Puzzle People: Memoirs of a Transplant Surgeon, Pittsburgh, PA: University
of Pittsburgh Press.
National Institute for Health and Clinical Excellence (UK), “Interventional Procedure Overview of
Left Ventricular Assist Devices as a Bridge to Transplant or to Recovery,” December 2005.
DISCUSSION QUESTIONS
1. Was surgeon Barnard correct to force Washy to go back on a ventilator one last
time? In terms of Margaret Battin’s ideas, did Washy get a “least worst death?”
2. How did the first heart transplant lead to the first definition of brain death at
Harvard? Why was this definition so conservative?
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240 Chapter 10 Ethical Issues in First-Time Organ Surgeries
3. What were the medical trade-offs in the first heart transplant and first artificial
heart between treating two different things? Do such trade-offs suggest that
each operation was premature?
4. Is it wrong for people to want to be famous? For surgeons? Isn’t that how great
things are accomplished, by people pushing themselves? What’s wrong with
fame that is deserved?
5. Is the fact that so many famous surgeons got divorced after becoming famous
relevant to judging their accomplishments?
6. Why is it so hard to put money into preventing heart disease rather than expen-
sively trying to cure it after it develops?
7. If one is dying and hope is offered, is it possible to get real informed consent?
Won’t a dying man grasp at any offered hand?
8. The Baby Doe chapter and this one suggest that many reporters may not have
the medical background to inform readers of the true issues of a breakthrough.
Has this situation gotten better or worse with the demise of some famous
newspapers?
NOTES
1. Obituary of Norman Shumway, The Independent (London, England), February 16, 2006.
2. Thomas Starzl, The Puzzle People: Memoirs of a Transplant Surgeon, Pittsburgh University Press,
Pittsburgh, PA, 1992, p. 151.
3. Christiaan Barnard and Curtiss Bill Pepper, One Life, Macmillan, New York, 1969, p. 372.
4. Ibid.
5. “The Ultimate Operation,” Time, December 15, 1967, p. 65; “Heart Transplant Keeps Man Alive in
South Africa,” New York Times, December 4, 1967, p. A1.
6. Barnard and Pepper, One Life, p. 444.
7. Quoted in Connie Chung, Knife to the Heart, television documentary on heart transplant surgery,
January 27, 1997.
8. Donald McRae, Every Second Counts: The Race to Transplant the First Human Heart, Putnam, New
York, 2006, p. 272.
9. Erica Goode, “Dr. Francis Moore, 88, Dies; Innovative Leaders in Surgery,” New York Times, Novem-
ber 29, 2001.
10. Francis Moore, M.D., quoted in interview with Connie Chung, Knife to the Heart.
11. Andre Cournand, New York Times, December 6, 1967.
12. Norman Staub, quoted in Peter Hawthorne, The Transplanted Heart, Keartland Publishing, Johan-
nesburg, South Africa, 1968, p. 188.
13. Denise Grady, “Summary of Discussion of Ethical Perspectives,” in Margery Shaw, ed., After Barney
Clark, University of Texas Press, Austin, TX, p. 52.
14. Time, December 9, 1982, p. 43.
15. Time, March 14, 1983, p. 74.
16. Thomas Preston, “Who Benefits from the Artificial Heart?” Hastings Center Report 15, no. 1 (Feb-
ruary 1985), p. 5; New York Times, December 5, 1988, p. A2.
17. Washington Post, May 1, 1983, p. A2.
18. William A. Check, “Lessons from Barney Clark’s Artificial Heart,” Health, April 1984, p. 22, 26.
19. Gideon Gill, “Burcham Dies after Blood Accumulates in Chest,” Louisville Courier-Journal, April 26, 1983.
20. Ibid.
pen07945_ch10_221-242.indd 240 9/8/16 9:52 AM
Chapter 10 Ethical Issues in First-Time Organ Surgeries 241
21. Michael Vitez, “Marriage of Two Minds: ‘World’s Smartest Couple’ Nears First Anniversary,”
Knight-Ridder Newspapers, July 3, 1988.
22. Steve Ditlea, “Robert Jarvik Returns,” Red Herring, October 11, 2002.
23. Thomas H. Maugh II, “Dr. Willem Kolff Dies at 97; Dutch Physician Built First Kidney Dialysis
Machine,” Los Angeles Times, February 14, 2009.
24. David Benatar and Don A. Hudson, “A Tale of Two Novel Transplants Not Done: The Ethics of
Limb Allografts,” British Medical Journal 324 (April 20, 2002), pp. 971–975.
25. http://www.thesun.co.uk/sol/homepage/news/1784671/Transplant-man-Karl-Merk-feels-like-a-teen-
ager.html.
26. http://www.cbsnews.com/news/texas-mother-of-three-to-get-first-double-arm-transplant-in-the-us/
27. According to Dr. Nadey Hakim of London, interviewed by Lawrence K. Altman, “A Pioneering
Transplant, and Now an Ethical Storm,” New York Times, December 6, 2005.
28. Marco Lanzetta et al., “International Registry on Hand and Composite Tissue Transplantation,”
Transplantation 79, no. 9 (May 15, 2005), pp. 1210–1214.
29. Susan Okie, “Brave New Face,” New England Journal of Medicine 354, no. 9 (March 2, 2006), pp. 889–894.
30. Ariane Bernard and Craig S. Smith, “French Face-Transplant Patient Tells of Her Ordeal,” New York
Times, February 7, 2006.
31. Craig S. Smith, “As a Face Transplant Heals, Flurries of Questions Arise,” New York Times, Decem-
ber 14, 2005, p. A1.
32. Lawrence K. Altman, “A Pioneering Transplant, and Now an Ethical Storm,” New York Times,
December 6, 2005, p. D1.
33. Personal communication to author, September 7, 2006.
34. Jean-Michel Dubernard, “Outcomes 18 Months after the First Human Partial Face Transplantation,”
New England Journal of Medicine, December 13, 2007, pp. 2451–2460.
35. Reuters, “China Performs Its First Human Face Transplant,” April 14, 2006.
36. Jeff Truesdell and Alex Tresniowski, “A New Face, A New Life,” People, August 15, 2011, pp. 57–60.
37. Associated Press, “Feds to Oversee Hand, Face Transplants like Organs,” December 27, 2013.
38. “An About-Face on a Risky Transplant,” New York Times, April 28, 2014, p. D1.
39. Donald McRae, Every Second Counts: The Race to Transplant the First Human Heart, Putnam, New
York, 2006.
40. Lawrence K. Altman, “A Pioneering Transplant, and Now an Ethical Storm,” New York Times,
December 6, 2005.
41. Werner Forssmann, quoted in Barnard and Pepper, One Life, p. 360.
42. Starzl, The Puzzle People, p. 148.
43. McRae, Every Second Counts, p. 192.
44. William Pierce, “Permanent Heart Substitution: Better Solutions Ahead,” editorial, Journal of the
American Medical Association 259, no. 6 (February 12, 1988), p. 891.
45. New York Times, editorial, December 16, 1982, p. A26.
46. “The Dracula of Medical Technology,” editorial, New York Times, May 16, 1988.
47. National Heart Transplant Life Expectancy Statistics, Nazih Zuhdi Transplant Institute, Oklahoma
City, OK, http://integrisok.com/nazih-zuhdi-transplant-institute-oklahoma-city-ok-nzti-heart-trans-
plant.
48. “Redwood City Woman is Longest Living Person with Same Transplanted Heart,” ABC News,
October 8, 2014, http://abc7news.com/health/redwood-city-woman-is-longest-living-person-with-
same-transplanted-heart/342558/ (accessed February 16, 2016).
49. Stacy Burling, “Widow Sues Artificial-Heart Maker,” Philadelphia Inquirer, October 17, 2002; Sheryl
Gay Stolberg, “On Medicine’s Last Frontier: The Last Journey of James Quinn,” New York Times,
October 8, 2002.
50. Lauran Neegaard, “FDA Advisers Reject Abiomed’s Artificial Heart,” Associated Press, Birmingham
News, June 24, 2005, p. A14.
pen07945_ch10_221-242.indd 241 9/8/16 9:52 AM
http://www.cbsnews.com/news/texas-mother-of-three-to-get-first-double-arm-transplant-in-the-us/
http://www.thesun.co.uk/sol/homepage/news/1784671/Transplant-man-Karl-Merk-feels-like-a-teen-ager.html
http://www.thesun.co.uk/sol/homepage/news/1784671/Transplant-man-Karl-Merk-feels-like-a-teen-ager.html
http://integrisok.com/nazih-zuhdi-transplant-institute-oklahoma-city-ok-nzti-heart-trans-plant
http://integrisok.com/nazih-zuhdi-transplant-institute-oklahoma-city-ok-nzti-heart-trans-plant
http://abc7news.com/health/redwood-city-woman-is-longest-living-person-with-same-transplanted-heart/342558/
http://abc7news.com/health/redwood-city-woman-is-longest-living-person-with-same-transplanted-heart/342558/
242 Chapter 10 Ethical Issues in First-Time Organ Surgeries
51. Norman Shumway, quoted in Transplant News, July 13, 2001, from an interview in the San Francisco
Chronicle.
52. Rob Stein, “Heart Pump Creates Life-Death Ethical Dilemma,” Washington Post, 24, April 24, 2008.
53. Sandeep Jauhar, “The Artificial Heart,” New England Journal of Medicine, February 5, 2004, pp. 542–544.
54. Denise Grady, “Researchers Find Poor Use of Pumps for Ailing Hearts,” New York Times, November
6, 2008, p. A19.
55. H. J. Eisen and S. R. Hankins, “Continuous Flow Rotary Left Ventricular Assist Device,” Journal of
the American College of Cardiology 54, no. 4 (2009), pp. 322–324. doi:10.1016/j.jacc.2009.04.028.
PMID 19608029.
56. Alan Moskowitz, “The Cost of Long-Term LVAD Implantation,” Annals of Thoracic Surgery 71 (2001),
pp. S195–S198.
57. Transplant Living, UNOS, http://www.transplantliving.org/before-the-transplant/financing-a-trans-
plant/the-costs/.
58. D. P. Lubeck and J. P. Bunker, Office of Technology Assessment, Case Study 9, The Artificial Heart:
Costs, Risks, and Benefits, U.S. Government Printing Office, Washington, D.C., 1982.
59. Progressive, February 1983, pp. 12–13.
60. Lawrence K. Altman, “Patient Opted for Transplant as Method to Mend Face,” New York Times,
December 12, 2005, p. A6.
61. Renée Fox and Judith Swazey, The Courage to Fail: A Social View of Organ Transplants and Dialysis,
2nd ed., rev., University of Chicago Press, Chicago, 1974, 1978.
62. P. M. Park, “The Transplant Odyssey,” Second Opinion 12, November 1989, pp. 27–32; quoted in
Renée Fox and Judith Swazey, Spare Parts: Organ Replacement in American Society, Oxford University
Press, New York, 1992, p. 202.
63. “Norman Shumway, Heart Transplantation Pioneer, Dies at Age 83,” Press Release, February 10,
2006, Stanford Medical Center.
pen07945_ch10_221-242.indd 242 9/8/16 9:52 AM
http://www.transplantliving.org/before-the-transplant/financing-a-trans-plant/the-costs/
http://www.transplantliving.org/before-the-transplant/financing-a-trans-plant/the-costs/
This chapter focuses on two questions: just allocation and personal responsibility
for health. Every day, someone gets access to expensive medical resources and
someone does not. In 1962, the famous God Committee in Seattle decided which
patients received dialysis and which did not. In distributing such scarce resources
in medicine, does it make sense to ask: Who deserves it? Should smokers with
emphysema get lung transplants? Should alcoholics get liver transplants?
Several distributive standards conflict in answering that question. An impartial
Kantian approach distributes an impersonal lottery, but utilitarians focus on maxi-
mizing years lived per machine or organ. Others focus on personal characteristics of
the recipient either to exclude one class or to identify the most deserving. Finally,
we can let the media identify a patient for the organ or machine, a way called the
“rule of rescue.”
THE GOD COMMITTEE AND ARTIFICIAL KIDNEYS
The kidneys remove toxins accumulated by normal cellular metabolism in the blood.
When both kidneys fail, toxins accumulate to lethal levels. Hemodialysis (literally
“tearing blood apart”) substitutes for the kidneys: It removes blood from the body
and sends it through cannulas, where a surrounding solution absorbs toxins by
osmosis through a semipermeable membrane; then the cleansed blood is returned
to the body. Patients in renal failure must undergo hemodialysis (more simply, “dial-
ysis”) for several hours, two or three times a week.
The process doesn’t cure kidney (renal) failure and leaves patients tired and
cranky, with lives revolving around appointments. To get off dialysis, most patients
want to get a kidney transplant.
Willem Kolff invented the hemodialysis machine in the Netherlands in 1943 (he
also later worked on artificial hearts with Robert Jarvik). Kolff converted an auto-
mobile’s fuel pump to force blood to and from the body for cleansing. For each
C H A P T E R 1 1
The God Committee
Just Distribution of Scarce Medical Resources and
Personal Responsibility
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244 Chapter 11 The God Committee
session of dialysis, surgeons connected cannulas to arteries and veins. Because an
artery or vein could be used only once, surgeons soon exhausted all sites.
In 1960, physician Belding Scribner in Seattle invented the indwelling shunt, a
piece of tubing permanently attached to one vein and to one artery, allowing blood
to flow continuously. Like a spigot, the shunt could be shut off between dialyses.
At first, Scribner did not realize that the combination of a workable dialysis
machine and a permanent shunt meant that he and Kolff had created an artificial
kidney, a machine that could sustain life. This breakthrough led to something won-
derful: Thousands of dying renal patients would now live. It also led to a new ethical
issue: Given the scarcity of machines, what criteria of distributive justice would be
used to select who would live and who would die?
When Belding Scribner developed his shunt, inpatient dialysis cost $20,000 a
year. Because it was experimental, insurance companies refused to pay for it. Such
companies do not cover experimental treatment in order to hold down costs; when
proven therapeutic, the treatments are covered.
Scribner’s Swedish Hospital dialyzed its first patients without charging them,
but in 1962 told Scribner he could admit no more patients for dialysis. By then,
Scribner had a year’s experience with dialysis and tried dialysis outside the hospital
in an outpatient dialysis center.
That center could serve 17 patients, but many more were eligible. From the
beginning, the ethical problem arose: Who shall live when not all can?1
Instead of leaving this problem of distributive justice to physicians, Swedish
Hospital, Scribner, or King County Medical Society took the unusual step of creat-
ing an Admissions and Policy Committee to decide who would get a dialysis
machine. Scribner wrote in 1972, “As I recall that period, all of us who were involved
felt that we had found a fairly reasonable and simple solution to an impossibly
difficult problem by letting a committee of responsible members of the community
choose which patients [would receive treatment].”2
They created this committee to take the burden of moral decision away from phy-
sicians, assuming that physicians would naturally want their patients to be accepted.3
The committee of seven members represented the community: a minister, a lawyer, a
housewife, a labor leader, a state government official, a banker, and a surgeon. Two
physicians familiar with dialysis served as advisers and screened applicants for medical
unsuitability. The committee worked anonymously and never met candidates.
The committee first limited candidates to residents of the state of Washington
who were under 45; candidates had to be able to afford dialysis or have insurance
that covered it. Almost immediately, too many patients applied and additional cri-
teria became necessary. Famously, the committee then considered personal charac-
teristics about possible recipients: employment, children, education, motivation,
achievements, and promise of helping others—criteria somewhat like those used by
committees to admit students to medical school.
The committee eventually asked for analyses of a candidate’s abilities to tolerate
anxiety and to manage medical care independently; it considered whether a candi-
date had previously used symptoms to get attention from relatives and physicians.
It evaluated the personality and personal merit of the candidate and the family’s
support for a patient on chronic dialysis. Elderly curmudgeons without siblings or
children fared badly.
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Chapter 11 The God Committee 245
Shana Alexander Publicizes the God Committee;
Starts Bioethics
Before modern bioethics had begun, this committee agonized over distributive jus-
tice. In 1962, no philosophers had written about ethical issues of allocating organs;
indeed, no one had written about bioethics at all.4 At least, they had not in the
modern sense in which cases are analyzed to find a just public policy. The major
previous writings were in Catholic medical ethics.
In May 1962, Dr. Scribner took a patient to Atlantic City for a newspaper con-
vention to lobby publicly for more dialysis machines. In the process, he described
to reporters his Admissions and Policy Committee, and it was his account of that
committee, rather than his appeal for more machines, that made the front page of
the New York Times the next day.5
Life magazine assigned its first woman reporter, Shana Alexander, to write
this story and she spent three months in Seattle doing so.6 Her article appeared
in November 1962 and carried the term “God Committee”—a term that stuck.7
She described the committee as playing a godlike role in deciding who would
live and who would die. She described in detail the committee’s criteria, which
came to be called social worth criteria, or criteria about a person’s worth to
society.
In the spring of 1963, the Seattle Times ran on its front page a picture of nine
of the center’s dialysis patients, with the heading, “Will These People Have to Die?”8
As a result of this “rescue in the media,” the Boeing Corporation and the U.S. Public
Health Service offered temporary financial support for the patients identified by
the newspaper.
In 1965, television reporter Edwin Newman narrated an NBC documentary on
the God Committee, Who Shall Live? That year, Congress had added to Social Secu-
rity two national medical programs—Medicare for the elderly and Medicaid for the
indigent, but neither covered dialysis. In Who Shall Live? a congressman asks why,
if America could have a program to explore space, it couldn’t have a dialysis pro-
gram to save Americans. National interest grew about the story and, indirectly,
about bioethics.
The media mattered greatly in this case. Shana Alexander said that when
Scribner went to Atlantic City, he had been “angling” to get the story into the
magazine with the largest circulation. Medical sociologist Judith Swazey agrees that
Scribner set out to get publicity.9
Thirty years later, Scribner said that he had been “totally naive” about the
national publicity, that a 1968 article in UCLA Law Review gave him “a lot of flak,”10
that he had had nothing to do with the committee, which had been created and
supervised by the King County Medical Society, and that when he had a dying
patient who wasn’t selected, he tried to circumvent the committee.
The story in the Seattle Times about his work could not have been written with-
out the initiation and cooperation of Scribner and other physicians at Seattle hos-
pitals. These physicians manipulated the Seattle Times, Life, and NBC News to obtain
funds for their patients. Their success began a pattern of using the media when
patients needed organ transplants, a pattern that came to be called the rule of
rescue.
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246 Chapter 11 The God Committee
The End Stage Renal Disease Act (ESRDA)
The God Committee continued to select and reject candidates for dialysis for nearly
a decade. By 1971, many stories had dramatized the plight of patients in renal fail-
ure, and that year Shep Glazer, the president of the American Association of Kidney
Patients, testified before Congress. As the story goes (it may be exaggerated), Glazer
dialyzed himself before the House Ways and Means Committee, disconnected a tube
from the machine, let his blood flow onto the floor, and said, “If you don’t fund
more machines, you’ll have this blood on your hands.”
In 1972, Congress legislated for Americans a one-organ right to medical care. The
End Stage Renal Disease Act (ESRDA) mandated the federal government to pay for
a dialysis machine for any American who needed one. Faced with the problem of
distributive justice, of deciding which patients should be funded and how to select
them, some critics believe that Congress took the easy way out and funded all patients.
Others say that Congress showed compassion, allowing everyone to live in times of
prosperity and passing the buck to later generations about how to pay for it all.
Congress passed ESRDA Act in a session lasting only 30 minutes. The impetus
came from a coalition of kidney patients, lobbyists for some physicians, concerns
over high rates of kidney failure in people of color, and concerns that too much
money was being spent on space and the war in Vietnam but too little on dying
people who might be saved.
By making dialysis available to all patients, ESRDA Act ended the problem of
allocating machines and ended the need for the God Committee.
In retrospect, ESRDA Act was hastily conceived, and it set an unfortunate prec-
edent. Other groups, such as hemophiliacs, pressed for similar coverage.
Senator Vance Hartke of Indiana predicted that ESRDA Act would cost $100
million the first year, but its cost would then drop sharply because of later efficien-
cies in production. Willem Kolff said his machines could be mass-produced for $200
each. These predictions are textbook lessons in how classical supply and demand
fail in medical finance.
Under cost-plus reimbursement under ESRDA Act, in effect during the 1970s and
1980s, hospitals could buy as many dialysis machines as they wanted and charge
the cost plus a percentage of profit to ESRDA Act. So ESRDA Act incentivized them
not to buy $200 machines but to buy $20,000 machines. The larger the cost, the
greater the profits they made.
In 1983 to rein in out-of-control costs, government tried reimbursement by
diagnostically related groups (DRGs) instead of cost-plus funding. Hospitals got around
DRGs and costs continued to soar. As yet another way to control costs, managed
care started in the 1990s.
By 2015, instead of costing $100 million, the 600,000 Americans on dialysis in
ESRDA Act cost ESRDA Act $28 billion a year, making ESRDA Act one of the most
expensive medical programs in North America.
Under ESRDA Act, Congress also reimbursed kidney transplants. After the
approval for use of cyclosporin in 1983, renal transplants jumped from 3,730 in
1975 to 9,000 in 1986 and overall, organ transplants soared to an all-time record of
29,532 in 2015.11 This development raised new questions: Should every dialysis
kidney patient get a kidney transplant? If so, where should the kidneys come from?
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One thing is certain: What drove the expansion of people on dialysis and people
getting kidney transplants was the fact that federal funds paid for all treatments for
the kidney, a situation that existed for no other organ or disease. In contrast, during
the next half-century, over 40 million Americans lacked basic medical coverage. But
any American suffering from kidney failure had all medical expenses covered and,
frequently, could go on disability.
The Birth of Bioethics
For complex reasons, Belding Scribner did something that went against a
centuries-old medical practice: He made public a moral dilemma that hitherto had
been discussed only privately among physicians. Bringing this issue to the public’s
attention created controversy within medicine. As in Karen Quinlan’s case, physi-
cians felt that such ethical issues should be handled quietly within the profession.
By making this move, Scribner began the education of the American public
about ethical problems in medicine. Scholars now began to publicly discuss prob-
lems such as brain death, assisted reproduction, and just allocation. With these
articles and new courses, the new interdisciplinary field of bioethics began.
Supply and Demand of Donated Organs
Over the past half-century, organs available for donation have never matched
demand: The number from cadavers hovers around 4,000 a year. The need for
transplantable organs has steadily increased, especially as more Americans on dial-
ysis desire kidney transplants and as Americans live longer.
A new source of organs has been so-called live donations from friends and
relatives (“live” here contrasts to “cadavers” or “brain-dead patients”). In a milestone
in 2003, more transplantable kidneys came in America from live donors than from
cadavers.
Mandated choice requires adults, in obtaining a driver’s license, to indicate
whether they want to be organ donors. Most American states require this choice.
Required request mandates that someone at a hospital ask a relative upon admission
of a patient. About 47 percent of Americans are potential organ donors.
Confusion over the definition of brain death decreases organ donation. For this
reason, America has not moved beyond the conservative Harvard criteria of brain
death to broader criteria.
Of course, without a signed donor card, a family may still donate organs of a
brain-dead relative. Even if the brain-dead patient has a signed card, if the family
refuses, surgeons usually do not take organs because they fear lawsuits and bad
publicity.
Some African-Americans refuse to sign donor cards, because they consider
themselves more likely to be declared dead prematurely. In 1968, surgeon Richard
Lower transplanted the heart of African-American Bruce Tucker using the new
Harvard criteria of brain death. When Tucker’s heart was removed, he was not
legally dead by the old, whole-body criteria, but it took a tense trial for a judge and
jury in Richmond, Virginia, to decide that the new criteria excused a transplant
surgeon from charges of murder.12
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248 Chapter 11 The God Committee
At least 14 European countries follow France and Spain and adopt presumed consent:
Anyone who has not declined to be a donor in writing to a national agency is presumed
to be a donor. This is also called an opt-out policy. Most American states follow an opt-in
policy, where only those citizens who consent to donate are potential donors.
ETHICAL ISSUES IN ALLOCATING SCARCE
MEDICAL RESOURCES
Social Worth
The God Committee took social worth into account (although it did not use this
phrase) in distributing machines. Medical sociologists Renée Fox and Judith Swazey,
who spent 40 years studying artificial kidneys and transplantation, reviewed the
minutes of the committee’s meetings and criticized its criteria:
Within these very general criteria, the specific, often unarticulated indicators that
were used reflected the middle-class American value system shared by the selection
panel. A person “worthy” of having his life saved … was one judged to have qualities
such as decency and responsibility. Any history of social deviance, such as a prison
record, any suggestion that a person’s married life was not intact and scandal-free,
were strong contraindications to selection. The preferred candidate was a person
who had demonstrated achievement through hard work and success at this job, who
went to church, joined groups, and was actively involved in community affairs.13
Any standard of social worth implies that some people are worth more than
others. Is it therefore unjust? Immanuel Kant argued that every human should be
treated as an “end in himself” with absolute moral worth. To judge that one human
deserves to live more than another is to treat some wrongly as a “mere means.”
How then would Kant treat everyone the same? The key question is what rule
or maxim could be universalized. For Kant, that would be impartial, random selec-
tion by lot, say, by drawing straws.
Two critics of the God Committee, a psychiatrist and a lawyer, raked social
worth over the coals:
[Life] magazine paints a disturbing picture of the bourgeoisie sparing the bourgeoi-
sie, of the Seattle committee measuring persons in accordance with its own
middle-class suburban value system: Scouts, Sunday school, Red Cross. This rules
out creative conformists, who rub the bourgeoisie the wrong way but who histori-
cally have contributed so much to the making of America. The Pacific Northwest
is no place for a Henry David Thoreau with bad kidneys.14
Boston University law professor George Annas criticized the committee for pre-
ferring housewives over prostitutes, working men over “playboys,” and scientists
over poets.15 Annas argued that some criteria of social worth can be just at some
stage of the selection process, but these criteria must be made public. Secret rules
allow discrimination based on race, sex, class, wealth, or other arbitrary qualities.
Personal Responsibility for Illness and Expensive Resources
Kant’s ethics may also be contradictory because Kant also stresses personal responsibility
for health. Should someone who behaves irresponsibly get a scarce medical resource?
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Chapter 11 The God Committee 249
Take the famous case considered by the God Committee of the half-Sioux Ernie
Crowfeather. A small-time criminal and a charmer, he received dialysis for 30 months,
but refused to follow the regimen, hated his quality of life, drank, imposed his child-
like needs on the staff, and finally turned down further therapy and died.16 Scribner
confessed that to get dialysis for Ernie, he went around the committee.17
As a matter of public policy, why should the medical system reward a lifetime
of unhealthy behavior by giving patients expensive medical resources? Overweight
patients with high blood pressure often later get diabetes and suffer strokes or heart
disease, all expensive to treat. Should the system spend so much on people whose
own unhealthy behavior caused their problems?
Consider giving liver transplants to alcoholics. By far the most expensive organ
to transplant, a liver transplant requires a highly skilled team and takes a long time.
The most common cause of liver destruction, or end-stage liver disease (ESLD), is
alcoholism. When alcohol is a factor, the condition is actually called alcohol-related
end-stage liver disease (ARESLD).
In the 1990s, physicians debated whether patients with ARESLD should be
equally eligible for liver transplants. This is partly a medical issue, since it can be
analyzed in terms of which patients will benefit most from such a transplant, but
it also concerns personal responsibility. Is a nondrinker more deserving of a donor
liver? Can someone with ARESLD be blamed for the loss of his liver? Would a
drinker keep on drinking, thereby destroying the new liver, or would drinkers be
transformed by receiving the gift of life?
With ARESLD, this question is complicated by disagreement over whether alco-
holism is a disease or a chosen behavior. The disease model of alcoholism has
prevailed for some time but has recently been attacked by philosopher Herbert
Fingarette, who in turn draws on themes in Kant’s ethics.18 (These questions figure
prominently in Chapter 19 on addiction.)
In 1992 in Chicago, physicians Alvin Moss and Mark Siegler argued that as
ARESLD principally causes liver failure, because not enough livers are available for
transplant, and as recidivism is likely among alcoholics, patients who develop liver
failure “through no fault of their own” should have a higher priority for donor livers
than patients with ARESLD, whose condition “results from failure to obtain treat-
ment for alcoholism.”19
Two medical ethicists at the University of Michigan, Carl Cohen and Martin
Benjamin, disagreed. They maintained that alcoholics are not morally blame-worthy
and, after liver transplants, survive as long as nonalcoholics and so should not be
penalized.20
At the very least, the medical system sends out contradictory messages: first,
eat healthy, exercise, and take responsibility for your health; second, we will rescue
you in illness and do everything possible to keep you alive, regardless of cost or
time expended by medical staff.
Kant and Rescher on Just Allocation
Kantian ethics pulls in two directions on the question of penalizing alcoholics for
liver transplants. On the one hand, Kant believes that people choose to drink and
should be held responsible. For him, the claim that “the alcoholic’s actions are
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250 Chapter 11 The God Committee
caused by a disease” treats the person as a “mere means,” as if he were the passive
vehicle of causal forces over which he has no control. Herbert Fingarette’s research
shows that most so-called alcoholics drink voluntarily. Given proper incentives and
contexts, they can moderate their behavior. Fingarette also emphasizes that Alco-
holics Anonymous assumes that drinkers can choose not to drink.
As said, all other things being equal, Kantian ethics also pulls for a lottery in
distributing a scarce liver, to treat each person equally and as having equal moral
worth. Can these two strains of Kantian ethics be reconciled?
Perhaps. In 1969, philosopher Nicholas Rescher argued that the God Committee
had been correct to use criteria that included social worth.21 Rescher favored con-
sidering life expectancy, number of dependents, potential for future contributions
to society, and past achievements. Less controversially, he supported screening can-
didates for medical problems that were likely to make them do poorly on dialysis
and waste machines. He suggested that such a system might be based on points,
with ties broken by a lottery.
Kant might be sympathetic to Rescher’s two-tiered approach. Those who had
injured themselves through voluntary behavior do not deserve the same chance as
those who lost kidneys through a genetic disease. Once such people are screened
out, however, everyone should be considered equally by lottery.
Wealth, Celebrities, Justice, and Waiting Lists for Organs
In the 1970s, no system existed for distributing donated organs, and surgeons with
organs in one medical center did not always share them with surgeons elsewhere.
This was wasteful. Some hoarded organs soon were lost.
The National Transplantation Act (1984) and the federal Task Force on Organ
Transplantation (1986) were combined in 1987 to create the United Network for
Organ Sharing (UNOS). UNOS alleviated some regional competition and estab-
lished national standards about which patient would get the next available organ.
UNOS continually grapples with the crucial philosophical question: What is the most
just way to allocate organs?
UNOS deals only with candidates who are already in the system. Thus, how
and when applicants get onto waiting lists for donor organs remains a pressing
issue. Specifically, if you don’t have medical insurance or a hospital willing to take
you as a charity case, you won’t get on the UNOS list.
The practice of multiple listing raises questions about wealth and injustice.22 Some
patients get appointments with surgeons at more than one transplant center and have
themselves worked up at each; but only people who can take time off from work,
afford to travel, and have generous medical plans can arrange for multiple listings.
In 2009, Apple cofounder Steve Jobs illustrated the advantages of multiple list-
ing when he traveled from California to Memphis to get a liver transplant. Having
the money to get himself worked up in Tennessee, he became the sickest patient
on the hospital’s list and got the transplant.
For a patient who needs a kidney, being on several lists may not be necessary
to get one, but for a patient who needs a heart or a liver, a multiple listing may be
a matter of life and death. One criterion for receiving a heart or liver is locality: A
candidate must be within the area of the transplant center or have the money to
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Chapter 11 The God Committee 251
get there fast. A patient who registers at half a dozen such centers could signifi-
cantly increase his or her chances of being selected.
Imagine that you are going to die in Memphis of liver failure, but you know
that 100 other patients want a liver for the same reason. Then you learn that
Californian Steve Jobs received a liver because he gamed the system to get on the
right list. It’s one thing to feel unlucky because you’re in a life-threatening condi-
tion, but another to feel that you are going to die because someone else managed
to get into line in front of you.
When former baseball star Mickey Mantle came to Baylor University Medical
Center in Dallas on May 28, 1995, decades of alcoholism, as well as hepatitis C,
had destroyed his liver. Physicians diagnosed him with ESLD.23 A CT scan found a
large tumor on the center of his liver, compressing his common bile duct.24
Mantle went on the UNOS waiting list for a liver transplant classified as a
Stage 2, the second most urgent.25 Two days later, he received a liver.26
Many felt that Mantle’s celebrity status had vaulted him to the top. The trans-
plant team was also criticized for giving a transplant to a person with (1) liver cancer
and (2) lifelong alcoholism. Many felt that Mantle had destroyed his liver on his
own and that someone more deserving should have received the transplant. Three
months after his transplant, Mantle died from cancer.27 His case rocked the public’s
trust in UNOS and its methods of selecting candidates.
Similarly in 1993, the governor of Pennsylvania from 1987 to 1995, Robert
Casey, was diagnosed with Appalachian familiar amyloidosis, a rare genetic disease.
Seemingly within 10 hours of entering the waiting list, Casey got a combined
liver-heart transplant, even though many other candidates were ahead of him.
It was later claimed he had been on the list for a year but did not want his
disease known for political reasons. Pittsburgh’s famous transplant program also
defended Casey’s selection, saying he was the only person needing both a liver and
a heart. After the outcry, UNOS revised its criteria to say that a successful candidate
must be at the top of one of the lists for single organs (which Casey had not been)
in addition to his place on any list for two transplants.
In 1990, New York banned multiple listing. In 1992, some patients who were
multiple-listed argued in a hearing before UNOS that forbidding the practice denied
their “liberty right” to contract for medical care.28
There are two powerful arguments against multiple listing. First, a primary
attribute of a just medical system is equality of access and the use of wealth to jump
the line violates this norm. Second, multiple listing compromises the entire UNOS
system because some people are getting listed above others arbitrarily. UNOS should
be impartial not only in dealing with candidates who are already listed but also in
the actual process of deciding who gets listed.
A similar problem surfaced in the early 1990s, when it was revealed that can-
didates for neonatal heart transplants were being identified prenatally and then
being placed on waiting lists immediately, while they were still fetuses.29 Because
time accumulated on a waiting list gives a candidate extra points, such a practice
would offer a significant advantage. In this case, prenatal listing was made possible
by the ability to diagnose hypoplastic left heart syndrome (HLHS) in utero; but such
early diagnosis is not uniformly distributed in the United States, and early listing
of babies diagnosed in utero seemed unfair to babies who were not diagnosed until
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252 Chapter 11 The God Committee
birth. Moreover, fetuses with HLHS remain relatively safe while they are in the
womb, whereas at birth HLHS babies are almost always at great risk and are in
neonatal intensive care units (NICUs). For these reasons, UNOS changed its policy
in June 1992 and put fetuses on a separate list from babies. UNOS also decided to
allocate a heart to a fetus only when no baby could use it.
Retransplants
Retransplantation of the same patient raises other issues about justice. Since patients
often reject transplanted organs, a second or third transplant can be done. But is
it fair to rescue a particular patient with a second heart or kidney when thousands
of others never get a first one? Shouldn’t patients get a second organ only when
everyone has had a chance at one?
As we shall see later, retransplants raise a profound conflict about justice. The
rule of rescue involved here (discussed soon) is really a particular instance of the
general conflict between impartial ethical theories and partial ones.
UNOS treats patients waiting for retransplants as first-time patients. This does
not lead to the best outcomes. Nearly 82 percent of first-time transplants survive
one year, but only 57 percent of retransplants do. Retransplanted patients fare worse
than first-transplant patients because they usually are sicker.
Let us call organ-utilitarians those who see justice as creating the greatest years
of life per donated organ. Under such constraints, UNOS should give first-time
patients priority over retransplant patients.
But maximal years per organ is not the only thing to value. Shouldn’t medicine
save those who are about to die? Shouldn’t others, who are less sick, wait?
Transplant teams bond with patients and find it difficult not to save them.
Consider a hypothetical 41-year-old Judy Rogers, a former bank teller now on dial-
ysis and disability who suffers severe depression. This is understandable: The med-
ical team has worked very hard over many years to save Judy’s life, and when she
rejects an organ, the team does not want to be forced by UNOS to watch her die.
Medical staffs would see this as patient abandonment. More simply, nurses, medical
students, and the surgeon know Judy personally, whereas new patients are abstrac-
tions to them.
But it is reasonable to ask why identified patients should take priority over new
patients: A new patient may benefit more and be more meritorious. Moreover, if
the medical teams are allowed to select who gets a new organ, patients who are
better at forming relationships with transplant teams will be favored.30 And it may
be true that patients who are beautiful, charismatic, privileged, white, and socially
connected fare better with staff than those lacking these characteristics.
Although transplant teams identify with retransplanted patients, others may
identify with the patients who are waiting. Consider a hypothetical Max Loftin, a
53-year-old accountant with severe depression and a dialysis patient waiting for a
kidney transplant. A new kidney might cure his depression. But if present patients
in hospitals get all next month’s available kidneys as second or third retransplants,
Mr. Loftin will die, a nameless victim never known to the hospital’s staff.
An actual patient named Ronnie DeSillers in Miami, who received three liver
transplants, caused bitter feelings among patients waiting for a liver. Because his
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Chapter 11 The God Committee 253
father knew how to work the system, Danny Canal of Wheaton, Maryland, in 1998
received three quadruple organ transplants (the first due to multiple-listing). Did 11
other people deserve never to get an organ so Danny could get 12?
The Rule of Rescue
The rule of rescue, named by bioethicist Albert Jonsen, refers to giving scarce med-
ical resources to an identified patient, rather than to equally deserving but anony-
mous people.31 We can cite countless examples of this rule.
Frequently, the media identify the person. If reporters cover the plight of a small
girl trapped in a deep well, thousands will send dollars for her rescue; meanwhile,
reporters may not cover the plight of another young boy in peril, he is not rescued,
and he dies. Is this just?
In 1982, hospital administrator Charles Fiske interrupted a televised news con-
ference to successfully plead for a liver donation for his daughter, Jamie. For more
than 25 years since, desperate parents have used such methods to save their chil-
dren in organ failure. Thirty years later, Fiske’s daughter, Jamie, was still alive.
Belding Scribner illustrated this in rescuing Ernie Crowfeather.
In 2013, the mother of 10-year-old, cystic fibrosis patient, Sarah Murnaghan,
worked national media to draw attention to UNOS’s practice of listing children
under 14 on a separate list from adults for lung transplants.32 UNOS had excluded
such children because adult lungs must be cut down to fit children, but a judge
overruled UNOS. Subsequently, an exception was made and Sarah received not one
but, after the first two transplanted lungs failed, altogether four lungs. A year later,
Sarah could breathe off a ventilator sometimes for 12 hours a day.
From the perspective of distributive justice, why is the rule of rescue problem-
atic? Why is it an unjust way to distribute organs?
First, television often identifies the rescued person, but who gets to live shouldn’t
be decided by who gets on television. But the media favor people who look good,
which means cute, articulate people and families who know how to work reporters.
It is not a trivial fact that Sarah M was a cute white girl. But who gets to live
shouldn’t be decided by who is most photogenic.
The rule of rescue makes journalists and their editors the gatekeepers of life
and death. The rule of rescue replaces the God Committee with the assignment
editor. (“Oh, we just did a child transplant story. Let’s wait a month before we do
another.”)
And for every identifiable person who is saved, there are a dozen anonymous
patients who are lost. If one life is worth the same as another, why is identification
by a newspaper important?
When a physician admits a hypothetical Karen Smith to a hospital, Karen
becomes identified as a candidate for rescue. The medical team then bonds to the
smart, gregarious Karen and bestows on her a million dollars of publicly funded
resources. Again, if there are many worthy candidates for a scarce medical resource,
who gets to live shouldn’t be decided by the likes of hospital staff or the whims of
physicians in admitting patients.
Hospitals frequently set up rules and committees to prevent just this sort of
thing. Left-ventricle assist devices (LVADs) can be bridges to heart transplants, but
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254 Chapter 11 The God Committee
if hearts don’t materialize, how long can a hospital keep patients on LVADs,
especially if the patients have no coverage? The physician who initially admits his
patient for an LVAD may feel like he’s saved a life and is a hero, but he may be a
villain to the hospital’s administration, which must pay for the resulting care.
As said, the conflict here lies between impartial ethical theories and partialist
ones. On one side, we have Kantian ethics and utilitarianism, which treat everyone
the same and which oppose the rule of rescue. On the other side, we have the
Ethics of Care that values “partial” or particular relationships. Our moral intuitions
stem from both kinds of theories, which explains why they pull us in different
directions. (The Ethics of Care, Kantian ethics, and utilitarianism are discussed
more in Chapter 1 on ethical theories.)
It is precisely the pull of partialist theories that attracts us to rescuing the
patient before us in the hospital bed. It is precisely that pull that impartial theories
urge us to resist in seeking a more impartial way of deciding who gets into the
hospital bed in the first place. Partial theories implicitly discount the value of
unidentified people not in the circle of concern of the medical team.
Sickest First, UNOS, and the Rule of Rescue
As we have seen, utilitarianism clashes with the Ethics of Care over retransplants
and the same clash looms larger in how UNOS allocates organs. One partialist
theory is to allocate organs according to “sickest first” or “give the organ first to
the patient most likely to otherwise die.”
A utilitarian wanting to maximize human life in the lifeboat for the long row
to Africa selects the strongest rowers, tosses the weak, sick, and elderly overboard,
and eats the dog. Similarly, utilitarians wanting maximal years per organ allocate
organs only to first-timers and allow no retransplants. For impartial ethical theories
such as utilitarianism or Kantian ethics, one human life counts as much as another,
regardless of whether that life is my father, my neighbor, my patient, my fellow
citizen, or a complete stranger.
Piggybacking this logic on some facts leads to a surprising conclusion: Giving
organs to the sickest patients does not maximize the most years per life per organ.
Why? Because some patients are too near death. When they die, the organs are
wasted.
“But what if they don’t die?” others reply. “Then they have been rescued and
saved.” And some patients will, in fact, be saved this way.
But the best way to get the most organs per life is to give the organ to moder-
ately sick people just experiencing organ failure. In that way, with a limited supply,
more people live longer.
Congress, many surgeons, and the families of many patients rejected the impar-
tial system. As their loved one grows closer to death, they grasp for life. Even if it
wastes an organ, they feel that after waiting for years on the list for an organ, they
deserve their one chance to live.
So strong is this feeling that in the fall of 2000, Congress mandated that the
UNOS allocate organs on the basis of sickest first. As the Fact Sheet on the UNOS
website states, “For heart, liver and intestinal organs, patients whose medical status
is most urgent receive priority over those whose medical status is not as urgent.”33
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Chapter 11 The God Committee 255
Howard Eisen, head of Temple University Hospital’s heart transplant program,
disapproves, “What you’re doing is giving hearts to people who will do less well
with them. People are waiting longer, so they get sicker, and end up getting two
operations when they would otherwise need one.”34
Personal responsibility for health also could enter here. “Give first to the sickest
patients” is a standard of distributive justice, but is fair to others down the line who
took better care of their bodies and therefore are not now as sick?
Living Donors
For many decades, an ethical bright line existed in transplant surgery of, “First, do
no harm,” which in part meant “Do not harm one person to benefit another.” In
1954, Dr. Joseph Murray successfully transplanted a kidney from Ronald Herrick,
a 23-year-old man, into his identical twin Richard, who was dying of kidney disease.
Since the transplantation involved identical twins, immunological rejection posed
no problem, and Richard accepted the transplanted kidney. Since no compatibility
barriers existed, and since a brother’s life was saved, the benefits of this surgery
appeared to outweigh possible harms to the donor, and consequently, ethical con-
cerns were overridden. This precedent demonstrated the viability of live organ
transplantation and paved the way for alternatives to cadaveric transplantation.35
By 2003, the number of live donors had surpassed the number of cadaver
donors (brain-dead patients whose relatives consented to harvesting their organs).
In that year, transplant surgery leapt from making one exception—an exception from
a traditional rule in order to save a life—to letting people volunteer to have surgeons
risk harm to them to benefit another. By 2013, organs from cadavers had again
surpassed live donors, due to increased efforts to get drivers applying for licenses
to indicate their organ-donor status.
In 1989, the first transplant occurred from a healthy parent (a mother) to a
daughter—from Teri Smith to Alyssa Smith. While he was removing the lobe of Teri’s
liver, surgeon Christoph Broelsch of the University of Chicago nicked Teri’s spleen
and had to excise it. Broelsch called the loss of Teri’s spleen a “major complication,”
saying it gave him “the sickest feeling to have trouble with the first patient.”36
Also in 1989, Marissa Ayala was conceived to provide stem cells for her sister
Anissa, who had leukemia.37 Pre-implantation genetic diagnosis (PGD), the practice
of analyzing artificially fertilized embryos, allowed Anissa’s parents to choose an
embryo that could serve as a compatible bone marrow donor for Anissa. Should
Marissa have been conceived as a resource for Anissa, what is now called a savior
sibling? Jodi Picoult’s novel My Sister’s Keeper brought to life the tensions in this
scenario. Marissa’s bone marrow was taken and given to Anissa, which saved Anissa’s
life, but does one happy result justify creating 1,000 more children to serve as
resources for dying siblings?
In 1993, transplant centers accepted and recruited adult relatives of children
for organ transplants, and Nilda Rodríguez gave one-quarter of her liver to her sick
granddaughter. In the same year, James and Barbara Sewell each donated part of a
lung to their 22-year-old daughter, whose own lungs had been damaged by cystic
fibrosis, a genetic disease that is typically fatal by age 30 (the patient usually dies
from infection and collapse of the lungs). By 1997, as the practice became more
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256 Chapter 11 The God Committee
accepted, California surgeon Vaughn Starnes had taken lobes from 76 donors for
37 recipients. One commentator in the same year noted that the practice was “eth-
ically problematic,” implying that a norm had not yet been established.
From 1990 to 2002, surgeons in St. Louis performed 207 lung transplants on
190 children.38 All 190 children were under age 18, 121 were ages 10–18, and the
most common reason for transplantation was cystic fibrosis. This means that sur-
geons took lung lobes from 207 healthy adults for these children. Italian surgeons
reported similar results for 1996 to 2002, giving 55 people of mean age 25 years a
lung transplant.39
Something similar happened with liver transplantation among relatives. From
a few isolated cases in 1993–1994, such requests eventually became the norm:
“There now exists an ethical imperative to develop this [live-donor donation of
livers],” said Jean Edmond, M.D., director of liver transplantation at New York
Presbyterian Hospital in 1999.40 Between 1996 and 1999, surgeons performed over
70 transplants among adult relatives, with 45 in the first half of 1999, showing
exponential growth.
In 1999, officials confirmed the first death from adult-to-adult liver donation and
they estimated that two to three other adults had died from donating parts of organs
to their children.41 By 2003, at least five people had died.42 Exact figures are unknown.
The surgical journal Transplantation reported in late 2002 that 56 people who
had previously been living organ donors later required a kidney transplant.43 Of the
56 people, only 43 received transplants, and of these, 36 worked. Of these 56 can-
didates, two died while waiting for an organ and one died after the operation.
Consider the sad case of Walter Wood, 45, who donated to his brother under
the impression that kidney transplants were relatively safe and done only to save a
life. Wood experienced an unexpected outcome during surgery: his abdominal mus-
cles ruptured. He has since been in constant pain and has been unable to perform
the simplest of tasks. As a result of his severe disability, Walter lost his job, had to
sell his house, and approached bankruptcy. “I’m in constant pain from the surgeries
I’ve had. I can’t even move around in bed,” Wood says.
Protecting patients such as Walter Wood is a problem in the system, because
the transplant team understandably focuses on the sick recipient of the organ, not
the donor. Not only that, transplants occur only on people who have medical cov-
erage, so the transplant team and its hospital get paid for medical services to the
recipient. In contrast, they receive nothing for caring for donors and give such care
at a financial loss. In sum, transplant teams have asymmetrical relationships to
donors and to recipients.
After he donated part of his liver to his brother in 2002, reporter Mike Hurewitz
of Albany, New York, died a gruesome death at Mount Sinai Hospital in New York
City (because he was a reporter, his death generated lots of publicity). Also, 69-year-old
Barbara Tarrant from North Carolina disastrously donated a kidney to her mentally
retarded son and wound up paralyzed on her left side and without coherent speech.44
Widely regarded as heroic in the popular media, living donor transplantation
carries real dangers. Until recently, no one then knew how many donors have ended
up like Mike Hurewitz, Barbara Tarrant, or Walter Wood. Why? Because living-donor
transplant centers then had no obligation to report deaths or injuries to the UNOS,
nor did UNOS have any legal obligation to monitor such deaths and injuries.
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Chapter 11 The God Committee 257
Previously, no hospital, transplant center, or medical department tracked deaths
and injuries from live donors such as Walter Wood. Once donors leave the hospital,
they were on their own—for medical care, for insurance, for follow-up.
Given the lack of such studies, an obvious question arose then of how donors
could give informed consent about the risks of donation. Finally, after nearly a
decade of uncertainty, a 2009 study at the University of Minnesota that tracked
mainly white, middle-class donors found only slightly more problems with donors
than non-donors, although nonwhite donors seemed to fare worse.45 In 2010, UNOS
started to track problems of live organ-donors and to provide more realistic data to
potential donors. Nevertheless, a report in 2012 by National Public Radio discovered
that after two years, transplant centers lost track of two-thirds of donors and, thus,
had no idea of whether donating had caused them any harm.46
In 2014, over 100,000 Americans waited for a kidney transplant and 17,000 got
one: 11,500 from cadavers and 5,500 from live, adult donors.47
Costs and the Medical Commons
According to Transplant Living, a service of UNOS, the total cost of a liver trans-
plant is $577,100.48 This includes the cost of pre- and post-transplant care and test-
ing, surgery, procurement of organ from donor, immunosuppressants, and more.
The total cost in 2011 of a kidney transplant was $262,900. The total cost of a heart
transplant was $997,700, and the cost of a heart-lung transplant was $1,148,400.
During the 1970s, the biologist Garrett Hardin discussed the tragedy of the
commons, a situation in which no one reduces his or her consumption of some
public resource until the resource becomes so ravaged that it disappears. The con-
cept originated centuries ago in England, when pastures held in common were
overgrazed: In each town, each shepherd increased his own flock until there were
so many animals that the commons could no longer support them. The lesson is
that the unregulated pursuit of self-interest leads to destruction of public resources.
Former Colorado governor Richard Lamm agrees. He has emphasized that
Americans cannot continue such extravagant policies and do well. In particular, as
a matter of intergenerational justice, America cannot fund extravagant care for the
elderly on the backs of the working young: “When a society faces fiscal reality and
seeks to optimize its dollars, it not only starts on the road to financial sanity, but
it also brings dramatic change to existing medical practices. Dialysis and transplan-
tation will undoubtedly undergo major change.”49
Lamm continues, “Dr. Thomas Starzl recently gave a liver transplant to a 76-year-
old woman. It cost $240,000. Dr. Starzl should understand that with the average U.S.
family making $24,000 a year, he has sentenced 10 U.S. families to work all year so
that he could transplant a 76-year-old woman.” (Chapter 17 discusses ethical issues
in medical finance.)
Non-Heart-Beating Organ Transplantation
The issue of exactly how a patient, whose body is a potential source of organs, gets
declared dead has simmered in the background of organ transplantation for nearly
half a century. Between 1954 and 1967, organs for transplantation either came from
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258 Chapter 11 The God Committee
living, related donors (e.g., a kidney from one twin to another) or from patients who
had died (cadavers). Physicians then declared patients dead by cardiopulmonary
criteria—that is, the hearts of patients stopped beating and the patients stopped
breathing. These criteria were not ideal because when tissue no longer receives blood,
damage occurs very fast, and such damage often occurs while the heart is stopping.
With the Harvard definition of brain death in 1967, declaration of death in
cadavers switched to neocortical criteria, allowing retrieval of organs from cadavers
who had their breathing and circulation maintained artificially by ventilators.
Because obtaining organs from patients declared dead this way did not injure
organs, and because all states passed neocortical brain-death laws, procurement of
organs for transplantation switched almost entirely to use of the neocortical stan-
dard. After that, surgeons obtained organs in better shape for the receiving patient.
In recent years, improvements in automobile safety have reduced the pool of
such bodies, while burgeoning numbers of transplant programs have learned to
transplant sicker people. Supply has dropped, while demand has soared.
In 1993, the University of Pittsburgh Medical Center developed a protocol to
start obtaining organs from patients who were declared dead by the old cardio-
pulmonary criteria. Their novel idea was to manage death in the small class of
patients where the underlying illness causing death has not damaged the organ and
where the patient or the family has signed a “do not resuscitate” (DNR) order.
In this protocol, a patient on a respirator is moved to the operating room where
his or her respirator is removed, breathing stops, the surgical team waits a few
minutes for breathing to resume, the patient is declared dead, and then his or her
organs are removed.
The official name of this protocol is the non-heart-beating cadaver donor
(NHBCD). This phrase is not felicitous, for it seems to be an oxymoron (can a cadaver
be a “donor”?).
The NHBCD protocol declares death after two minutes during which no pulse
is detected and after ventricular fibrillation, asystole, or electromechanical dissoci-
ation occurs. It allows drugs to be administered, such as vasodilators and anticoag-
ulants, which are given solely to maximize health of organs to be transplanted. It
declares that death occurs when there is irreversible loss of cardiac function, as
opposed to the neocortical standard, which declares that death occurs when there
is irreversible loss of all brain activity, including brain stem activity.
A 1997 study requested of the Institute of Medicine (IOM) by the Secretary
of Health and Human Services distinguished between controlled and uncontrolled
NHBCDs. Before the Harvard, neocortical definition of death was adopted, patients
died in “uncontrolled” ways as their hearts stopped beating and injured their other
organs. In the Pittsburgh protocol, the IOM said, “The (deaths of) donors are con-
trolled because the timing and thus the process of donation are controlled through
the timing of (withdrawal of) life support.” These patients generally suffer from
severe head injuries or progressive neurological illness.
One aspect of the new protocol that some people have trouble accepting is that
the judgment of irreversibility differs from the judgment about lack of neocortical
activity. The only way to know if such changes truly are irreversible is to start car-
diopulmonary resuscitation (CPR), but in the Pittsburgh protocol, of course, the
family and/or competent patient must explicitly decline CPR.
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Chapter 11 The God Committee 259
This point must be stressed. Consent of the patient distinguishes physician –
assisted dying from murder. If the family has not consented to the Pittsburgh
protocol, staff might be charged with accelerating death to harvest organs.
Another point to stress here is that CPR on a dying or elderly patient is a brutal
way to die and often involves breaking chest bones. It is a peculiar form of torture
practiced today. Fewer than 15 percent of hospital patients who receive CPR ever
leave the hospital.50 If a family understands these facts, it might elect to forgo CPR
and allow the Pittsburgh protocol.
Hence the essential idea of the NHBCD protocol is: because the family, the
patient, and the physicians believe the patient is going to die soon, why not manage
the death to create life for others? For the family, something good may come out
of the death—the gift of life to another person.
A 1993 conference explored the ethical issues of the Pittsburgh protocol but
did not achieve a consensus. Although all agreed that the dead-donor rule should
continue—that is, organs should be taken only from dead patients—they could not
agree on whether families should be allowed to consent to organ procurement
under the new protocol. “The Pittsburgh protocol gives an interpretation of irre-
versible that comes down to a low probability of auto-resuscitation and excludes
the possibility of interventions that could restart the heart.”51
But what about the ethical issue where families consented but did not under-
stand the issues? Critics object on Kantian grounds that the patient is not being
treated as “an end in himself.” Alan Weisbard argued that the Pittsburgh protocol
“indirectly brings about the death of some people to benefit others.” Medical sociol-
ogist Renée Fox thinks it “morally offensive” to ask families, nurses, and residents
to be involved in this effort, and criticizes the “macabre” public policy of champi-
oning maximal organ transplantation.52
In 1997, the controversy made national news in the worst way when a bioethics
professor in Cleveland went to a district attorney, charging that transplant surgeons
at the famous Cleveland Clinic were about to violate the law. The headline of the
Cleveland Plain Dealer was “‘Murder, She Said” and a few days later, 60 Minutes
interviewed bioethicist Mary Ellen Waithe and broke the story nationally. Other
bioethicists criticized Waithe’s elevation of a dispute in public policy to charges of
illegal activities with overtones of criminal mischief.
The 60 Minutes story on the Cleveland Clinic revealed that the University of
Wisconsin Medical Center had been using an NHBCD controlled-death protocol to
harvest organs for more than 20 years. During this show, a point of contention was
whether the administration of heparin and regitine accelerated the death of donors.
Heparin, a blood thinner, prevents clot formation, and regitine dilates blood vessels,
keeping organs perfused with blood.
Surgeons at centers using NHBCD hotly deny the claim that administration of
heparin and regitine hastens death. The IOM study vindicated such surgeons, not-
ing the NHBCD protocols across the country divided evenly between allowing the
use at some stage in the donation process of one or both of these agents and
expressly prohibiting or not mentioning them.
In most cases, the IOM report allows careful administration of these drugs.
Nevertheless, because under certain circumstances in certain patients, there is a
concern that these agents might be harmful, this report recommends case-by-case
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260 Chapter 11 The God Committee
decisions on the use of anticoagulants and vasodilators and consideration of addi-
tional safeguards such as involvement of the patients’ attending physician in pre-
scribing decisions. The IOM also recommended waiting five minutes, rather than
two, after life support was removed, before declaring death.53
The Scientific Registry of Transplant Recipients, a branch of the U.S. Depart-
ment of Health and Human Services, compiles data on transplants and wants us to
distinguish between “living donors” and “deceased donors.”54 The latter refer to “an
individual whose tissues or organs are donated after his or her death. Such donations
come from two sources: patients who have suffered brain death and patients whose
hearts have irreversibly stopped beating. The latter group is referred to as non-heart-
beating or donation-after-cardiac-death (DCD) donors. Throughout this report, we
have used the term deceased donor instead of cadaveric donor.” Because not all
“deceased donors” are brain-dead by the Harvard criteria, “deceased donor” covers
more sources.
The God Committee, Again
It’s easy to criticize the way other people think about justice and allocate scarce medical
resources. Critics of the God Committee probably couldn’t do a better job themselves.
After all, problem drinkers like Ernie Crowfeather, immature people, and people with
poor personal hygiene fare poorly on dialysis and dialysis nurses often hate them.
Moreover, life on dialysis is not great. It has a high symptom burden, meaning
that quality of life is low. As one nephrologist reports about daily life on dialysis:
Insomnia is extraordinarily common and many [patients] experience severe muscle
cramping and pains of different sorts. Itching is an equally common phenomenon,
along with nausea, vomiting, and poor spirits. Our data indicates that among the
roughly 300,000 patients undergoing dialysis in any given year, about 65,000 (or 23%)
will die.55
Maybe the God Committee correctly considered which people had the strength
to endure these procedures. Today, when everyone gets dialysis, many patients
indirectly commit suicide by failing to comply with regimens or by missing appoint-
ments. The life expectancy for dialysis patients falls between one-eighth and one-
third of the rest of the population, in part because too many patients who are old
and sick get dialyzed.56 As bad as life can be on dialysis, many people can live many
years on dialysis. So technically, an adult who gives one of his or her kidneys to
free someone else from dialysis may not save a life but dramatically improve it. As
Fox and Swazey would say, donation to “save a life” sounds heroic, whereas “dona-
tion to improve quality of life” is less so.
In 2006, a new form of home dialysis became available called Rogosin dialysis
or nocturnal dialysis.57 It requires a $13,000 dialysis machine and a $5,000 water
purifier, but it can be done at home, six nights a week for eight hours each night.
Complying with nocturnal dialysis means not needing to go to dialysis clinics three
times a week for outpatient dialysis under nursing supervision.
As with outpatient dialysis, nocturnal dialysis requires cleanliness and personal
hygiene. Pet hair may clog the machine, so pets are out. At present, patients with
poor hygiene, or those who cannot part with pets, cannot use Rogosin dialysis.
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Chapter 11 The God Committee 261
Because personal responsibility for health is an important criterion for getting this
kind of dialysis, the same ethical issues arose 55 years later as in 1962 with the
original machines in Seattle.
FURTHER READING
Renée Fox and Judith Swazey, Spare Parts: Organ Replacement in American Society, New York:
Oxford University Press, 1992.
Renée Fox and Judith Swazey, The Courage to Fail: A Social View of Organ Transplants and
Dialysis, 2nd ed. rev., Chicago: University of Chicago Press, 1974, 1978.
Thomas Starzl, The Puzzle People: Memoirs of a Transplant Surgeon, Pittsburgh, PA: University
of Pittsburgh Press, 1992.
Institute of Medicine, Non-Heart-Beating Organ Transplantation—Medical and Ethical Issues in
Procurement, Washington, D.C.: National Academy Press, 1997.
DISCUSSION QUESTIONS
1. In getting a transplanted organ that saves your life, which of the following
should a just system of allocation consider?
Whether the patient smoked; whether the patient drank alcohol exten-
sively; whether the patient has medical insurance; whether the patient is rich
and is listed in several medical centers; whether the patient has already received
one organ transplant.
2. Isn’t it human nature to rescue the sickest first? To stave off death from someone
you know? Do we want surgeons to be bureaucratic robots or to have a heart?
What’s wrong with the rule of rescue and caring for patients who are known?
3. Even if people have a small amount of free will, shouldn’t the system act as if
they had lots of it? By rewarding good behavior and punishing bad behavior,
doesn’t the system itself become a major causal factor in how people behave?
On the other hand, if it rescues unhealthy behavior, doesn’t the system under-
mine healthy behavior and reward unhealthy habits?
4. Who is going to pay for organ transplants if more and more people keep getting
them? When 40 million Americans lack basic coverage, isn’t this luxurious med-
icine for the well-off?
5. If you are a physician or a nurse and a patient doesn’t want to cooperate—if he
or she keeps smoking, eating five sausage sandwiches for breakfast each day,
and drinking a bottle of wine with dinner each night—and his or her health
gets worse and worse, are you justified in getting mad at him or her? Or does
getting mad at him or her just cause the patient to avoid coming back to see
you? Is moralism a tool for changing behavior or is it a primitive venting of
feelings by the health provider?
6. Do families of the NHBCD protocol understand what’s going on? Do they believe
that not every possible effort will be made to keep their son alive and that his
death is being managed so that his organs can be transplanted in the best shape?
Even if they don’t understand all this, is that bad? If the patient is going to die
anyway, isn’t this a way of getting something good out of the process?
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262 Chapter 11 The God Committee
NOTES
1. James Childress, “Who Shall Live When Not All Can Live?” Soundings 53, no. 4 (Winter 1970).
2. Belding Scribner, unpublished manuscript, quoted in Renée Fox and Judith Swazey, The Courage to
Fail: A Social View of Organ Transplants and Dialysis, 2nd ed. rev., University of Chicago Press, Chicago,
IL, 1974, 1978, p. 227.
3. Fox and Swazey, The Courage to Fail, p. 235.
4. One of the first organized interdisciplinary conferences to discuss such issues took place in 1967,
funded by a company called CIBA.
5. H. M. Schmeck, Jr., “Panel Holds Life-or-Death Vote in Allotting of Artificial Kidney,” New York
Times, May 6, 1962, p. 1, 83.
6. Shana Alexander, personal communication to author, “The Birth of Bioethics” conference, Seattle,
WA, University of Washington Medical School, September 24, 1992.
7. Shana Alexander, “They Decide Who Lives, Who Dies: Medical Miracle Puts a Burden on a Small
Committee,” Life 53, no. 102 (November 9, 1962), pp. 102–125.
8. Fox and Swazey, The Courage to Fail, p. 209.
9. Judith Swazey at “The Birth of Bioethics” conference, Seattle, WA, University of Washington
Medical School, September 24, 1992.
10. David Sanders and Jesse Dukeminier, “Medical Advance and Legal Lag: Hemodialysis and Kidney
Transplantation,” UCLA Law Review 15 (1968), pp. 357–412.
11. UNOS, “Data,” https://www.unos.org/data/ (accessed February 14, 2016).
12. Dale H. Cowan, ed., Human Organ Transplantation: Social, Medical-Legal, Regulatory, and Reimbursement
Issues, Health Administration Press, Ann Arbor, MI, 1987, p. 60.
13. Fox and Swazey, The Courage to Fail, p. 232.
14. Sanders and Dukeminier, “Medical Advance and Legal Lag.”
15. George Annas, “The Prostitute, the Playboy, and the Poet: Rationing Schemes for Organ Transplan-
tation,” American Journal of Public Health 75, no. 2 (1985), pp. 187–189.
16. Fox and Swazey, The Courage to Fail, Chapter 9.
17. Ibid., p. 234.
18. Herbert Fingarette, Heavy Drinking, Berkeley, CA, University of California Press, 1988.
19. Alvin Moss and Mark Seigler, “Should Alcoholics Compete Equally for Liver Transplantation?”
Journal of the American Medical Association 265, no. 10 (March 13, 1992), p. 1295.
20. C. Cohen and M. Benjamin, “Alcoholics and Liver Transplantation,” Journal of the American Medical
Association 265, no. 10 (March 13, 1992), pp. 1295–1301.
21. Nicholas Rescher, “The Allocation of Exotic Medical Lifesaving Therapy,” Ethics 79 (April 1969),
pp. 173–186.
22. Tracy E. Miller, “Multiple Listing for Organ Transplantation: Autonomy Unbounded,” Kennedy Institute
of Ethics Journal 2, no. 1 (March 1992), pp. 43–57.
23. Ronald Munson, Raising the Dead, Oxford University Press, New York, 2002, pp. 26–45.
24. Ibid., p. 29.
25. Ibid., p. 30.
26. Ibid., p. 36.
27. Ibid., p. 45.
28. Miller, “Multiple Listing for Organ Transplantation.”
29. M. Michaels et al., “Ethical Considerations in Listing Fetuses as Candidates for Neonatal Heart Trans-
plantation,” Journal of the American Medical Association 269, no. 3 (January 20, 1993), pp. 401–402.
30. Renée Fox and Judith Swazey, Spare Parts: Organ Replacement in American Society, Oxford University
Press, New York, 1992.
31. Albert R. Jonsen, “Bentham in a Box,” Law, Medicine and Health Care 14 (1986), pp. 172–174.
pen07945_ch11_243-263.indd 262 9/8/16 9:52 AM
Chapter 11 The God Committee 263
32. http://www.cnn.com/2013/08/26/health/sarah-murnaghan-update/.
33. Newsroom Fact Sheets,” United Network for Organ Sharing, November 21, 2005, https://www
.unos.org/wp-content/uploads/unos/UNOS_FactsFigures .
34. Michael Stoll, “A New Waiting Game for Hearts,” Philadelphia Inquirer, February 7, 2000.
35. Jeffrey Kahn and Susan Parry, “Organ and Tissue Procurement,” Encyclopedia of Bioethics, 3rd ed.,
Macmillan, New York, 2004.
36. A. Bass, “New Liver Transplants; Pressure on Parents,” Boston Globe, December 17, 1989, p. 1, 75;
quoted in Fox and Swazey, Spare Parts.
37. Norman Fost, “Conception for Donation,” Journal of the American Medical Association 291, no. 17
(May 5, 2004), p. 2126.
38. Charles B. Huddleston, et al., “Lung Transplantation in Children,” Annals of Surgery 236, no. 3
(September 2002), pp. 270–276.
39. S. Quattrucci et al., “Lung Transplantation for Cystic Fibrosis: 6-Year Follow-Up,” Journal of Cystic
Fibrosis 4, no. 2 (May 2005), pp. 107–114.
40. V. Fourbister, “Living Donors Dramatize Risk vs. Need,” American Medical News, September 20,
1999, p. 1.
41. Dr. Jean Edmond in V. Fourbister, “Living Donors Dramatize Risk vs. Need,” American Medical
News, September 20, 1999, p. 1, confirmed the death.
42. Debra Shelton’s update is “Donor Has Physical Pain, But Peace about Decision,” and “Man’s Second
Chance Hasn’t Turned Out Like He Expected,” St. Louis Post-Dispatch, December 21, 2003.
43. Mary Ellison et al., “Living Kidney Donors in Need of Kidney Transplants,” Transplantation, Novem-
ber 15, 2002, pp. 1349–1351. These 56 patients were out of 14,000 patients. Also, UNOS elevates
anyone who previously donated a kidney—but now needs one—to the top of the list.
44. Carole Tarrant, “For Family, Selfless Act Goes Awry,” New York Times, March 12, 2002.
45. HN Ibrahim et al., “Long-term Consequences of Kidney Donation,” New England Journal of Medicine
360 (2009), pp. 459–469.
46. Gretchen Cuda-Kroen, “Organ Donation Has Consequences Some Donors Aren’t Prepared For,”
National Public Radio, July 2, 2012, http://www.npr.org/sections/health-shots/2012/07/
02/155979681/organ-donation-has-consequences-some-donors-arent-prepared-for (accessed
February 14, 2016).
47. National Kidney Foundation, “Organ Donation and Transplantation Statistics,” https://www.kidney.
org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats (accessed February 14,
2016).
48. https://www.unos.org/policy/?gclid=CK6zgKGiuM4CFdccgQodKuwKIg.
49. Richard D. Lamm, “Health Care as Economic Cancer,” Dialysis and Transplantation 16 (1987), p. 433.
50. Fox and Swazey, Spare Parts, p. 10.
51. Robert Arnold and Stuart Youngner, “Back to the Future: Obtaining Organs from Non-Heart Beat-
ing Cadavers,” Kennedy Institute of Ethics Journals 3, no. 2, 1993, p. 106.
52. Ibid.
53. Interview, Good Morning America, July 9, 1993.
54. http://srtr.transplant.hrsa.gov/annual_reports/2011/.
55. Walter Robinson, Medical Ethics, Lahey Clinic Medical Ethics Newsletter 11, no. 2 (Spring 2004), p. 8.
56. Ibid., p. 6.
57. Peter Landers, “Longer Dialysis Offers New Hope But Poses a Dilemma,” Wall Street Journal, Octo-
ber 2, 2003, p. A1.
pen07945_ch11_243-263.indd 263 9/8/16 9:52 AM
http://www.cnn.com/2013/08/26/health/sarah-murnaghan-update/
http://srtr.transplant.hrsa.gov/annual_reports/2011/
https://www.unos.org/wp-content/uploads/unos/UNOS_FactsFigures
https://www.unos.org/wp-content/uploads/unos/UNOS_FactsFigures
http://www.npr.org/sections/health-shots/2012/07/
https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats
https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats
This chapter discusses the case of Baby Fae, who briefly lived with a baboon’s
heart; the case of Baby Gabriel, an anencephalic baby whose heart went to another
infant; the case of the anencephalic Baby Theresa, whose parents wanted to
donate her heart to another baby; and sacrifice surgeries, cases about separating
conjoined twins where one is sacrificed to help the other. This chapter discusses
whether dying babies should be used in experimental medicine, even to help
other babies.
1984: BABY FAE
On October 14, 1984, doctors delivered Baby Fae in California. Three weeks pre-
mature, she weighed five pounds. Noticing her pallor, the pediatrician transferred
her to Loma Linda Hospital, a Seventh-Day Adventist facility near Riverside. Phy-
sicians there diagnosed her with hypoplastic left heart syndrome (HLHS).
Affecting 1 in 10,000 babies, HLHS leaves the normally powerful left side of
the heart and aorta underdeveloped and too weak to pump blood. HLHS almost
always kills infants within two weeks.
Fae’s mother, a 23-year-old, unmarried, unemployed Roman Catholic with no
medical insurance, lived with the baby’s father, a 35-year-old laborer. The two had
a son and had lived together for five years, but at Fae’s birth, they separated.
At Loma Linda, doctors told the mother that Fae would soon die; they kept Fae
overnight in the hospital and then released her. The mother had Fae baptized and
took her to a motel to wait for death. Leonard Bailey, the 41-year-old chief of pedi-
atric surgery at Loma Linda, then suggested that Baby Fae could receive a xenograft
from a baboon.
Transplantation of an organ from one species to another is called a xenograft.
In 1964, James Hardy implanted a chimpanzee heart into a 68-year-old man, who
lived 90 minutes.1 During the 1960s, Thomas Starzl and Keith Reemtsma performed
six transplants each with simian kidneys, but eventually abandoned the projects
because such kidneys worked at best only two months.2 In 1975, a British
C H A P T E R 1 2
Using One Baby for Another
Babies Fae, Gabriel, and Theresa and Conjoined Twins
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Chapter 12 Using One Baby for Another 265
cardiologist connected veins and arteries of a dying 1-year-old boy to a live baboon,
neither of whom lived through the operation. In 1977, Christiaan Barnard piggy-
backed a baboon’s heart next to the heart of a 25-year-old Italian woman, who lived
300 minutes; he later used the same technique to implant a chimpanzee heart in a
59-year-old man who lived four days.
Bailey had been aggressively pursuing heart xenografts for seven years, per-
forming about 160 of them, “mostly on sheep and goats, none of whom survived
more than six months.”3 During the previous year, Loma Linda’s Institutional
Review Board (IRB) had granted Bailey permission to perform five xenografts.
On October 19, Bailey readmitted Baby Fae and placed her on a respirator,
then discussed the operation with Fae’s mother, father, and grandmother. Both
parents then signed a consent form, which had been reviewed in great detail by
the IRB.
Bailey’s immunologist, Sandra Nehlsen-Cannarella, began antigen-typing tests
to find the best match for Fae among potential baboon donors. These tests took six
days. Using Fae’s reaction to her own blood and tissue as a control, Nehlsen-
Cannarella tested various beings for compatibility: Baby Fae’s mother (who had a
weak immune reaction), some lab workers (strong reaction), herself (strong reac-
tion), three baboons (strong reaction), and three additional baboons (weak reaction).
A baboon named Goobers, a 9-month-old female from the Foundation for Biomed-
ical Research in Texas, had a “very, very weak” reaction, so she became the source
of the xenograft.4
Human blood strongly resembles other primates’ blood, thus we might expect
to find some close matches of blood types between humans and primates. The fact
that a baboon heart could be used at all indicates a common ancestor of humans
and primates. Moreover, one-third of humans have a preformed antibody against
tissue from other humans. About 70 percent of humans also have a preformed
antibody against baboon tissue; Baby Fae was among the 30 percent who did not.
Bailey gave this fact considerable weight, arguing that previous ignorance about
human–baboon matching explained Hardy’s earlier failures with xenografts.
But because chimpanzees are closer to humans in evolution, Bailey was once
asked why he had picked a baboon rather than a chimpanzee. He replied, “Er, I
find that difficult to answer. You see, I don’t believe in evolution.”5
On October 26, the tissue-typing tests arrived, and Bailey said Baby Fae’s heart
was dying and her lungs were swelling with fluid. Whether Fae was dying at this
point is important: According to the hospital’s spokesperson, a baboon heart was
used because there was no time to find a compatible human heart, so the transplant
had to take place immediately.
Bailey placed Fae on a heart-lung machine that lowered her blood temperature
to 68 degrees. Meanwhile, he sedated Goobers and excised her walnut-sized heart.
He then removed Fae’s defective heart and replaced it with Goobers’s healthy one.
Over the next four hours, he connected the transplanted heart and transplanted
arteries. Then the heart-lung machine raised Fae’s temperature to 98 degrees, and
Goobers’s heart began to beat spontaneously inside Fae.
On October 29, nurses weaned Fae from her respirator. On November 5, Bailey
predicted that the animal heart would grow with Fae and that she might celebrate
her 20th birthday.
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Two other surgeons who had grabbed fame chimed in. Christiaan Barnard pre-
dicted that soon medicine would have baboon farms for simian xenografts. William
DeVries said, “I really have sympathy for what [Bailey and his colleagues] are going
through.”6
Two weeks after surgery, Fae showed the first signs of rejection of the donor
heart. Soon she deteriorated and went back on a respirator.
On November 15, Fae developed a heart blockage and renal failure; Bailey
started closed-heart massage and dialysis. She then died, having lived 21 days with
her baboon heart.
Bailey attempted no more xenografts, but other surgeons did. In 1992, Thomas
Starzl at the University of Pittsburgh transplanted a baboon liver into a 35-year-old
man with hepatitis B. He lived 70 days. The same year, a woman waiting for a
human liver at Cedars-Sinai Medical Center in Los Angeles received a pig liver as
a bridge to a transplant, but she died 32 hours later. In 1993, a man with hepatitis
B received a baboon liver at the University of Pittsburgh; he was 62 years old and
died during the operation.
Surgeons hope that transferring human genes into pigs will allow porcine xeno-
grafts, but none have worked to date. Even when drugs suppress immuno-rejection,
a more lethal hyperacute rejection soon occurs in all xenografts. Since 1905, surgeons
transplanted organs of baboons to humans in 33 operations, but none has
succeeded.
1987: BABY GABRIEL AND BABY HOLC
Like the Terri Schiavo case two decades later, the media extensively covered Baby
Fae’s story, making Bailey and Loma Linda household names. When the xenograft
failed, Bailey used his new fame to create a center for infants with HLHS and hoped
to get donated hearts from anencephalic babies.
In 1987, surgeons and medical ethicists who were sympathetic to Bailey’s goal
met at a conference in Ontario, Canada, and created guidelines, known as the
Ontario Protocol, for using anencephalic babies as organ donors.
Anencephaly is a congenital neurological disorder characterized by absence of
the cerebrum and cerebellum, as well as the top of the skull, resulting in exposure
of the brain stem.7 However, anencephaly “does not mean the complete absence of
the head or brain.”8 Because there is a brain stem, an electroencephalogram can be
taken, and autonomic functions such as breathing and heartbeat may be present.
Anencephalics at birth do not usually meet the Harvard criteria of brain death.
Anencephaly is perhaps the most serious of all birth defects, because the baby
essentially lacks the higher brain necessary for personhood. Anencephalics are born
dying. There is no hope of growth into childhood or adulthood. The open skull is
vulnerable to infection, and most anencephalics die within one week, though in
rare cases some have lived for a year.9
Anencephalics are the major potential source of organs for other babies born
needing organs, creating a major bioethical issue about whether to use anencephalic
babies as such sources. When the recipient is an infant, a donor organ must be very
small, so an infant donor is needed. However, few infants are involved in accidents
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that leave them brain-dead but with healthy organs. Babies who die as a result of
abuse or from sudden infant death syndrome usually have damaged organs that are
unsuitable for transplantation.
The most important guideline of the Ontario Protocol stated that an anenceph-
alic baby could become a donor only after being pronounced dead by the classical
criteria of brain death. Another guideline was that the potential donor could not
be expected to live more than one week; this standard was meant to ensure that
the donor was born dying. At birth, an anencephalic baby was to be put on a res-
pirator to preserve its organs, then taken off every six hours to see if it could breathe
on its own. If a baby failed to breathe for three minutes, it could be declared brain-
dead by three physicians independent of the transplant team.
It should be noted that the respirator is necessary in this protocol, because
the normal course of anencephaly is for the heart gradually to stop beating. This
diminishes blood flow, so the organs become anoxic and start to deteriorate; by
the time the brain stem is dead, the heart and kidneys are no longer useful for
transplantation.
Because maintaining the brain stem may prevent a potential donor from becom-
ing brain-dead, the Ontario Protocol was ill-conceived.
University of California, Los Angeles (UCLA) pediatric neurologist Alan
Shewmon, an authority on anencephaly, criticized the Ontario Protocol. He held
that anencephalic babies should not be used as donors at all, because there was no
consensus in neurology about determining brain death in them.10
In October 1987, a Canadian couple, Karen and Fred Schouten, learned after
eight months of pregnancy that their fetus was anencephalic. They decided to bring
it to term and to donate its organs. When her heart began to fail after birth, the
baby, a girl named Gabriel, was ventilated. The United Network for Organ Sharing
(UNOS) was alerted, but no potential recipients were found in Canada or the north-
eastern United States.
Meanwhile, at Loma Linda Hospital, Bailey was working with another couple,
Gordon and Alice Holc, also Canadian, whose eight-month fetus had HLHS and
needed a heart transplant and who had come to Loma Linda because of publicity
about Bailey’s new program. The Schoutens and Baby Gabriel flew to Loma Linda.
There, the Holcs’s baby, Paul, was prematurely delivered by cesarean section to get
the donor heart. Three hours later, Gabriel Schouten’s heart was excised and trans-
planted into Baby Holc’s chest.
This was the first time a transplant from an anencephalic baby to another infant
resulted in a baby who could grow up and lead a normal life. In gratitude to the
Schoutens and to Bailey, the Holcs named their baby Paul Gabriel Bailey Holc.
Karen Schouten later said that she felt good about her decision and how it had
benefited Baby Holc, “Paul is very special to me because he has a part of our baby
inside him. One day maybe I’ll see him. I hope he comes to me when he’s 30 years
old and says, ‘Hi. Guess what? I made it.’”11
In 1994, NBC aired a TV movie about the case, which ended by showing the
real Paul playing in first grade and hugging the real Karen Schouten. Baby Holc,
aka “The Incredible Holc,” turned 13 in 1998 and was healthy and doing well. In
2011, Karen Schouten thought that the 23-year-old was living in Vancouver, Canada,
and Bailey had heard he was a mechanic there.12
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Bailey never applied the Ontario Protocol in the Schouten-Holc case. Its first
application came at Loma Linda in 1988 with Michael and Brenda Winners and
their anencephalic baby. That case had a sad result: No recipients were found.
This was the first of 12 unsuccessful attempts by Bailey to transplant organs
from anencephalic babies to other babies.13 Of these 12 potential donors, 10 lived
beyond the one-week limit, one could not be matched to a recipient, and in the
remaining case, the physicians decided against a transplant. In 1988, Bailey sus-
pended his transplant program. There was a de facto moratorium on transplants
from anencephalics until the 1992 case of Baby Theresa raised the issue again.
1992: BABY THERESA
In 1991 in Fort Lauderdale, Florida, unmarried Laura Campo and Justin Pearson
conceived a child. Like Fae’s mother, Laura had no medical insurance and did not
see a physician until her 24th week of pregnancy. During her eighth month of
pregnancy, she learned that her fetus was anencephalic.
Because the diagnosis of anencephaly was made so late in Laura Campo’s preg-
nancy, and because Campo’s health was not in danger from the fetus, no legal
abortion could be performed. Campo said that if she had known the diagnosis
earlier, she would have aborted.
After hearing a talk show about organ donation from anencephalic babies,
Campo brought the fetus to birth. Because an anencephalic is likely to have a swol-
len head (hydrocephalus), vaginal delivery may kill it, so Laura underwent a cesar-
ean delivery to keep the organs healthy for transplantation.
Anencephaly occurs today in 1 in 5,000 pregnancies. Over 95 percent of these fetuses
identified prenatally are aborted. Of those carried to term, 60 percent are stillborn.
In the United States, 2,000 babies a year need organ transplants; this number
includes 600 babies with HLHS, about 500 with liver failure, and another 500 with
kidney failure.
Since 1968, it has been technically possible to use anencephalics as organ
sources. A few days after Christiaan Barnard’s transplant, Adrian Kantrowitz trans-
planted a heart from an anencephalic baby to another infant, who died six hours
later.14 Kantrowitz had almost performed a transplant 18 months earlier but had to
wait for the anencephalic donor’s heart to stop beating, and then restart it, which
proved impossible.
In 1992, Laura Campo had her baby girl and named her Theresa Ann Campo
Pearson. Pictures of Theresa showed a beautiful baby wearing a pink knitted cap
that covered the top half of her head. Removing the cap revealed the brain stem
inside a partial skull.
Under Florida law, before Theresa’s organs could be donated, she had to be
brain-dead. Like most states, Florida used the Harvard standard. Unless Baby The-
resa was brain-dead, no one would remove her organs.
The parents asked Judge Estella Moriarty to rule Theresa brain-dead. But Judge
Moriarty correctly ruled against the couple, “[I am] unable to authorize someone to
take your baby’s life, however short—however unsatisfactory—to save another child.
Death is a fact, not an opinion.”15
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The couple appealed to Florida’s District Court of Appeals, which affirmed
Judge Moriarty’s decision. The baby then began to experience organ failure. At this
point, the neonatologists said, “We had to tell the parents [that] all they were doing
was prolonging the baby’s death.”16 They removed the respirator and Theresa died
the next day. By then, surgeons couldn’t use her organs.
The next day, the parents appeared on television to plead for a change in Flor-
ida’s laws regarding brain death. Upset and depressed, Campo probably shouldn’t
have been allowed on the show. A calm, eloquent surgeon joined them and dis-
cussed the need for donor organs.
Even though Baby Theresa died, the Florida Supreme Court decided not to
change the law and that anencephalic newborns should not be considered dead for
organ donation.17
1993: THE LAKEBERG CASE: SEPARATING
CONJOINED TWINS
Cases often occur where twins conjoined at birth are separated in long surgeries.
The media often cover these cases extensively and lionize the surgeon who separates
the twins. Although not generally known, the surgeon understands that he or she
will usually sacrifice the weaker twin to create a singleton.
For example, in separating conjoined twins Angela and Amy Lakeberg in 1993,
Amy Lakeberg died. Bioethicist and historian Alice Dreger writes, “Yet no matter
how justified the ends, it is troubling to see surgeons actively cause the death of a
child like Amy—who was obviously conscious and as entitled to the conjoined heart
as her sister.”18
In 2002, UCLA surgeons separated 1-year-old Guatemalan craniopagus (con-
joined at the head) twins in a 22-hour operation. The story received saturation cov-
erage nationwide. In 2006, future Republican presidential candidate Dr. Ben Carson
announced he would separate 10-year-old craniopagus twins from Delhi, India.
Dreger argues that separation surgery is a modern freak show, the kind of thing
that people once paid to see in exhibits.19 In the eighteenth century, physicians paid
such people to exhibit themselves. But as Dreger argues, at least back then such
people got paid and were allowed to exhibit their bodies with dignity. Today, the
only message they get is: “You’re abnormal. We can surgically normalize you, even
at risk of killing you. Be grateful.”20
Separating conjoined twins, especially adults, may often be a reach for fame by
the hospital and by the surgical team, saying, “Hey. We can do this and nobody
else can! We’re the top dogs!” More charitably, it may be just another version of
the rule of rescue: We can separate these two conjoined babies, give them separate
lives, and feel good about doing so.
In lionizing these cases and their surgeons, the media often describe twins under-
going separation as “brave little fighters,” the surgeons as “heroes,” and the hospital
as performing operations that are “medically necessary.” But is this really so?
Johns Hopkins’s Ben Carson became famous in 1987 for successfully separating
7-month-old German craniopagus twins (joined at the head and sharing part of the
same brain). Since then, he has written several best-selling books about his surgeries
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on conjoined twins and his life.21 In 1994, he and his team tried to separate 7-month-
old South African craniopagus twins, who both died during the operation. In 1997,
he traveled with a 50-member team to successfully separate two Zambian craniop-
agus twins who faced in opposite directions and did not share any organs.22
In 2004, Carson attempted to separate the German craniopagus twins Lee and
Tabea Block. His surgery was only partially successful, as Tabea died during the
surgery.23
ETHICAL ISSUES
Use of Animals as Resources for Humans
In the case of Baby Fae, animal activists criticized Leonard Bailey, “This is medical
sensationalism at the expense of Baby Fae, her family, and the baboon,” said People
for the Ethical Treatment of Animals (PETA).24 Activists protested outside Loma
Linda Hospital, claiming that Fae’s life was not worth more than that of Goobers.
Philosopher Tom Regan claimed the operation had “two victims,” Fae and
Goobers.
Regan argued that beings who “have a life” have a right to life. He held that
Goobers had a biographical life in that it mattered to her whether she would live
or have her heart cut out: “Like us, Goobers was somebody, a distinct individual.”
Regan argued that all primates have equal moral value, so Goobers did not exist as
Fae’s resource:
Those people who seized [Goobers’s] heart, even if they were motivated by their
concern for Baby Fae, grievously violated Goobers’s right to be treated with respect.
That she could do nothing to protest, and that many of us failed to recognize the
transplant for the injustice that it was, does not diminish the wrong, a wrong settled
before Baby Fae’s sad death.25
Regan argued that even if human beings had obtained benefits in the past from
using animals, it was wrong to use other primates this way as our resources.
Other animal rights philosophers emphasized that Baby Fae and Goobers, con-
sidering their youth and individual potential, differed more than Baby Fae and an
anencephalic baby.26 Anencephalic babies lack potential cognitive ability, whereas
Goobers had more cognition, agency, and consciousness than such a dying human
baby.
Some philosophers contemplated the large breeding facility from which Goo-
bers had been bought and offered the image of a similar facility supplying anen-
cephalic babies as sources of organs. If this image shocks, they asked, why do we
tolerate such a facility for nonhuman primates, especially when such primates
resemble us more than mentally challenged humans?
So why not use an anencephalic newborn as a donor? As we saw, this logic
prevailed in the later cases of Baby Gabriel and Baby Theresa.
Bailey retorted that “people in southern California have it so good that they can
afford to worry about this type of issue.”27 Moreover, he claimed, “When it gets
down to a human living or dying, there shouldn’t be a question” of using an animal
to save that human.
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The director of Loma Linda’s Center for Christian Bioethics agreed:
On an ethical scale, we will always place human beings ahead of subhumans, espe-
cially in a situation where people can be genuinely saved by animals. That is the
story of mankind from the very beginning. Animals, for example, have always been
used for food and clothing.28
Of animal-rights activists, Fae’s mother said, “They don’t know what they’re
talking about.”29
Alternative Treatments?
In the Baby Fae case, was alternative treatment possible? One alternative to a xeno-
graft for Fae was a human donor heart. Loma Linda claimed that the xenograft was
necessary, because Baby Fae was dying and no human heart was available. Bailey
argued that it would be impossible to find a heart because the donor would have
to be less than seven weeks old, and criteria for neonatal brain death were prob-
lematical (Bailey: “You can have a flat EEG on a newborn, and yet the baby will
survive”).30
Most neonatal transplants come from anencephalic babies, and Bailey main-
tained that most parents of such infants would refuse to accept the fact that their
baby was brain-dead and would not agree to donate the baby’s organs in time. He
described the baboon heart as Baby Fae’s “only chance to live.”
An associate surgeon at Loma Linda defended Bailey:
It would have to be the sort of case where an infant fell out of a crib and was
declared brain dead but the heart was okay. Then all these tests would have to be
done to insure a proper matching. With Baby Fae, we had five days to do those
tests, getting the best possible [animal] donor. With a human heart, we might not
have been able to keep the recipient alive.31
In his memoirs, surgeon Thomas Starzl describes Paul Terasaki as a “symbol of
integrity” in the transplant community.32 Terasaki, director of the Southern Califor-
nia Regional Organ Procurement Agency, said that an infant heart had been avail-
able on the day of Baby Fae’s xenograft. Terasaki added, “I think that they [the Loma
Linda team] did not make any effort to get a human infant heart because they were
set on doing a baboon.”33
Bailey agreed that he didn’t look for a human heart:
We were not searching for a human heart. We were out to enter the whole new
area of transplanting tissue-matched baboon hearts into newborns who are sup-
ported with antisuppressive drugs. I suppose that we could have used a human
heart that was outsized and that was not tissue-matched, and that would have
pacified some people, but it would have been very poor science. On the other hand,
I suppose my belief that there are no newborn hearts available for transplantation
was more opinion than data or science, but it is scientific to acknowledge that the
whole area of determining brain death of newborns is very problematical.34
Another alternative existed. Pediatric surgeon William Norwood had developed
surgery for HLHS that attempted to repair the left ventricle. He had performed his
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operation many times at Children’s Hospital in Philadelphia, with a success rate of
40 percent. Bailey claimed that children did not do well enough after the Norwood
procedure to justify this operation for Baby Fae. But given Bailey’s interest in xeno-
grafts, was he an impartial judge?
What about conjoined twins? What’s the alternative?
Some adult conjoined twins claim surgeons and parents are prejudiced against
life as conjoined adults, thinking that their quality of life is so low that likelihood
of death for one during surgery to free the other is preferable.35 Alice Dreger calls
these sacrifice surgeries and argues that they pose challenging ethical questions.
Surely they raise the most controversial assumption of all: that a chance of normalcy
for one twin is worth the death of the other.
Conjoined children can live and grow into late adulthood while conjoined. Eng
and Chang famously lived into their 70s; each married and fathered several normal
children. Despite being conjoined at the waist, they had good lives.
But don’t conjoined twins do better when separated to live independent lives?
This is like the problem with involuntary commitment of homeless people with
mental illness: From our point of view, they’d be better off in institutions, but
they themselves may not agree (see Chapter 14). Also, “Conjoined twins almost
invariably state that, from their point of view, they don’t need to be separated to
be individuals, because they do not feel trapped or confined by their
conjoinment.”36
Perhaps the most spectacular issue here is how little is known about long-term
survival for conjoined twins who were separated and about their subsequent quality
of life. As Dreger notes, the one extant study merely asked whether separated twins
were later alive or dead, with no other questions asked. How can surgeons get
informed consent without real data? The assumption always is: Anything is better
than living as a conjoined twin.
Perhaps the best outcomes occur where physicians discover conjoined twins in
utero and can separate them before birth or shortly thereafter. In one study of
20 twins (10 pairs) from 1978 to 2000, 14 survived and 4 graduated from college.
All twins had several additional surgeries to correct orthopedic, neurological, and
urologic problems.37
But is surgery better? What is the resulting quality of life for survivors? In ret-
rospect, what do the separated twins think of the operation? Would they do it for
their own children, if they were conjoined? How many mourn the loss of a twin
killed in the operation?
Babies as Subjects of Research
Critics objected to Bailey’s surgery not because of risk or experimentation but
because Bailey used a baby, who could not consent. In the decades since the earlier
attempts at xenografts, the only new developments had been the discovery of cyc-
losporin and better matching of tissue, but both could have been used in a consult-
ing adult.
In addition to questions about whether using Fae made sense medically, a more
general question is whether parents should volunteer children for experiments.
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Protestant theologian Paul Ramsey argued that it is always wrong for parents to
volunteer their children for nontherapeutic research.38
Catholic theologian Richard McCormick demurred, holding that parents can
volunteer children for “low-risk” nontherapeutic research.39 Based on the Roman
Catholic tradition of natural law, he argued that just as adults should volunteer for
low-risk, nontherapeutic research, infants should be volunteered for the same kind
of research.
Neither Ramsey nor McCormick used the utilitarian justification of the greatest
good for the greatest number. To many people, though, utilitarianism offers the
most natural justification. If no one volunteered for such research, progress would
halt, so for the general good, both adults and babies should participate. Because
HLHS is a congenital defect of babies, how can treatment for it advance unless
some HLHS babies participate?
Informed Consent
Many people wondered whether Dr. Bailey had carefully described the Norwood
procedure to Baby Fae’s mother. Was she also informed that a human donor was
available?
Fae’s mother had no medical insurance. Bailey offered her the xenograft for
free. Fae’s mother had no money for the Norwood procedure or for a human heart
transplant. Costs for such a transplant can be $250,000, with immunosuppressive
drugs costing $20,000 a year for life.
Law professor Alexander Capron summed up this criticism:
Doubts linger, not only about the adequacy of the information supplied to Baby
Fae’s parents but about whether their personal difficulties made it possible for them
to choose freely, and whether the realization that their child was dying may have
left them with the erroneous conclusion that consenting to the transplant was the
only “right” thing to do.40
In most respects, the mother’s poverty and lack of insurance rendered her
consent meaningless. Faced with the death of her baby and no other realistic
options, what else could she choose?
And was the mother informed about the probable outcome of the xenograft?
Did Baby Fae’s mother understand that Bailey’s xenograft was a shot in the dark,
unlikely to work, and a procedure that might merely extend her baby’s dying?
Historically, lack of informed consent was always a problem with xenografts.
Boston University law professor George Annas emphasized that in previous attempts
to implant animal hearts in humans, patients were poor, vulnerable, and rarely
consented.
In 1963, Keith Reemtsma at Columbia University implanted chimpanzee kidneys
in a 43-year-old African-American man who was dying of glomerulonephritis. In 1964,
James Hardy at the University of Mississippi implanted a chimpanzee heart into a
poor deaf-mute man who was dying, was carried to the hospital unconscious, never
consented to the operation, and survived for only two hours. These operations were
experimental, not therapeutic, and were characterized by exploitation and lack of
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consent. Annas saw Baby Fae’s case as a continuation of such practices. Calling Bailey
the champion of the “anything goes” school of experimentation, he concluded:
This inadequately reviewed, inappropriately consented to, premature experiment on
an impoverished, terminally ill newborn was unjustified. It differs from the xenograft
experiments of the early 1960s only in the fact that there was prior review of the
proposal by an IRB. But this distinction did not protect Baby Fae. She remained unpro-
tected from ruthless experimentation in which her only role was that of victim.41
What about conjoined twins? In 2003, Ben Carson joined the team of surgeons
separating the adult Iranian women, Ladan and Laleh Bijani, who both died during
the operation. Before the operation and in consenting, did they really understand
the high probability that they might both die?
Alice Dreger criticizes what Carson said he told the twins in obtaining consent
that a 50 percent chance existed that one of them would die or be disabled from
the surgery:
But as a leading expert in the field, Carson surely knew of the most comprehensive
study of craniopagus separations, which had concluded that “mortality and morbid-
ity after surgical separation of craniopagus twins is horrendous: of the 60 infants
operated on, 30 died, 17 were impaired, 6 were alive but ultimate status unknown,
and only 7 were apparently normal.”42
As Dreger points out about the Iranian women, at their advanced age, experts
agreed that their skulls had thickened and hardened, their brains had matured and
were less resilient, thus making their chances of success even worse than the dismal
statistics given earlier.43 Dreger wonders whether these women were given true
information about the dismal prospects of the surgery.
The issue here resembles getting informed consent from live organ donors
during the decades when no one did medical follow-up on such donors. Without
evidence of long-term harm (or lack thereof), how can there be informed consent?
Similarly, without long-term follow-up of the results of separating conjoined twins
at birth, how do we know that life as a conjoined twin isn’t better? Especially when
society might be prejudiced against such a life?
The Media
In 1984, the media sensationalized the Baby Fae case. True, Loma Linda tried to
protect the family’s privacy and confidentiality, but both the hospital and Bailey
withheld more than identifying details. Their account of events leading up to the
surgery was confusing, hospital spokespersons gave occasional misstatements of fact,
and Loma Linda refused to release a copy of the consent form that Fae’s parents
had signed. Journalists complained about secrecy and the public’s right to know.
This situation formed an interesting contrast to the case two years earlier of
Barney Clark’s artificial heart. Just as many reporters came to Loma Linda as to
Utah, but they got much less information. William DeVries had held daily press
briefings; Bailey held fewer. Reporters accused Loma Linda of ineptitude and said
that aspects of the case begged for clarification.
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While journalists accused Bailey and Loma Linda of reticence, they also accused
them of publicity seeking, self-promotion, grandstanding, and adventurism.44 In
contrast, Keith Reemtsma at Columbia University gave no news conferences until
his patient had been discharged from the hospital and until he had prepared and
submitted a scientific paper. Reemtsma argued:
Science and news are, in a sense, asymmetrical and sometimes antagonistic. News
emphasizes uniqueness, the immediacy, the human interest, in a case such as [Baby
Fae’s]. Science emphasizes verification, controls, comparisons, and patterns.45
Law professor Alex Capron argued similarly:
There was a time when the public learned of biomedical developments after they
had been reviewed by, and generally reported to, the researchers’ scientific and
medical peers [a procedure that protected everyone’s dignity and meant that the
public would learn only of genuine advances] rather than merely being titillated by
bizarre cases of as yet unproven import.46
Separation of conjoined twins also raises issues about use of babies in risky
surgery and about surgeons seeking fame. On any given day in any major children’s
hospital, surgeons operate on two desperately ill infants and no one notices. Spec-
tacular surgery occurs, teams spend weeks nurturing each child back to health, but
the public is indifferent.
Now make one change and have the two infants enter the hospital as conjoined
twins, connected at the head, sternum, or pelvis, and everyone takes notice. Why
is that?
Can we imagine a surgeon saying to two 20-year-old conjoined twins, “If you
are reasonably happy with your life together, go home and enjoy life. Don’t worry
about what others think or about people staring. That is their problem, not yours.
You are wonderful as you are.”
Therapy or Research?
Was Fae’s xenograft therapy or research? Was alternative treatment available? Did
the xenograft have a chance to help Fae, or was she just one sacrifice among thou-
sands on the altar of medical research?
A therapeutic procedure offers a patient a reasonable chance of benefit; a pro-
cedure which offers uncertain or unknown chance is research and experimental. This
medical distinction can be expressed in Kantian ethics as the difference between
treating people as “ends in themselves” and using them as “mere means.” Essayist
and psychiatrist Charles Krauthammer wrote:
Civilization hangs on the Kantian principle that human beings are to be treated as
ends and not means. So much depends on that principle because there is no crime
that cannot be, that has not been, committed in the name of the future against
those who inhabit the present. Medical experimentation, which invokes the claims
of the future, necessarily turns people into means.47
Was Bailey’s best scenario possible? Was there a probability that Fae could have
lived to 20 with a baboon heart? At one point, Bailey phrased his claim differently,
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276 Chapter 12 Using One Baby for Another
saying that Fae had a chance to “celebrate more than one birthday with her new
heart.”48 Was this modest scenario possible?
Bailey claimed his operation had therapeutic intent:
I have always believed it would work, or I would not have attempted it. … There
was always therapeutic intent. My dilemma has been educating the university and
the medical profession.49
He made these comments nine days after the operation, when Baby Fae was
still alive and seemed to be doing well. He also said that xenografts might soon be
preferable to human transplants.
Immunologist Nehlsen-Cannarella argued that, if a perfect match had been
found with the best-matched lymphocytes, the operation could have been therapeu-
tic. With such a perfect match, Fae could have accepted the heart.
Other surgeons castigated Bailey, rejecting the idea of therapeutic intent and
saying that Bailey needed therapeutic probability. Almost any experimental surgery
has a remote chance of being therapeutic, but that’s not enough.
These surgeons also rejected Bailey’s and Nehlsen-Cannarella’s claim about tis-
sue typing. In 1970, Paul Terasaki had discovered that while tissue typing can
improve transplants within families, it couldn’t outside of families. Surgeons resisted
Terasaki’s findings but accepted the limitations his results suggested. Thomas Starzl
wrote in 1992:
Twenty years later the only controversy is whether matching under all circumstances
means enough to be given any consideration in the distribution of cadaver kidneys.
By exposing the truth, Terasaki had made it clear that the field of clinical transplan-
tation could advance significantly only by the development of better drugs and
other treatment strategies, not by vainly hoping that the solution would be through
tissue matching.50
Most transplant surgeons agreed. The American expert on pediatric transplants,
John Najarian at the University of Minnesota, said of the Baby Fae case, “There has
never been a successful cross-species transplant. To try it now is merely to prolong
the dying process.”51 He also said that Fae’s death on November 15 was “reasonably
close to what could be expected,” because three weeks was about how long it usually
takes for rejection to do its damage.
In a review of this case, the editor of Journal of Heart Transplantation concluded:
From the experimental data and past clinical attempts, there is nothing to indicate
that a human infant will tolerate a primate heart for months or years using today’s
means to induce and control tolerance. The Loma Linda surgical team has not
informed the medical community, as yet, of any new evidence that might suggest
the contrary.52
The case against Baby Fae’s transplant as “therapy” may be summed up as
follows:
First, it had been known since 1970 that better antigen matches between donor
and recipient would not improve transplants.
Second, even the best matches required long-term maintenance on cyclospo-
rine, which selectively prevents the immune system from rejecting transplanted
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Chapter 12 Using One Baby for Another 277
organs. Bailey claimed that infants could be given larger dosages of cyclosporine
than adults, but cyclosporine eventually produces toxic side effects.53 The autopsy
on Baby Fae indicated that her kidneys were probably poisoned by the massive
dosages of cyclosporine she received.
Third, Bailey argued that since an infant’s immune system is not fully devel-
oped, babies might initially tolerate xenografts. But this is not certain; and even if
it were true, an initial success would be followed by failure as the baby’s immune
system developed and rejected the xenograft.
Fourth, only one heart xenograft had been tried previously, and this had a
disastrous result.
Fifth, Loma Linda was a small medical institution. In their zeal to perform a
xenograft and be famous, the staff was blind to their own limitations.
Sixth, Bailey himself was an amateur: He had never performed a human heart
transplant, and he had never published about xenografts.
Taking all these into account, Baby Fae had no chance of surviving for one year,
let alone reaching her 20th birthday. Thus, the surgery was not therapeutic but
experimental. Nature concluded that “the serious difficulty over [Bailey’s] operation
… is that it may have catered to the researchers’ needs first and to the patient’s
only second.”54 Krauthammer said that Baby Fae had lived and died in the realm
of experimentation:
Only the bravery was missing: no one would admit the violation. Bravery was
instead fatuously ascribed to Baby Fae, a creature as incapable of bravery as she
was of circulating her own blood. Whether this case was an advance in medical
science awaits the examination of the record by the scientific community. That it
was an adventure in medical ethics is already clear.55
In a review of the case, the American Medical Association and top medical
journals criticized Bailey, concluding that xenografts should be undertaken only as
part of a systematic research program with controls in randomized clinical
trials.56
Ethics and Terminology: Infants as “Donors”
The cases of babies Fae, Theresa, and Gabriel, as well as most separations of neo-
natal conjoined twins, raise ethical questions about using one infant as a resource
for another. One argument against using infants as organ donors is their vulnera-
bility. In general, the more vulnerable people are, the less defensible it is to do
something to them without their consent, and babies are some of the most vulner-
able humans.
In this regard, a question of terminology arises. When an infant’s organ is used
as a transplant, who is giving what as a “gift”? Terms like “donation” and “the gift
of life” seem to be inappropriate in this situation; since no baby ever consents to
donate his or her organs, a baby cannot really be described as providing a gift.
More accurate terms are “organ transfer,” “organ recovery,” “organ reassign-
ment,” and so on. Such terms seem cold, and this connotation suggests why people
resist using infants’ organs as sources for other infants and why organ procurement
agents prefer phrases such as “gift of life.”
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Anencephalics and Brain Death
One vital question in the debate over anencephalics as donors has to do with brain
death. Shewmon argued that there are no good criteria for brain death in infants,
and whether or not this is true, brain death in anencephalic infants is unclear.
Anencephaly is a medical term describing a range of gross congenital brain
deficits, all of which entail no chance of normal brain function but some of which
do not entail immediate brain death.57 The fact that most babies do not die the first
week—and thus could not be donors under the Ontario guidelines—illustrates this
problem, because some kinds of anencephaly are similar to a persistent vegetative
state (PVS); therefore, with maximal supportive care, some anencephalic infants
could survive indefinitely. One critic said, “I have an uneasy feeling that what lurks
behind the anencephalic issue is the vegetative state issue.”58
Some commentators have suggested creating a new category of legal brain
death, or an exemption from the usual legal criteria of brain death, to allow for
transfers of organs from anencephalic babies. Such a new category or exemption is
needed for organ donation because anencephalic infants are neither dead nor about
to die quickly enough, and allowing them to die naturally could destroy their organs.
So the question boils down to this: Should we change our criteria of brain death
for infants to get more organs from other dying infants? Disability advocates agreed,
“Treating anencephalics as dead equates them with ‘nonpersons,’ presenting a ‘slip-
pery slope’ problem with regard to all other persons who lack cognition for what-
ever reason.”59
Two physicians considered a proposal to adopt a system used in Germany,
where anencephalics are considered “brain-absent” and therefore brain-dead. They
rejected this proposal for America:
Not only are the brains of such infants not completely absent, but there is also a
remarkable heterogeneity of morphologic and functional features in the infants con-
sidered anencephalic. … The causes of the neural-tube defects, including anenceph-
aly, are complex and multiple—a fact that confounds the issue and supports the
concept that the condition is quite variable. It is worrisome, but not surprising, that
the diagnosis of anencephaly is occasionally made in error. Indeed, too many errors
have been made for the diagnosis to be considered reliable as a legal definition of
death. We conclude that anencephalic infants are not brain-absent and that the
condition is sufficiently variable that the establishment of a special category is not
justified.60
Another problem is that diagnosis of anencephaly, even as a range, is often
problematic. Diagnosing brain size or brain function at birth is controversial (see
Baby Jane Doe case). Will overzealous physicians and parents, wanting to bring
some good out of a tragedy, declare babies anencephalic when they have some lesser
defect—say, microcephaly? These media sometimes report cases of developmentally
delayed children allegedly diagnosed as anencephalic but who now function well.
What about all the children born with microcephaly due to the Zika virus? Will
society want to use these babies as organ sources?
A slippery slope might occur here: If borderline anencephalics can become a
source of organs, there might be a tendency to use infants with closely related
disorders such as atelencephaly (incomplete development of the brain) and
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Chapter 12 Using One Baby for Another 279
lissencephaly (unusually small brain parts). It has been argued that “the slippery
slope is real, because some physicians have proposed transplants from infants with
defects less severe than anencephaly.”61
Judge Moriarty wrote in her medical review for her decision, “There has been
a tendency by some parties and amici to confuse lethal anencephaly with these less
serious conditions, even to the point of describing children as ‘anencephalic’ who
have abnormal but otherwise intact skulls and who are several years of age.”62
Some critics have asked whether less was being done for anencephalic babies
when these babies were seen as potential organ donors. Alex Capron described the
situation as, “By far the most fundamental problem … was trying to sustain an
anencephalic’s liver, heart, and kidneys without temporarily giving life to its brain
stem, the one organ that needed to die for transplant to begin.”63
According to the Ontario Protocol, a potential anencephalic donor is to be
maintained on a respirator but periodically removed from the respirator to see if
independent breathing will occur. Is this removal in the best interest of the infant?
Is the anencephalic infant really being seen as a patient? Or as an organ source?
(The Pittsburgh Protocol raises the same questions.)
A counterargument here is that with anencephaly, birth is not morally relevant.
That is, most fetuses diagnosed as anencephalic are aborted (indeed, anencephaly
is one of the best reasons for aborting a fetus during the second term), and the
birth of an anencephalic does not make a moral difference. If abortion is appropri-
ate in anencephaly, why should it be considered immoral to do less to prolong the
life of an anencephalic who is a potential organ donor? It might be argued, along
these lines, that since anencephalics almost always die a few days after birth, why
not allow physicians to kill them painlessly and transplant their organs at the opti-
mal time?
Another question concerns keeping an anencephalic fetus alive to be a later
source of organs, a neonatal version of the non-heart-beating donor protocol. There
seems to be a real distinction between keeping a fetus alive for this purpose and
simply using the organs of a baby who has accidentally become brain-dead or who
has unexpectedly been born anencephalic. Some critics say we shouldn’t cross
this line.
So how many anencephalic organ sources are we talking about? Most anen-
cephalics are identified in utero, and most are aborted. Between 1999 and 2004,
about 2,116 anencephalic babies were born, or about 423 a year.64 If 423 anenceph-
alics are born alive and survive immediately after birth, about half will be possible
donors of hearts, kidneys, and livers; the others will be unacceptable for various
reasons, including organ malformation, low birth weight, and lack of consent by
family. The number of possible donors would be further reduced after blood and
tissue matching. Taking all these into account, one study estimated that only about
30 recipients a year would benefit from using anencephalics as sources of organs.65
Given that serious problems exist using anencephalics as organ sources, is even
50 babies a year a large enough number to benefit? Would it justify changing our
criteria of brain death? Would it justify a departure from the so-called dead donor
rule—that patients must be dead, must be cadavers, before organs are harvested?
Most ethicists and doctors decided negatively: The numbers were too small for so
big a change.
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280 Chapter 12 Using One Baby for Another
Saving Other Children
Something has been missing in the discussion so far. As mentioned, thousands of
children die each year waiting for an organ. All anencephalic babies are born dying,
and even near-anencephalic babies will never have lives with any cognitive awareness.
Both the parents of Baby Theresa and her doctors tried to create some good out of
these tragic births. Baby Holc stands as an example of a child saved who otherwise
would have been lost to overzealous concern for ethics. What is wrong with that?
And, yes, dangers exist of misdiagnosis and “inclusion creep,” where more and
more near-anencephalic babies are used as sources. But even 50 anencephalic babies
a year could save another 50 babies.
Meanwhile, the opportunity cost of doing nothing is staggering. Each day,
babies who could be saved will die. Can ethical concern sometimes be a bad thing,
if it blocks us from saving lives?
Another argument in favor of using infants’ organs for transplants would be
analogous to McCormick’s argument: Parents should choose for a child as the child
ought to choose in adulthood. Such organs should be used for transplant if that
resulted in the greatest good for the greatest number and if otherwise the organ
would be wasted.
Even if, on average, 400 anencephalic babies are born each year, and even if
only half of them have usable organs, why not save 200 other dying babies with
transplanted hearts, livers, kidneys, and corneas?
Costs and Opportunity Costs
In the Baby Fae case, many critics questioned whether expensive resources should
be spent on a single case when the same money could have done more good for
many others. Although Loma Linda never revealed the cost of Fae’s surgery and
the associated treatment, it probably cost at least $500,000. Would it make sense
to perform 1,000 such operations a year, at cost of maybe $1 billion, while thousands
of babies are born deformed because their mothers could not afford prenatal tests
like amniocentesis and sonograms?
In the case of Baby Gabriel and Baby Holc, the surgery alone cost $140,000; in addi-
tion, there were costs of flying everyone to Loma Linda and, for the Schoutens and the
Ontario hospital, the cost of keeping Baby Gabriel alive for a week. Consider that thou-
sands of pregnant women in the United States get no prenatal care and that as a result,
many babies are born with preventable defects. Isn’t the system biased in favor of dra-
matic surgical cases and against these anonymous women and their children?
With conjoined twins, what about costs of separating conjoined twins in 14-hour
operations with dozens of surgeons? Millions of dollars can easily be spent on one
case. Why is so much free care given on these dramatic cases, while other babies
are ignored?
Conclusion
There is an old saying, “Beware the surgeon with one case.” That summarizes the
ethics of the cases in this chapter. As Alice Dreger states, “Unlike drugs and many
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Chapter 12 Using One Baby for Another 281
nonsurgical medical procedures, surgeries, at least in the United States, are largely
exempt from systematic review.”66
When experimental surgery is done, it should be in a well-conceived research
design. One surgeon grandstanding for fame should not be allowed. Should Loma
Linda be proud of Leonard Bailey and what happened there? Should Hopkins boast
of separating conjoined twins? What’s the opportunity cost of all these surgeries?
FURTHER READING
George Annas, “Baby Fae: The ‘Anything Goes’ School of Human Experimentation,” Hastings
Center Report, vol. 15, no. 1, February 1985, pp. 15–17.
Denise Breo, “Interview with ‘Baby Fae’s’ Surgeon,” American Medical News, November 16, 1984.
Alice Dreger, One of Us: Conjoined Twins and the Future of the Normal, Cambridge, MA:
Harvard University Press, 2004.
Charles Krauthammer, “The Using of Baby Fae,” Time, December 3, 1984.
Thomasine Kushner and Raymond Belotti, “Baby Fae: A Beastly Business,” Journal of Medical
Ethics, vol. 11, 1985.
“Baby Fae: Ethical Issues Surround Cross-Species Organ Transplantation,” Scope Note 5,
Kennedy Institute of Ethics, Washington, D.C., Georgetown University.
DISCUSSION QUESTIONS
1. Was Baby Fae used as a guinea pig to advance a medical experiment? Did she
have a chance to live to age 21?
2. Was it right to treat Goobers as a thing when a human donor heart was available?
3. Should anencephalic babies born dying be allowed to be used as heart donors
for babies who might live?
4. How can separating conjoined twins be seen as good for the parents and the
surgeons but not good for the twins themselves?
NOTES
1. Renée Fox and Judith Swazey, The Courage to Fail: A Social View of Organ Transplants and Dialysis,
2nd ed. rev., University of Chicago Press, Chicago, 1974, 1978; Harmon Smith, “Heart Transplan-
tation,” Encyclopedia of Bioethics, Free Press, New York, 1978.
2. Richard Howard and J. Najarian, “Organ Transplantation—Medical Perspective,” Encyclopedia of
Bioethics 3, Free Press, New York, 1978, pp. 1160–1165.
3. Animals Voice 2, no. 3 (December 1984).
4. Charles Krauthammer, “The Using of Baby Fae,” Time, December 3, 1984, p. 14.
5. Quoting Kenneth P. Stoller, M.D., “The Baby Fae: The Unlearned Lesson of Evolution,” Perspectives
on Medical Research 2 (1990), http://conradaskland.com/blog/baby-fae-the-unlearned-lesson-of-evo-
lution/
6. “Baby Fae Stuns the World,” Time, November 12, 1984, p. 72.
7. Debra Berger, “The Infant with Anencephaly: Moral and Legal Dilemmas,” Issues in Law and Med-
icine 5 (1989), p. 68.
8. Medical Task Force on Anencephaly, “The Infant with Anencephaly,” New England Journal of Med-
icine 332, no. 10 (March 8, 1990), p. 669.
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http://conradaskland.com/blog/baby-fae-the-unlearned-lesson-of-evo-lution/
http://conradaskland.com/blog/baby-fae-the-unlearned-lesson-of-evo-lution/
282 Chapter 12 Using One Baby for Another
9. Robert D. Trough and John D. Fletcher, “Can Organs Be Transplanted before Brain Death?” New
England Journal of Medicine 321, no. 6 (1989), p. 388.
10. Associated Press, “Hospital Sets Policy on Organ Donor Use,” February 23, 1988.
11. Joan Heilman, “Tiny Gabriel’s Gift of Life,” Redbook, December 1988, p. 162. (Article given to author
by Lynn Bondurant)
12. “Gift of Life Surrounded by Controversy,” Windsor Star (Canada), April 3, 2011.
13. J. Peabody et al., “Experience with Anencephalic Infants as Prospective Organ Donors,” New
England Journal of Medicine 321, no. 6 (August 10, 1989), pp. 344–350.
14. A. Kantrowitz et al., “Transplantation of the Heart in an Infant and an Adult,” American Journal of
Cardiology 22, no. 782 (1968), pp. 782–790.
15. Associated Press, “Ethicists Debate Death and Baby’s Lacking Brain,” Birmingham News, March 31,
1992, p. A1.
16. Brian Udell, quoted in USA Today, March 30, 1992, p. 3A.
17. In Re T. A. C. P., Southern (Law) Reporter, 2nd Series, Supreme Court of Florida, November 12, 1992,
pp. 588–595.
18. Alice Dreger, One of Us: Conjoined Twins and the Future of Normal, Harvard University Press, Cam-
bridge, MA, 2004, p. 93.
19. Ibid., p. 125, 127.
20. Alice Dreger, “Jarring Bodies: Thoughts on the Display of Unusual Anatomies,” Perspectives in
Biology and Medicine 43, no. 2 (Winter 2000), pp. 161–172.
21. Ben Carson, Gifted Hands: The Ben Carson Story, Zondervan Press, Grand Rapids, MI, 1990.
22. Press Release, “Conjoined Twin Fact Sheet,” Johns Hopkins Children’s Center, www.hopkinschil-
drens.org/pages/news/twins_factsheet.html.
23. Press Release, “Hopkins Team Separates Conjoined Twins,” Johns Hopkins International, Septem-
ber 16, 2004.
24. “Baby Fae Stuns the World,” p. 70.
25. Tom Regan, “The Other Victim,” Hastings Center Report 15, no. 1 (February 1985), pp. 9–10.
26. Thomasine Kushner and Raymond Belotti, “Baby Fae: A Beastly Business,” Journal of Medical Ethics
11 (1985), pp. 178–183.
27. Denise Breo, “Interview with ‘Baby Fae’s’ Surgeon,” American Medical News, November 16, 1984, p. 18.
28. “Interview with Dr. Jack Provonsha,” U.S. News and World Report, November 12, 1984, p. 59.
29. Dan Chu and Eleanor Hoover, “Helped by a Baboon Heart, An Imperiled Infant, ‘Baby Fae,’ Beat
the Medical Odds,” People, November 18, 1984.
30. Breo, “Interview with ‘Baby Fae’s’ Surgeon,” p. 18.
31. Chu and Hoover, “Helped by a Baboon Heart,” p. 74.
32. Ibid.
33. Thomas Starzl, The Puzzle People: Memoirs of a Transplant Surgeon, University of Pittsburgh Press,
Pittsburgh, PA, 1992, p. 123.
34. Breo, “Interview with ‘Baby Fae’s’ Surgeon,” p. 18.
35. David Wasserman, “Killing Mary to Save Jodie: Conjoined Twins and Individual Rights,” Philosophy
and Public Affairs Quarterly 21, no. 1 (Winter 2001), pp. 9–14.
36. Dreger, One of Us, p. 63.
37. T. P. Votteler and K. Lipsky, “Long-Term Results of 10 Conjoined Twin Separations,” Journal of
Pediatric Surgery 40 (April 2005), pp. 618–629.
38. Paul Ramsey, “The Enforcement of Morals: Nontherapeutic Research on Children,” Hastings Center
Report 6 (August 1976), pp. 21–30.
39. Richard McCormick, “Proxy Consent in the Experimentation Situation,” Perspectives in Biology and
Medicine 18, no. 1 (Autumn 1974), pp. 2–20.
40. Alexander Capron, “When Well-Meaning Science Goes Too Far,” Hastings Center Report 15, no. 1
(February 1985), pp. 8–9.
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www.hopkinschil-drens.org/pages/news/twins_factsheet.html
www.hopkinschil-drens.org/pages/news/twins_factsheet.html
Chapter 12 Using One Baby for Another 283
41. George Annas, “The Anything Goes School of Human Experimentation,” Hastings Center Report 15,
no. 1 (February 1985), pp. 15–17.
42. Dreger, One of Us, p. 66, quoting Rowena Spencer, Conjoined Twins: Developmental Malformations
and Clinical Implications, Johns Hopkins University Press, Baltimore, MD, 2003, pp. 310–311.
43. Dreger, One of Us, p. 67.
44. “Celebrity surgery” was a term coined in a New Republic editorial, December 17, 1984.
45. Keith Reemtsma, Hastings Center Report, February 1985, p. 10.
46. Capron, “When Well-Meaning Science Goes Too Far,” p. 8.
47. Charles Krauthammer, “The Using of Baby Fae,” Time, December 3, 1984, pp. 87–88.
48. Breo, “Interview with ‘Baby Fae’s’ Surgeon,” p. 18.
49. Ibid., p. 13.
50. Starzl, The Puzzle People, p. 123.
51. “Baby Fae Stuns the World,” p. 70.
52. Jacques Loman, Journal of Heart Transplantation 4, no. 1 (November 1984), pp. 10–11.
53. Annas, “The Anything Goes School,” pp. 15–17.
54. Nature 88, no. 312 (November 8, 1984), p. 5990.
55. Krauthammer, “The Using of Baby Fae.”
56. “Judicial Council Offers New Guidelines,” American Medical News 27 (December 14, 1984), p. 46.
57. A. Shewmon, “Anencephaly: Selected Medical Aspects,” Hastings Center Report 18, no. 5 (1988),
pp. 9–11.
58. Laurie Abraham, “The Use of Anencephalic Infants as Organ Sources,” American Medical News 261,
no. 12 (March 24–31, 1989), pp. 1773–1781.
59. Debra H. Berger, Issues in Law and Medicine 67 (1989), pp. 84–85; quoted by Estella Moriarty in In
Re T. A. C. P., p. 595.
60. D. Medearis and L. Holmes, “On the Use of Anencephalic Infants as Organ Donors,” New England
Journal of Medicine 321, no. 6 (August 10, 1989), p. 392.
61. Beth Brandon, “Anencephalic Infants as Organ Donors: A Question of Life and Death,” Case
Western Law Review 40 (1989–199), p. 781; quoted by Estella Moriarty in In Re T. A. C. P.
62. In Re T. A. C. P., p. 590.
63. A. Capron, “Anencephalic Donors: Separate the Dead from the Dying,” Hastings Center Report 17,
no. 1 (February 1987), pp. 5–8; John Arras, “Anencephalic Newborns as Organ Donors: A Critique,”
Journal of the American Medical Association 259, no. 15 (April 15, 1986), pp. 2284–2285.
64. S. L. Boulet,“Trends in the Postfortification Prevalence of Spina Bifida and Anencephaly in the
United States,” National Center for Birth Defects and Developmental Disabilities, CDC, Atlanta,
July 7, 2008, pp. 527–532.
65. A. Shewmon, “Anencephaly: Selected Medical Aspects,” pp. 9–11.
66. Dreger, One of Us, p. 65.
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This chapter begins with the case of “John/Joan” or David Reimer, who was born
a boy and raised as a girl. Citing this case and others, advocates for intersex people
during the past 30 years argued that surgeons and psychologists mistakenly assigned
gender to children so often that such children would be better off unchanged. But
the traditional view argues that a child, for happy adjustment in school and in a
family, must leave the hospital as a boy or a girl.
This chapter generally explores cases of, and ethical issues surrounding, physi-
cians who assign a gender to babies at birth and of intersex teenagers and of trans-
sexual people, who often seek gender reassignment from endocrinologists and
surgeons. In 2015, former Olympic athlete Bruce Jenner, once known as “the world’s
greatest athlete,” underwent sex-change surgery and became Caitlyn Jenner, rock-
eting discussion of transgender people to the forefront of American culture. By
2016, Jenner was undoubtedly the most famous openly transgender woman on the
planet.
DAVID REIMER
When Ron and Janet Reimer had twin boys in 1966 in Winnipeg, Canada, the
Mennonite-raised couple felt joy. Eight months later, Bruce and Brian developed
problems urinating from phimosis (a minor problem where the foreskin cannot be
fully retracted from the head of the penis) and their pediatrician recommended
circumcision. Bruce went first and his physician botched the operation, leaving him
without a penis.
Devastated by this malpractice, Ron and Janet forwent surgery on the other
twin, Brian, and took Bruce home, saddened that he would never be able to repro-
duce or have sex. Ten months later on television in 1967, they saw psychologist John
Money of Johns Hopkins Hospital in Baltimore, Maryland, discussing the success
of gender-assignment surgery.
C H A P T E R 1 3
Ethical Issues in the Treatment
of Intersex and Transgender
Persons
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Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 285
Money, a brilliant, iconoclastic psychologist, pioneered the field of sexology. At
the time, behaviorism ruled in psychology, and Money strongly believed that the
early experiences of the child constructed its later gender identity.
On television, Money described how Hopkins had just performed two male-to-
female sex-change surgeries and had opened a clinic for further operations. Based
on his [alleged] studies of 151 pairs of hermaphrodites who had been raised male
or female, Money concluded that “the psychological sex in these circumstances does
not always agree with the genetic sex, nor with whether the sex glands are male
or female.”1 Money claimed that whether an adult lived as a female or male depended
on how each was raised, not on their biological sex.
Money taught at Johns Hopkins Medical School for 55 years and cofounded its
famous clinic for sex reassignment surgery. He created important concepts, such as
the distinction between gender identity and biological sex. Gender identity refers to
how one sees oneself and how one behaves as male, female, or in-between. Gender
role refers to how one acts in public or how the public expects one to act, as a male,
female, or in-between. Both differ from the idea of a biological sex, which is deter-
mined by one’s chromosomes.
Money believed that intersex children were experiments in nature for under-
standing whether biology or upbringing determined an adult’s gender role and
sexual attraction. For centuries, this nature–nurture debate has been ongoing in the
field of human development.
Sigmund Freud famously quipped that for women, “Biology is destiny,” but
Money believed Freud was wrong and that what really mattered was conditioning,
early rehearsal, and socialization. Contacted by the Reimers, Money welcomed the
chance to see their son and promised his help. In this embrace, Money had another
motive. New evidence had appeared that exposure of the fetus to hormones during
gestation organized sexual differentiation. If this were true, then people born male
could not escape their sexual orientation. What Money needed was a human who
was born male, made into a female, and then happily lived as an adult female.
Ideally, there would be a control, for otherwise too many factors might influence
the outcomes. So for Money, the Reimers’s call was a godsend, as Bruce Reimer
had an identical twin brother, Brian, who was being raised as a boy.
Money convinced the Reimers to raise Bruce as a girl, calling him “Brenda,”
and they agreed to surgical removal of his testes. They also agreed to later create
through surgery a vagina for Brenda.
But first, according to Money, it was important to create a gender identity for
Brenda. Money believed that a gender identity gate was open only between two and three
years of age, after which it closed, locking the child into a male or female gender.
At home in Canada, Brenda resisted being a girl and wanted to do the same
things as Brian, such as climb trees, play with soldiers, and urinate standing up.
She disliked wearing dresses, sitting with girls, playing with dolls, and going to Girl
Scout meetings. The parents hid Brenda’s true identity from neighbors, teachers,
and relatives, who thought of Brenda as only a disruptive tomboy and who didn’t
suspect that Bruce was being forced into a new gender identity as Brenda.
Money stipulated that he had to see the twins twice a year in therapy sessions
at Hopkins, which the parents were barred from attending. He believed it important
for Brenda to self-identify as a female, and he tried to push her into femininity.
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In 1972, quite ahead of any true results, Money caused a sensation at a meeting
of the American Association for the Advancement of Science (AAAS) by making
stupendous claims about his research. Unfortunately, his claims were fraudulent.
Whether Money knew or admitted that he committed fraud is unclear. He
appears to have been a true believer and was totally committed to his view about
the primacy of nurture and role rehearsal in childhood in forming later gender
identity. Those who knew him suggest that some of his intensity about this issue
stemmed from his own troubled early childhood in a repressive Christian sect in
Australia.
Money lied about Brenda being happy as a girl and falsely claimed that her
successful gender reassignment validated his theory. He also claimed that anyone
could be raised male or female and be happy as a gender reassigned adult. Unfor-
tunately, subsequent investigation showed that he committed many self-serving
errors in his studies, including his study of 151 pairs of hermaphrodites.
Feminists and psychologists loved his results, for they destroyed sex-role stereo-
types and raised the importance of psychology in the eyes of the world. Unfortunately,
like other frauds later, this deceit had major consequences on how others acted:
“Money’s case was decisive in the universal acceptance not only of the theory that
human beings are psychosexually malleable at birth, but also of sex reassignment
surgery as treatment of infants with ambiguous or injured genitalia.”2 Money’s work
also helped establish Johns Hopkins as a worldwide center of gender reassignment.
Back home, Brenda increasingly resisted being treated as a female and refused
to consent to upcoming vaginal surgery. When the twins saw Money, the psychol-
ogist made them strip and—in what now would be regarded as child abuse—made
Brian mimic sexual copulation with Brenda as s/he was made to lie on her back
with her legs spread. Nude Brian was forced to mount nude Brenda from behind.
Understandably, years later, both twins felt traumatized by these sessions. Of course,
Money justified these sessions by his claim that later sexual orientation stemmed
from childhood sex play and behavior rehearsal.
The twins then resisted visiting Money, who always saw them in private in a
building apart from the regular hospitals of Johns Hopkins. Impressed by Money’s
credentials, his appointment at Hopkins, and the august reputation of that institu-
tion, the parents naïvely trusted Money in private with their children. The twins
mistakenly thought that their parents knew and had consented to what Money was
doing with them.
To see if a change in school or neighbors would help, the parents moved to
another city, but that move proved disastrous. As Brenda approached her 11th
birthday, she fought off surgery. Things worsened for the couple: Ron drank and
Janet attempted suicide. Amazingly, in published accounts, Money portrayed the
parents as happy with their decisions about Brenda. He wrote about the case often,
calling it the “John/Joan” case.
Like many children sexed surgically one way or the other at birth, Brenda was
not told during these sessions what had been done to her. Today, some adults
assigned a sex at birth by surgeons still do not know they were born with ambig-
uous genitalia.
Like intersex children, Brenda increasingly suffered feelings such as, “I’m a boy
in girl’s clothes,” and resisted starting hormone shots to feminize her appearance.
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Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 287
For six months, Money had convinced pediatricians in Winnipeg to give Brenda
estrogen shots.
On a visit to Baltimore and alone with Brenda, Money introduced the child to
an adult male patient who had undergone a sex change. Brenda/Bruce ran from the
room, pursued by Money and staff, down a flight of stairs and out of the hospital,
and was finally helped by a sympathetic employee to get back to her parents in
their hotel room. There, the child vowed that, if ever forced to see Money alone
again, she would kill herself.
After a team of reporters from the British Broadcasting Corporation unearthed
problems with Money’s optimistic reports about Brenda, doctors in Winnipeg and
Hopkins grew increasingly suspicious about the case. After a crisis, Brenda’s father
told her the truth about her origins. Rather than being shocked, the child said, “I
was relieved. Suddenly it all made sense why I felt the way I did. I wasn’t some sort
of weirdo. I wasn’t crazy.”3
Brenda almost instantly decided to live as a boy. Almost 15 years old, he started
dressing as a boy and took the name “David.” He switched from getting injections
of estrogen to getting injections of testosterone.
As a boy, David soon started hanging out with girls and starting dating. He
found a girl he liked and told her the truth about his life. She already had figured
it out. She was unmarried with kids from two different men and wanted to marry
David. In 1990, they married.
David learned that false reports about his happiness were letting Money and
surgeons change other children. David eventually went public and attempted to
refute Money’s claims. In 2002, his twin brother, who claimed he had been neglected
during his childhood as “the normal one,” died of a drug overdose.
David made money from a book about him, As Nature Made Him: The Boy Who
Was Raised as a Girl, and from an attendant movie, but he squandered the money
in bad investments. Then his wife left him, and all these losses—his twin, his wife,
and his money—drove him to commit suicide in 2004 at age 38.
INTERSEX PEOPLE
David Reimer’s case was not typical of intersex people because it was entirely caused by
humans: first by human error, then by human decisions. Ninety-nine percent of people
undergoing sexual reassignment surgery were not made so by surgical mistakes.
In contrast, most intersex babies are born because of deviations in anatomical
development of the fetus and because of exposure during fetal gestation to hor-
mones and chemicals. Throughout history, some babies have always been born with
ambiguous genitalia, partially formed sex organs, microorgans, or organs of both
sexes (historically called “hermaphrodites” from the combination of the Greek gods
Hermes and Aphrodite). To describe such people, sexologists later used the more
neutral phrase intersex children or children with developmental sex disorders.
As in many areas of bioethics, the terms used to refer to people are controversial
and in flux. Here, some advocates prefer “people with developmental sex disorders.”
Advocates push this broader definition to include more people. People with devel-
opmental sex disorders may be more common than often assumed and have an
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288 Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons
incidence as high as 1 per 5,000. Because of shame and secrecy, such people may
be underreported.4
Physicians prefer the phrase “intersex people.” “Intersex” includes anomalies of
sex chromosomes, the gonads, the reproductive ducts, and genitals, including con-
genitally ambiguous genitals, contrasting internal and external sex anatomy, incom-
plete development of sex anatomy, and disorders of gonadal development.5
Transgender differs from intersex in a way that might be called internal versus
external. The former usually are people who feel they live in the body of the wrong
gender and as teenagers seek hormones and surgery to change to the right gender.
They feel dysmorphia about their bodies. Intersex people are usually identified exter-
nally because they have non-normal sex organs.6 Both kinds of people want the
right to choose their gender and both may seek hormones and surgery to do so.
Intersex and transgender people especially create problems in sports where
athletes must compete either as female or male. In the 1970s, Yale ophthalmologist
Richard Raskind underwent surgery to become Renée Richards and controversially
competed on the professional women’s tennis circuit against Martina Navratilova
and other women. At age 76, Dr. Richards now believes it’s not fair for transsexuals
to compete because “it’s not a level playing field” and that “maybe not even I should
have been allowed to play on the women’s tour.”7
In 2009, 18-year-old South African runner Caster Semenya had been running
as a girl, but gender tests showed the teenager had neither ovaries nor uterus and
had internal testes producing testosterone.8 She was allowed to keep her previous
prize and some prize money, and to run in the 2016 summer Olympics in Rio de
Janeiro, where she won the women’s 800 meter race.
Around 1931, surgeon Magnus Hirschfeld in Berlin attempted the first known
surgical sex reassignments. Rudolf Richter became Dora (“Dorchen”), and another
patient, Lili Elbe, had five operations, unfortunately resulting in her death. In 1952,
American George Jorgensen went public after his male-to-female sex-reassignment
surgery in Copenhagen to “Christine Jorgensen” and caused a sensation (Daily
News: “Ex GI Becomes Blonde Beauty”).9 Unlike the German cases decades before,
Christine received hormone therapy, which created much more successful results.
By this time, endocrinology had begun to flourish as a medical field.
Congenital Adrenal Hyperplasia
The most common cause of intersex is congenital adrenal hyperplasia (CAH), an auto-
somal, recessive, gene-based disease affecting the adrenal glands. CAH babies lack the
adrenal enzyme, 21-hydroxylase (21-OH), and therefore don’t produce enough cortisol
and aldosterone, while overproducing androgens. Due to an excess of androgens
during fetal development, females with CAH tend to have ambiguous genitalia.
Without enough aldosterone, which regulates salt retention, CAH children
experience vomiting due to “salt wasting.” This results in severe dehydration and,
if untreated, death. Newborn screening in many states picks up this condition and
it can be corrected at birth by adding or subtracting hormones or by giving salt.
Without proper treatment, CAH girls may be incontinent or have lifelong uri-
nary problems. Treatment includes medications such as hydrocortisone or fludro-
cortisones to boost levels of hormones. In some cases, female fetuses have been
treated in utero, to which we now turn.
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Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 289
Fetal Dex
In 2010, controversy erupted between bioethicists over a program using of prenatal
dexamethasone (aka fetal dex) for CAH fetuses.
For the prior 25 years and in a program pioneered by physician Maria New at
Mt. Sinai Hospital in New York City, fetal dex had been given to pregnant women
with CAH fetuses. Dexamethasone prevents androgens from reaching the fetus, and
hence prevents development of ambiguous genitalia. Research also suggests that
women with CAH treated with dexamethasone “show more typical gender behav-
ior” as adults than untreated fetuses. Without intervention, CAH females tend to
be tomboyish and more sexually oriented toward other females.
Once a woman learns of her CAH pregnancy, she must receive daily doses of
dexamethasone. Treatment with fetal dex starts only if tests show a female baby
affected with CAH. This often occurs with a mother who has already had one CAH
baby. Treatment cannot wait until after birth because virilization will have already
occurred (in other words, the female fetus has been exposed to masculinizing
factors).
In 2010, bioethicists Alice Dreger, Ken Kipnis, Hilde Lindemann, and others
sent a “Letter of Concern” to the Federal Drug Administration (FDA) and National
Institutes of Health (NIH), suggesting that Maria New’s studies were immoral and
questionable.10 In the fall of 2010, other bioethicists, led by Larry McCullough and
Ben Hippen, retaliated, accusing Dreger and others of (1) improperly using their
positions as bioethicists in challenging this protocol and (2) not having evi-
dence-based beliefs.11 Subsequent exchanges back and forth have been among the
most heated in the history of bioethics.12
Dreger and others raised many issues about this protocol. First, why was it
necessary to normalize CAH females? What’s wrong with being a masculinized
female? Is this some anti-butch lesbian protocol? Must medicine be used to normal-
ize every deviance? As one anonymous physician puts it, “To say you want a girl to
be less masculine is not a reasonable goal of clinical care.”
Second, was this protocol safe? Because fetal dex was being used “off label,” it
was in some sense experimental. Though it’s legal for physicians to prescribe off-
label treatment, it’s wrong for them to do research on patients without Institutional
Review Board (IRB) approval. Was Dr. New doing unethical experiments on our
most vulnerable subjects?
Third, was there possible long-term harm from fetal dex? For women who
received fetal dex in utero, we really won’t know until their lives are over.
Finally, intersex advocates such as Cheryl Chase and Sherri Groveman argued
that CAH and intersex teenagers should decide later how they want to be, not have
decisions made for them at birth as trumped-up emergencies by scared, misin-
formed, prejudiced people.13
In reply, traditionalists say that, if they are right, it will be too late for teens to
decide their gender because by then (as Money put it) the “gender gate will be
closed.”
Finally, Dr. New’s treatment appears to actually work and to prevent all CAH-
linked birth defects in women. In 2010, federal regulators sided with Dr. New and
upheld her research on fetal dex for CAH fetuses, absolving her of any charges of
unethical behavior.14
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ETHICAL ISSUES
What Is Normal and Who Defines It?
Eng and Chang Bunker (1811—1874), conjoined twins born in Siam, now called
Thailand, traveled with P. T. Barnum’s circus as “The Siamese Twins.” Because they
were treated with dignity and paid well for exhibiting themselves, they earned
enough to buy a farm, marry two women, and have many normal children.
In 1990, conjoined twins Abigail and Brittany Hensel were born in Minnesota.
They grew up there living happily together as adults. The Hensel twins had parents
who taught them that, even though the prejudiced rejected them, they were perfect
as they were born. Attitudes of parents and medical staff obviously affect the self-
esteem of children born with anatomical anomalies.
In ordinary life, anatomy matters greatly. Our anatomy limits what we can do
and how we experience the world. Socially, we expect behavior based on other
people’s anatomy. We normalize ourselves each day by cutting hair, dressing, and
so on. Because of gender norms, our chaotic social world is more predictable. People
of ambiguous anatomy frustrate us: We don’t know what to expect from them or
where they fit in. They create a problem for us, for society, so we seek to normalize
them or regard them as freaks.
In the transgender community today, the Genderbread Person (a picture used to
explain ideas about gender and sex) represents more choices: a picture of a heart
denoting sexual orientation; a picture of a brain denoting gender identity; an arrow
to the crotch, denoting biological sex; a penumbra around the person, denoting gender
presentation.15 Some intersex people orient heterosexually with the gender identity of
a female, but with androgynous sex organs, and present as a man. Other biological
males orient as gay males, have female sex organs, and present themselves as men.
Still other biological males present as females and orient (are attracted to) to females.
Currently, to get insurance to cover hormones for teenagers or sex-assignment
surgery, patients must be diagnosed with “gender identity disorder,” and it is rec-
ommended that applicants for surgery have “a year of experience living entirely as
a member of the new sex.”16
Secrecy in the Child’s Best Interest
Most families cannot accept a child with ambiguous genitalia or mixed reproductive
organs. In elementary school, bathrooms do not exist for males, females, and others.
For normal development, a child must have a gender identity. Therefore, it is best
for the child to have a clear gender assigned, one way or the other, than to have a
mixed one or none at all.
Consider normal social expectations: Everyone who knows a pregnant woman
wants to know the gender of her baby at birth. Many people learn the gender of
the fetus before birth, setting up a definite expectation. Families express disgust at
going home with not a boy or girl but an “it.”
How intersex children in school should be treated is a big moral issue. Intersex
children are often bullied or battered when they try to use the “wrong” bathroom
in public places.17 Androgyny, having the appearance and affect of neither gender,
is not a good option. If the person’s sexual orientation is heterosexual, others will
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Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 291
mistakenly interpret the lack of a clear gender as evidence of homosexual
orientation.
Furthermore, most children with ambiguous genitalia do not need to know
about their problems at birth. If such problems can be corrected, or given a better
appearance, then the adult can live and function normally. In fact, some people
may not even know they were “sexed” at birth and still live happy lives.
Finally, surgeons and parents at birth do the best they can. They believed that
lack of gender at birth was a social emergency and that decision had to be made.
It is wrong to second-guess them years later.
Ending the Shame and Secrecy
In his 20s, David Reimer met Cheryl Chase, who soon became the leading advocate
for intersex people and who argued that everyone should know his or her true
origins and make his or her own decisions about their gender and sexuality.
At birth, Cheryl had ambiguous genitalia and was first sexed as a boy, but after
18 months and with an unusual appearance, doctors decided to make her a girl.
Cheryl’s life refuted Money’s claim that professionals can assign gender with happy
results. Like some other intersex teenagers and adults, Cheryl never felt completely
male or female and lived between genders.
Cheryl argues that “what most harms the intersex child is the attitude that the
child suffers from something shameful that must be concealed and never publicly
acknowledged.”18 She argues that such children would be better off being told the
truth and being allowed to choose, in early adolescence, which gender they want to
be. Ideally, the parents would embrace the child as he or she is and not be ashamed.
In the late 1990s, Cheryl Chase and other intersex people challenged the view
of Hopkins/Money that early surgery and hormones were good for intersex chil-
dren. They picketed a meeting in 1996 of the American Academy of Pediatrics. With
David Reimer’s public testimony falsifying Money’s claims that biology doesn’t mat-
ter to gender, other intersex people emerged and claimed they were wrongly
assigned a gender at birth and irreversibly harmed by it. Some who were absent
had committed suicide.
During the same period, a more sophisticated view was emerging in endocri-
nology, genetics, and medicine about normal sexual development and intersex.
Behaviorism was fading, and biology was ascending.
This situation of intersex children parallels that of conjoined twins. As bioeth-
icist and historian Alice Dreger argues, most parents consider such births an emer-
gency at birth and ask surgeons to normalize conjoined twins into singletons, even
at the cost of killing both children.19
Alice Dreger and Cheryl Chase argued that (1) physicians and families should
wait until the child/adolescent can decide for itself what gender it wants to be;
(2) physicians should help families understand that a child with intersex can be
happy with an ambiguous gender; (3) if physicians and families guess wrong about
gender, intersex children can be irreversibly harmed; and (4) such crises at birth
about gender are socially constructed and mediated by ignorance and fear.
The American Academy of Pediatrics disagreed. In its 2000 guidelines on how
to deal with intersex children, it wrote, “The birth of a child with ambiguous
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292 Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons
genitalia constitutes a social emergency.”20 By sexing a child immediately at birth,
it hoped to prevent later harms, such as uterine infections, cancer, and infertility.
It also hoped to provide the child with working genitalia for later sexual satisfaction
and a stable gender identity. It wanted to foster parental bonding with a gender-
defined child and help the child to avoid being different.
Transgender/Intersex and Civil Rights
In the past 25 years, a remarkable change has occurred in North American culture.
Not only have gay men and lesbians been increasingly accepted as normal, but
transgender people have also been accepted. Popular television shows such as Glee
and DeGrassi: The Next Generation portray “trans” people. People magazine has done
feature stories on Chaz Bono’s female-to-male (FTM) transition21 and of supportive
parents who allow the same transition to start by giving puberty blockers to a group
of 30 transgender children as young as 10 years old in the Los Angeles area.22 A
child of Warren Beatty and Annette Bening, born Kathlyn, transitioned to Stephen,
making a video of himself in the popular series, “WeHappyTrans.”
Various singers present as sexually ambiguous: Lady Gaga, Freddie Mercury,
David Bowie, Elton John, George Michael, Melissa Etheridge, the Indigo Girls, K.
D. Lang, and many others. Children’s books such as Parrotfish, Luna, and I am J
help intersex kids understand who they are at an early age.23
In The New Yorker, Margaret Talbot portrays the female-to-gay-male transition
of Skylar, a precocious child living around Yale University whose parents supported
his transition at a young age. She writes:
Transgenderism has replaced homosexuality as the newest civil-rights frontier and
trans activists have become vocal and organized. Alice Dreger, a bioethicist and
historian of science at Northwestern University, says, “The availability of interven-
tion and the outspokenness of the transgender community are causing a lot more
people to see themselves as transgender, and at younger ages.”24
But, as the parent Danielle of a trans (FTM) child named Anna worries in Talbot’s
essay, is this just a social fad, like tattoos and breast implants for teenage girls?25
Should parents be eager to support such irreversible changes before children know
who they really are, and when they are subject to all kinds of peer pressure?
Of course, the most sensational case of a transgender person has been Caitlyn
Jenner. Because of her previous fame as a male Olympic gold medalist, her public
decision to undergo surgery and hormone therapy to become a woman captured
the covers of many magazines. She also starred in her own television show, I Am
Cait. As a result, several medical centers, including University of Alabama at Bir-
mingham (UAB), began special clinics for intersex and transgender patients.
Nature or Nurture, or Both?
When it comes to feeling attracted to members of the opposite sex or one’s gender
identity, things may be more complex than either having certain chromosomes or
being raised as a boy or girl.
As a graduate student in the 1970s, Milton Diamond of the University of Hawaii
discovered that exposure to hormones of a region of the Y chromosome (the SRY gene)
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Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 293
organizes pluripotent anatomical tissue into male or female sex organs.26 Now we know
that testosterone organizes formation of the Wolffian ducts, which then become the
internal, male reproductive system. Mullerian Inhibiting Hormone (MIH) simultane-
ously tells the precursor to Mullerian ducts, out of which the internal, female reproduc-
tive system is formed, to disintegrate, allowing the fetus to develop the male sex organs.
Diamond came to believe that biology and hormones made gender identity, not
childhood socialization, and hence, he became skeptical about Money’s claims about
Brenda/David.
The work of Diamond and others explains how intersex children come to exist. A
biologically female fetus gets overexposed to androgens from a mother’s unknown
tumor, from her using steroids, or from CAH-type conditions. This will give the child
and adult a masculine, or androgynous, unfeminine appearance. So “biology may be
destiny,” but it’s a biology that’s part genes and part what happens to the fetus in utero.
Diamond then became a lifelong critic of Money’s views on the social construc-
tion of gender. He was also horrified by Money’s attempt to use David’s case for
similar attempts to construct gender with other intersex babies.27 Money attempted
to suppress Diamond’s criticisms and, at one convention, assaulted Diamond.
An Alternative, Conservative View
Not everyone agrees that transsexual people should be warmly accepted or that
sexually ambivalent children should be encouraged to explore alternate sexual ori-
entations and presentations. Social and religious conservatives generally abhor such
acceptance and encouragement, regarding intersex people as deviant, morally
wrong, and even perverted.
One flashpoint, as with being gay or lesbian, concerns whether individuals can
choose their gender identity and second, whether society doesn’t push some con-
fused adolescents into sexual orientations that are not really theirs.
Ken Kipnis’s Proposals
In 1998, Professor Kenneth Kipnis, a prominent bioethicist in Hawaii, made three
recommendations with Milton Diamond about sex reassignment surgery:28
1. Impose a moratorium on surgical assignment of gender:
a. without the consent of the patient and
b. until evidence-based medicine proves that such surgery helps more than it harms.
2. Do not restart such surgery until comprehensive look-back studies show how
and when benefits of such surgery can be obtained.
3. Undo the deceptions by past physicians to living patients about such surgeries
imposed on them as infants. Tell them the truth.
Before agreeing to surgery on their children, Kipnis thinks that parents should be
given “bullet-proof” informed consent and understand that reassignment surgery may
compromise sexual sensation, end ability to have children, conflict with the later adult’s
feeling of true gender identity, lack proof of benefit, and be opposed by some experts.
Kipnis argued that because so few intersex children were told the truth, many
don’t know what happened as adults. Because of such secrecy, no long-term outcome
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294 Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons
studies have obviously been done. Like the juggernaut to normalize conjoined twins
without evidence, what has been done to intersex babies has been done in “an epis-
temic black hole.” In other words, when we ask, “How many adults seeking sex
reassignment surgery were sexed at birth and never told by their parents?” we do not
know the answer.
Whose responsibility is it then to tell intersex adults what happened to them?
Physicians? Parents? In cases of androgen insensitivity syndrome (previously called
“testicular feminization syndrome”), a couple sometimes comes to an infertility
clinic to figure out why the wife can’t get pregnant. Detailed, anatomical inspection
then reveals that the wife is a chromosomal male. The genetic counselor then expe-
riences the problem of how to tell the husband he’s married to a biological male
and how to tell the wife that she’s biologically male.
Do they both have the right to know the truth? Most geneticists think they do.
Of course, such revelations must be made gently and with care.
Medical Exceptions
While not intervening to treat intersex children will be medically harmful to these
children, it is morally imperative to intervene. But the definition of “medically harm-
ful” must be very tight and not stretched to appearance to conform to social norms.
CAH is the obvious case for intervention. Another similar case is complete
androgen insensitivity syndrome (CAIS), which also creates intersex children.
Some medical conditions have not achieved consensus. Although not medically
threatening, not everyone seems comfortable reducing the size of a very large cli-
toris (clitoromegaly) to give the girl a more normal appearance later as an adult.
Some people argue that this should be left alone.
Medically speaking, the long-term risk of cancer, heart disease, and other dis-
eases are unknown from sex-change surgery and from a lifetime of taking the nec-
essary hormones. Serious questions remain unanswered about how early hormones
can safely be started and whether they should be stopped after a certain age.29
The Dutch Approach: Delaying Puberty
In contemporary Holland, a progressive country about sex, intersex children attend
a special clinic where they are given hormones to delay the appearance of their
sexual organs.30 Without such delays, intersex children attempt suicide at high rates
and, loathing their gender, mutilate their bodies. They frequently report feeling
trapped in the wrong body or having feelings of no clear gender.
Puberty creates a crisis for intersex children, because their bodies start chang-
ing, seemingly irreversibly, into a gender they reject. It can create tremendous anx-
iety for a gender-identified girl to suddenly have her voice drop lower and to sprout
facial hair. Delays are good because usually the crisis is noticed at puberty only and,
once identified, counseling can help during which time puberty is delayed.
Dutch professionals seek delays to enable such kids to explore their sexuality
and choices about gender in a supportive atmosphere, in contrast to the one most
were raised in. In such a context, some may choose surgical assignment but some
may choose to live as they are, like adult conjoined twins.
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Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 295
Conclusion
No parent expects an intersex child, but no parent expects a child with any disabil-
ity, noticeable difference, or aberration. From this fact, it doesn’t follow that physi-
cians must try to normalize each child, guessing which way is right.
Between 2000 and 2006, the American Academy of Pediatrics revised its views
on intersex babies. Its 2006 Consensus Statement no longer considers the birth of
an intersex baby to be a surgical emergency.31 Few pediatric surgeons or pediatric
endocrinologists today take a decision lightly to sex a child at birth, and even fewer
would sex a child against its biological gender.
Still, most parents have trouble accepting an intersex child and are uncomfort-
able with an ambiguous gender or ambiguous sexuality. Sex assignment before
leaving the hospital may seem like a magic wand, making the problem go away—at
least for a while. It is also possible that most people so sexed are happy and that
only unhappy ones speak out as advocates.
FURTHER READING
David Benatar, ed., Cutting to the Core: Exploring the Ethics of Contested Surgeries, Lanham,
MD: Rowman & Littlefield, 2006.
Alice Dreger, One of Us: Conjoined Twins and the Future of the Normal, Cambridge, MA: Har-
vard University Press, 2005.
Jeffrey Eugenides, Middlesex, New York: Picador, 2003.
Linda Geddes, “Puberty Blockers Recommended for Transsexual Teens,” New Scientist,
December 10, 2008.
Louis Gooren, “Care of Transsexual Persons,” New England Journal of Medicine, vol. 364, no. 13,
March 3, 2011, pp. 1251–1258; letter, “Care of Transsexual Persons,” Walter Booking,
vol. 364, no. 26, June 30, 2011.
Leslie Feinberg, Transgender Warriors: Making History from Joan of Arc to Dennis Rodman,
Boston: Beacon Press, 1996.
Ken Kipnis and Milton Diamond, “Pediatric Ethics and the Surgical Assignment of Sex,”
Journal of Clinical Ethics, vol. 9, no. 3, 1998, pp. 398–410.
L. Sax, “How Common is Intersex? A Response to Ann Fausto-Sterling, Journal of Sex Research,
vol. 39, no. 3, 2002, pp. 174–178.
Jane Allison Sitton, “Introduction to the Symposium: (De)Constructing Sex: Transgenderism,
Intersexuality, Gender Identity and the Law,” William and Mary Law Journal of Women
and the Law, vol. 7, no. 1, 2000. http://scholarship.law.wm.edu/wmjowl/vol7/iss1/2
Margaret Talbot, “About a Boy,” The New Yorker, March 18, 2013, pp. 56–65.
Consortium on the Management of Disorders of Sex Development, Clinical Guidelines of the
Management of Disorders of Sex Development in Childhood, 2006, Intersex Society of
North America.
DISCUSSION QUESTIONS
1. Could most families handle raising an intersex child of ambiguous gender? Most
schools?
2. Would an intersex child with ambiguous gender be subjected to ridicule and
abuse by other children?
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http://scholarship.law.wm.edu/wmjowl/vol7/iss1/2
296 Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons
3. One family reportedly was wrongly told their fetus was male and planned the
nursery in blue. When told at birth that the child was female, the parents demanded
the child be sexed as a male. When surgeons there and at another hospital refused,
they went to another hospital in another state, where the operation was done.
Was this wrong?
4. Is sex reassignment surgery a good thing for adults not told of their unique
origins? If told, might some adults decide not to seek such surgery?
5. Are physicians and parents correct in intervening with fetal dex to prevent a
female fetus from later developing masculine tendencies?
6. Should physicians and parents wait and let CAH children decide which gender
they later want to be?
7. Is society prejudiced in making every teenager either a female or male, with
nothing in between?
8. How does the controversy about fetal dex reflect the nature–nurture contro-
versy about human traits?
NOTES
1. John Colapinto, As Nature Made Him: The Boy Who Was Raised as a Girl, Harper Collins, New York,
2000, p. 22.
2. Mel Grumbach, pediatric endocrinologist at the University of California, San Francisco, quoted in
As Nature Made Him, p. 75.
3. Colapinto, As Nature Made Him, p. 180.
4. L. Sax, “How Common Is Intersex? A Response to Ann Fausto-Sterling,” Journal of Sex Research 39,
no. 3 (August 2002) pp. 174–178.
5. Consortium on the Management of Disorders of Sex Development, Clinical Guidelines of the Man-
agement of Disorders of Sex Development in Childhood, Intersex Society of North America, 2006.
6. “What’s the Difference between Being Transgender or Transsexual and Having an Intersex Condi-
tion?” Intersex Society of North America, http://www.isna.org/faq/transgender.
7. Maureen Dowd, “Between Torment and Happiness,” New York Times, April 26, 2011, p. A23.
8. Associated Press, “Runner Reported to Have Internal Male Sex Organs,” Birmingham News, Sep-
tember 12, 2009, Section D, p. 2.
9. “Ex GI Becomes Blonde Beauty,” New York Daily News, December 1, 1952, p. A1.
10. “Letter of Concern from Bioethicists”(see following), http://www.fetaldex.org/letter_bioethics.html.
———
Dear Sir or Madam:
We write to express our grave concern over possible non-IRB-approved clinical research on
pregnant women that has been conducted under the auspices of Mount Sinai Medical Center and
Weill Cornell Medical College, Cornell University, under the direction of Dr. Maria New.
This work involves off-label administration of dexamethasone to pregnant women who may
give birth to girls with Congenital Adrenal Hyperplasia (CAH). It is our understanding that Dr.
New has long prescribed dexamethasone for purposes of preventing genital virilization associated
with CAH in 46,XX females. This indication is not approved by the FDA. Genital virilization is a
cosmetic issue, one that has been recognized within Dr. New’s field as independent of the genuine
medical concerns—often serious and life-threatening in some forms of CAH—unaddressed by prenatal
dexamethasone treatment. That is to say, prenatal treatment with dexamethasone is intended to avoid
a cosmetic issue associated with CAH, rather than to treat the medical issues that should be the
primary concern of physicians.[1] Furthermore, use of prenatal dexamethasone has been demon-
strated to bear significant iatrogenic risk.[2]
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http://www.isna.org/faq/transgender
http://www.fetaldex.org/letter_bioethics.html
Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons 297
Off-label use of prescription medication is a long-time practice of medicine that has not been
understood to constitute research requiring IRB oversight. We do not take issue here with the
practice of off-label prescribing in general. We are concerned instead with a particular instance of
what appears to constitute a de facto clinical trial involving many hundreds of patients now among
the targeted “subjects” of long-term research. In clear violation of established bioethical protocols,
these pregnant women appear to have been recruited (and perhaps are still being recruited) with-
out the benefit of IRB oversight.[3]
In professional contexts among her peers, Dr. New has publicly resisted discussion of the
details of the information pregnant women and their partners are provided. One online promotion
of the treatment with dexamethasone administered by Dr. New’s clinic nevertheless promised that
follow-up with hundreds of children treated prenatally over 20 years “has found no adverse devel-
opmental consequences. . . . the treatment appears to be safe for mother and child.”[4]
Human studies have demonstrated, on the contrary, that prenatal dexamethasone treatment
results in detrimental changes to the brains of children,[5] over 90% of whom will receive no ben-
efit from this treatment. (Only 1 in 8 fetuses started on this treatment are actually 46,XX CAH,
and of the 1/8 who are, 20% will not benefit from the treatment.) Children exposed prenatally to
dexamethasone for CAH show problems with working memory, verbal processing, and anxiety.[6]
Animal studies have also indicated reason to be very concerned about prenatal dexamethasone’s
effect on fetal brains.[7] Therefore, contrary to the apparent claims aimed at prospective patients,
dexamethasone treatment cannot responsibly be characterized as benign.[8]
Despite knowledge of risks to fetal development, it does not appear that physicians prescrib-
ing this drug to hundreds of women have sought IRB approval for clinical trials of dexamethasone
for the purposes of minimizing genital virilization in 46,XX females at risk for CAH in utero. Preg-
nant women who have been prescribed dexamethasone external to IRB-approved trials may not
have provided fully informed consent as would happen formally under an IRB-approved trial. Pub-
lic descriptions of this drug as safe and effective may have misled some women to believe the use
is FDA-approved, when it is not.
Given the well-established risks to fetal development, physicians should initiate treatment of
this type only through structured clinical trials with human subjects research protections in place.
Registered clinical trials ensure that women and their families make fully informed decisions with
respect to the risks they assume for themselves and on behalf of their future children. Studies
such as these also ensure that adverse effects will be noticed as soon as possible, and that any harm
that comes to women and their children provide the benefit of increased scientific knowledge that
can subsequently protect other women and babies from the same harms.
We call for rigorous investigation into possible regulatory violations in this matter. We also
believe that women who have been treated without the protection of IRBs should now be advised
of the information that may not have been made available to them at the time of treatment, and
that they should be given the most recent information from studies indicating long-term risks to
women and children. Finally, we agree with Dr. Walter Miller, Distinguished Professor of Pediatrics
and Chief of Endocrinology at the University of California San Francisco, who has written that “this
experimental treatment is not warranted and should not be pursued even in prospective clinical
trials.”[9]
Citations:
[1] Miller W. L. “Dexamethasone treatment of Congenital Adrenal Hyperplasia in utero: an exper-
imental therapy of unproven safety.” J Urol 1999; 162: 537–40.
[2] National Institutes of Health Consensus Development Panel, “Antenatal Corticosteroids Revis-
ited: Repeat Courses. National Institutes of Health Consensus Development Conference State-
ment, August 17–18, 2000.” ObstetGynecol 2001; 98:144–50.
[3] Kitzinger E. (Weill Medical School of Cornell University). “Prenatal Diagnosis & Treatment for
Classical CAH.” CARES Foundation, Winter 2003.
[4] Ibid.
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298 Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons
[5] French NP, Hagen R, Evans SF, Mullan A, Newnham JP. “Repeated antenatal corticosteroids:
effects on cerebral palsy and childhood behavior.”Am J ObstetGynecol 2004: 190:588–95.
[6] See, for example: [a]Hirvikoski T, Nordenstrom A, Lindholm T, et al. “Cognitive functions in
children at risk for congenital adrenal hyperplasia treated prenatally with dexamethasone.”J
ClinEndocrinolMetab. 2007; 92:542–8; and [b]Trautman, PD, Meyer-Bahlburg HF, Postelnek J,
New MI. “Effects of early prenatal dexamethasone on the cognitive and behavioral development
of young children: results of a pilot study.”Psychoneuroendocrinology 1995; 20: 439–449.
[7] Uno H., Eisele S., Sakai A, et al. “Neurotoxicity of glucocorticoids in the primate brain.” Horm-
Behav 1994; 28: 336–48.
[8] Lajic S, Nordenstrom A, Hirvikoski, “Long-term outcome of prenatal treatment of congenital
adrenal hyperplasia.” In Fluck, C. E. and Miller W.L. (eds): Disorders of the Human Adrenal
Cortex. Endocr Dev. Basel: Karger, 2008, vol. 13: 82–98.
[9] Miller W. “Prenatal treatment of classic CAH with dexamethasone: pro vs. con.” Endocrine
News Tri-Point Series 2008: 16–18. [Part 1 and Part 2.]
List of signers at: http://www.fetaldex.org/letter_bioethics.html
———
11. L. B. McCullough, F. A. Chervenak, R. L. Brent, and B. Hippen, “A Case Study in Unethical Trans-
gressive Bioethics: ‘Letter of Concern from Bioethicists’ about the Prenatal Administration of
Dexamethasone,” American Journal of Bioethics 10, no. 9 (September 2010), pp. 35–45.
12. http://fetaldex.org/AJOB_Sept_2012.html.
13. Sherri Groveman and Cheryl Chase, quoted in Benatar, ed., Cutting to the Core.
14. Lindsay Beyerstein, “Federal Regulators Vindicate Dr. Maria New,” BigThink, September 28, 2010,
http://bigthink.com/focal-point/federal-regulators-vindicate-dr-maria-new.
15. This sentence is indebted to Margaret Talbot, “About a Boy,” New Yorker, March 18, 2013, p. 59.
16. Louis Gooren, “Care of Transsexual Persons,” New England Journal of Medicine 364, no. 13 (March 3,
2011), p. 1256.
17. M. Dowd, “Between Torment and Happiness,” p. A23.
18. Cheryl Chase, 1998, interviewed by Robin Whites (November 28, 1997). Intersexuals (interview
with Chase). All Things Considered, NPR.
19. Alice Dreger, One of Us: Conjoined Twins and the Future of the Normal, Harvard University Press,
Cambridge, MA, 2005.
20. American Academy of Pediatrics (2000).
21. “I’m Finally Myself,” People, May 23, 2011, pp. 65–67.
22. Nancy Jeffrey, “Becoming Nikki,” People, July 8, 2013, pp. 48–52.
23. Ellen Wittlinger, Parrotfish, Simon & Schuster, New York, 2011; Julie Ann Peters, Luna, Little Brown,
Boston, 2006; Chris Beam, I am J, Little Brown, Boston, 2011.
24. Talbot, “About a Boy,” pp. 56–65.
25. Ibid., pp. 61ff.
26. Milton Diamond discovery, cited in Colapinto, As Nature Made Him.
27. In particular, Colapinto mentions two male twins with botched circumcisions born in Atlanta in 1985
and cases cited by Toronto child psychiatrist Kenneth Zucker, in As Nature Made Him, p. 249, 274.
28. Ken Kipnis and Milton Diamond, “Pediatric Ethics and the Surgical Assignment of Sex,” Journal of
Clinical Ethics 9, no. 3 (1998) pp. 398–410.
29. Gooren, “Care of Transsexual Persons,” p. 1256.
30. Linda Geddes, “Puberty Blockers Recommended for Transsexual Teens,” New Scientist, December
10, 2008.
31. Peter Lee et al., “Consensus Statement on Management of Intersex Disorders,” Pediatrics, 188, no. 2
(August 2006), pp. e488–e500.
pen07945_ch13_284-298.indd 298 9/8/16 9:52 AM
http://www.fetaldex.org/letter_bioethics.html
http://fetaldex.org/AJOB_Sept_2012.html
http://bigthink.com/focal-point/federal-regulators-vindicate-dr-maria-new
This chapter describes a homeless woman living on the Upper East Side of
Manhattan. Psychiatrists committed her against her will to be treated for schizophre-
nia. It also discusses some questionable cases of research on people with schizophrenia.
THE CASE OF JOYCE BROWN
In the 1980s, when mentally unstable, homeless people overwhelmed Manhattan,
the public wanted something done. In 1987, New York City started Project Help to
assist needy, homeless people, but these people resisted. Could Project Help seize
them anyway for psychiatric evaluation and involuntary commitment? Or should
homeless people just be left (as some defenders of Project Help criticized) “to die
with their rights on”?
The first person picked up was 40-year-old African-American, Joyce Brown. For
18 months, she slept outside an ice-cream parlor on Second Avenue and 65th Street,
near Gracie Mansion, where Mayor Ed Koch lived. During the day, she panhandled
for money to buy food, cigarettes, and toilet paper. Sometimes, Mayor Koch spoke
to her and he helped Project Help choose her as a test case.
Controversially, Project Help broadened its standards for involuntary commit-
ment beyond the standard, legal requirements of mental illness and dangerousness.
It added two new criteria: “self-neglect” and a “need to be treated for mental
illness.”
Joyce’s physical appearance suggested mental instability. Her teeth needed care;
she tucked her hair under a bulky, white, knit cap. She looked disoriented, mutter-
ing to herself as she panhandled. She sometimes sang, “How much is that doggie
in the window?” When residents of the block threw her money, she tossed it back.
One neighbor described her as “full of rage.” She cursed approaching men but liked
babies. She defecated and urinated in gutters. On bitterly cold nights, police tried
to take her to shelters, but she resisted.
C H A P T E R 1 4
Involuntary Psychiatric
Commitment and Research on
People with Schizophrenia
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300 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
Project Help forcibly brought her to the emergency room of Bellevue Hospital,
where against her will, psychiatrists injected 5 mg of Haldol, an antipsychotic drug,
and 2 mg of Ativan, a fast-acting, short-term tranquilizer. They then took her to a
new 28-bed, locked psychiatric unit on the 19th floor.
The Legal Conflict
After psychiatrists evaluated Joyce Brown at Bellevue, they informed Mayor Koch
that she was neither sufficiently insane nor sufficiently dangerous to legally commit
without her consent. Although schizophrenic, Brown did not pose danger to herself
or others. New York state law allowed involuntary injections only in emergency
rooms; in the psychiatric unit, Joyce refused further drugs.
Once police bring people to a psychiatric facility, their release rarely happens
until a judge holds a hearing. Before her hearing with Judge Robert Lippman, Joyce
called the American Civil Liberties Union (ACLU). If she would waive confidential-
ity and agree to publicity about her case to help other homeless people, which she
did, the ACLU agreed to represent her.
Her three sisters from New Jersey testified at the hearing. Married, working,
and middle class, they had been searching for Joyce for 18 months. All four girls
grew up in Elizabeth, New Jersey, and were well-churched daughters of a Methodist
minister.
They described Joyce as a “bright, attractive, and happy-go-lucky child.” She
had graduated from both high school and business school and had held several jobs
at Bell Laboratories. During these years, she had been a “big, healthy girl” who wore
nice clothes and jewelry and “always drove around in a new Cadillac.”
They said that Joyce had started taking heroin in her 20s and later cocaine. She
worked for 10 years as a secretary for the New Jersey Human Rights Commission
(HRC). In 1982, her mental health and her job performance plummeted. In 1985,
at age 38, because of absenteeism and use of drugs, the HRC fired her. She then
left her family and went to a shelter in Newark, but after she assaulted someone
there, the shelter expelled her.
Her sisters then tricked her into a voluntary commitment in the psychiatric
ward of East Orange General Hospital in New Jersey. When Joyce was diagnosed
as psychotic, psychiatrists forced antipsychotic drugs on her. She resisted and atten-
dants put her in an isolation room. Altogether, she spent two weeks locked up
there, after which she fled to East 62nd Street in Manhattan, living under various
aliases. She avoided shelters for the homeless, considering them dangerous for unat-
tached women. She shunned her sisters, fearing they would commit her again.
At her hearing, Brown spoke well, called herself a “professional street person”
and answered probing questions:
Q: Why had she torn up paper money given to her? A: “I only need $7 a day to
live on. I tore up additional money given to me to prevent being robbed of it at night.”1
Q: Why did she defecate on herself? “I never did,” she replied, although she
had used the streets because no local restaurant would let her use its restroom. “I
offered to buy something and they still refused.”
Four psychiatrists testified for the city that Brown suffered from schizophrenia,
should be treated in an institution, and, if left on the street, would deteriorate. They
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 301
denied that this was “political psychiatry” and stated that Brown’s “self-neglect” was
“so severe” that she should be helped against her will. They noted that people with
schizophrenia are often bright and have periods of rationality.
Three psychiatrists testified for ACLU that she was not psychotic, not danger-
ous, not unreasonable in her answers, and not incapable of caring for herself on
the streets. In his summation, an ACLU attorney said the city had not proved that
Brown showed danger to herself or others: “The only evidence the city had is that
she goes to the bathroom in the streets. I see that in New York City every day,
because there’s a lack of public restroom facilities.”
In her rebuttal, the city’s attorney replied, “Decency and the law and common
sense do not require us to wait until something happens to her. It is our duty to
act before it is too late.”2
Judge Lippman ordered Brown freed. He had found her “rational, logical, and
coherent” throughout her testimony;3 he said that she “displayed a sense of humor,
pride, a fierce independence of spirit, [and] quick mental reflexes”; and he noted
that she met none of the conditions set forth in O’Connor v. Donaldson (to be dis-
cussed later).
Even if all psychiatrists had considered her psychotic, he stressed that the city
had not proven her dangerous to others or herself:
I am aware that her mode of existence does not conform to conventional standards,
that it is an offense to aesthetic sense. [Nevertheless] she copes, she is fit, she
survives … [s]he refuses to be housed in a shelter. That may reveal more about
conditions in shelters than about Joyce Brown’s mental state. It might, in fact, prove
she’s quite sane. [Also] there must be some civilized alternatives other than invol-
untary hospitalization or the street.4
After the hearing, Brown’s sisters called the judge’s decision “racist” and “sex-
ist.” They argued that if his own wife or mother were sleeping on the streets, “he
would not stand for it.” They insisted that Joyce needed treatment.
The sisters then revealed that after Joyce had been hospitalized, they had gotten
her declared mentally disabled and she had accordingly received $500 a month in
Social Security Disability payments, which they had been holding for her. Brown
had refused the money, rejecting the “lie” that she was mentally disabled.
After her victory, Brown and her ACLU lawyers held a press conference, where
she said, “I didn’t want to play the game before, but now I am. … I am going to
get an apartment, go back to work, and get my life together.” She criticized the city
for spending $600 a day on her care: “I could be living at Trump Tower.”5
Why did Brown appear so different at her hearing than on the streets? Her
psychiatrists claimed she had improved rapidly in the hospital. She dismissed their
claim, asserting she had never been crazy. She resented being taken into Bellevue
like “cattle” and affirmed that living on the street was a rational choice. Her sisters
dismissed this assertion: “You might be able to survive one winter, or even two, but
you can’t survive that way forever.”
Mayor Koch blasted Judge Lippman’s decision: “If anything happens to that
woman, God forbid, the blood of that woman is on that judge’s hands.” Reminded
by a reporter that Lippman had found Brown lucid, Koch replied, “This woman is
at risk. When she lay on the ground in the rain, in the snow, uncovered—was that
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302 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
lucid?”6 When asked if Brown’s commitment was “political psychiatry,” Koch asked,
“Who would claim that?” When told that it had been Brown herself, he replied,
“That alone proves she’s crazy.”7
The city and Koch appealed to a five-member New York State appellate court,
where the ACLU argued that Brown would not return to the streets but would live
in a supportive residence for the homeless. The city argued that where she would
live was irrelevant: “She was not hospitalized because she was living on the streets
[but because] three psychiatrists said she needed medical and psychiatric help.”
The appellate court reviewed the testimony of a social worker who said she had
observed “fecal matter” on the sheets in which Brown wrapped herself. The appel-
late court reviewed the testimony of another psychiatrist who said that Brown had
told him she often defecated and urinated on herself. It found that “the evidence
presented in this case clearly and convincingly demonstrated her past history of
assaultive and aggressive behavior.”8
The appellate court overruled Judge Lippman, saying he had placed too much
emphasis on Brown’s testimony instead of that of the psychiatrists. Surprisingly, the
majority noted that this case required the high standard of proof of “clear and
convincing evidence” rather than the weaker one of “preponderance of evidence,”
and that the city had met that higher standard.
After the appellate decision, Koch said, “Up until this moment, the only treat-
ment has been a loving, safe environment. Now we will seek to treat her medically.”
But New York state law required the city to get a court order to medicate her against
her will. In 1988, a state judge ruled against forced medication. Bellevue Hospital
then released her, saying there was no point in still holding her.
After being held for 84 days and then released, Brown said:
I was incarcerated against my will. … [I was] a political prisoner. The only thing
wrong with me was that I was homeless, not insane. You just can’t go around
picking everyone up and automatically label them schizophrenic. I’m angry at
Mayor Koch, the city and Bellevue. They held me down and injected me . . . They
took my blood against my will. …
I need a place to live; I don’t need an institution. …
People are treated differently just because of your economic status, [because
of] what you look like and where you live. …
I was mistreated, mentally abused, and I will never, ever, forget this.9
Released to live in a hotel for women run by a nonprofit agency, Brown worked
temporarily as a secretary in the ACLU office. In early 1988, she became a celebrity.
She received half a dozen offers for books and movies and dined at Windows on
the World, a restaurant atop the World Trade Center. She appeared on The Donahue
Show and 60 Minutes. She loved the attention.
She lectured to law students at Harvard on “The Homeless Crisis: A Street View.”
She observed, “It looks like I have been appointed the homeless spokesperson.”
Then things worsened. Her roommate at the hotel said Joyce had “a lot of anger
inside.” While walking to work, she muttered racial slurs and obscenities to herself.
By March 1988, Joyce began begging in Times Square, shouting obscenities at pass-
ersby. Asked about herself, she insisted, “I’m not insane.”10
In September, police charged her with possession of heroin and two hypoder-
mic needles in a Harlem housing project.11
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 303
During 1989, Joyce lived in a supervised residence for formerly homeless women
in Manhattan. Unconfirmed reports indicated that she entered and left psychiatric
hospitals between 1989 and 1994. After a decade of interventions, her physicians
discovered that addiction to drugs was her main problem, not schizophrenia. At
one time, she had thrown off drugs and lived on her own and attended a daily
support group for former drug users. Thus, she may never have been truly schizo-
phrenic, and hence never met the commitment standards of O’Connor v.
Donaldson.
In 2000, a newspaper reported that Brown attended a talk sponsored by the
Institute for Community Living and described her as “formerly homeless,” as con-
tinuing to receive drug counseling and having recently suffered a stroke.12 Accord-
ing to the Social Security Death Index, Joyce Brown lived her last years in Kings
County, Brooklyn, and died on November 29, 2005, at age 58.
Ideology and Insanity
Early humans believed that the voices characteristically heard by people with schizo-
phrenia came from the gods. Psychologist Julian Jaynes claims that the first humans
to have identifiable thoughts experienced them as terrifying internal voices and
argues that the human brain evolved as bicameral to control them.13
Hippocrates held that mental disorders had natural causes. Plato thought an
imbalance between parts of the mind caused insanity. Roman physician Galen con-
tinued this naturalistic concept.
The Middle Ages abandoned this naturalistic approach, substituting demonic
possession and exorcism. The insane sometimes were forced to live on a ship of
fools, which sailed from port to port to take on food and water but which never
was allowed to disembark its human cargo.
From the fifteenth to the eighteenth centuries, the public saw the insane as
possessed by demons, or as witches, and often killed them.
The sixteenth century saw the founding of Bethlehem Royal Hospital in Lon-
don, based on naturalistic principles. It had more patients than it could handle, and
hence, a slurring of its name lies behind “bedlam.”
The French physician Philippe Pinel (1745–1826), head of the Bicêtre Hospital
for the insane in Paris, unchained his patients, used compassion, and looked for
natural causes, all with therapeutic results.
In the nineteenth century, Quaker institutions practiced “moral treatment,”
allowing patients to roam the grounds, work in gardens, and live in a homelike
atmosphere.
In the twentieth century, psychiatry embraced pharmacological treatments. Psy-
chiatry then faced two related, ethical issues: commitment for political or social
deviance and patient rights against involuntary treatment.
Patients’ Rights
If one accepts that the insane need therapeutic help rather than criminal justice,
then the insane need no trial to commit them for treatment. In a benevolent system,
committing psychiatrists act in the best interests of such patients.
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304 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
In the 1960s and 1970s, movies such as the Oscar-winning One Flew over the
Cuckoo’s Nest (1975) attacked such benevolent commitment as unjust. Lawyers who
defended patients’ autonomy argued that psychiatric diagnoses were biased, that
large public mental institutions abused patients, and that psychiatry needed checks
and balances. These lawyers eventually battered down the locked doors of psychi-
atric wards.
In this battle, psychiatry saw itself as benevolent and argued that liberal lawyers
had deprived the insane of necessary treatment. It emphasized that biochemical
imbalances caused schizophrenia, which could be rectified pharmacologically. How-
ever, some people with schizophrenia had to be forced to take their medications or
they would fare poorly.
Thomas Szasz, a famous gadfly in psychiatry, saw no problem with patients
who voluntarily sought help, because psychiatrists properly should help them. He
criticized forcing psychiatrists on people like Joyce Brown—people who did not see
themselves as mentally ill and who resisted intervention. Szasz held that such invol-
untary commitment rarely benefited the patients and politically existed to rid soci-
ety of strange people.
Szasz essentially argued that a physical disease, such as AIDS or cancer, has a
physical cause. Some mental illnesses have a physical cause in the brain, and these
mental illnesses are real. But pseudo mental illnesses have no physical cause and
merely result from problems in living. A mental illness with no physical cause, Szasz
famously held, is a myth, not a disease. (Szasz did not claim, as some critics say,
that most mental illness is a myth.)
Szasz concluded that psychiatry could not be objective, or value-free, in social
cases. He held that it is “much more intimately related to problems of ethics than
is medicine in general.” Consider that interpersonal relations—relationships
between wife and husband, between the individual and the community, among
colleagues, among neighbors—inevitably involve stress, conflict of interests, and
strain. Much of this disharmony has to do with incompatible values, and to pre-
tend that psychiatrists can offer value-free approaches to resolving them is ludi-
crous: “Much of psychotherapy revolves around nothing other than the elucidation
and weighing of goals and values—many of which may be mutually contradictory—
and the means whereby they might best be harmonized, realized, or
relinquished.”14
Szasz wonders who truly defines norms of “correct” and “psychotic” behavior.
He opposed classification of personality disorders as mental illness. According to
him, psychiatry presumes that love, continued life, stable marriage, kindness, and
meekness indicate mental health, whereas hatred, homicide, suicide, repeated
divorce, chronic hostility, and vengefulness indicate mental illness. These presump-
tions are evaluative, not factual.
A famous study by D. Rosenhan, “On Being Sane in Insane Places,” figured
famously in movements for rights of patients. In this study, several sociologists,
psychiatrists, and others voluntarily entered mental hospitals, saying they heard
voices—a major symptom of schizophrenia.15 Once committed, they acted normally
and no longer mentioned their voices. Because of the label “schizophrenic” in their
medical charts, the staff continued to see them as schizophrenic. Ironically, although
the staff did not see through the sham, several of the genuine mental patients did.
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 305
Legal Victories for Psychiatric Patients
In 1972, in Wyatt v. Stickney, Alabama federal judge Frank Johnson ruled that a
committed mental patient must either receive treatment or be released. Johnson’s
decision specified the institutional conditions necessary to ensure minimal treat-
ment: at least 2 psychiatrists, 12 registered nurses, and 10 aides for every 250
patients. Even in 2000, many states for years had not met this minimal standard.
Johnson required state mental institutions to provide individualized treatment
plans, to allow patients to refuse invasive electroconvulsive therapy and lobotomies,
and to establish the least restrictive conditions necessary for treatment.
Johnson’s ruling prefigured the O’Connor v. Donaldson decision by the U.S.
Supreme Court in 1975.16 In 1943, at age 34, Kenneth Donaldson got into a fight
with coworkers over politics and someone knocked him out. His parents considered
him crazy and petitioned a Florida judge to commit him. Committed, he underwent
11 weeks of electroshock treatment and was then released.
In 1956, while he was visiting his parents in Florida, his father asked for a sanity
hearing for Donaldson, saying that his son had a persecution complex. The judge
then committed Donaldson to the Florida State Mental Hospital, where he was held
against his will for 15 years. During those years, he constantly petitioned the courts
for a new hearing. All the while, he rarely saw a physician and never received
treatment. Inside the institution, staff presumed him insane and—like Rosenhan’s
impostors—he could not prove otherwise. In 1971, when his case was about to be
heard, officials released him.
A lawyer then helped Donaldson sue for damages against the superintendent
of the institution, J. B. O’Connor. The case reached the Supreme Court, which
decided for Donaldson, ruling that he should not have been held against his will,
even if he was mentally ill, unless he had been dangerous to himself or others and
had no means of existing outside the institution.
O’Connor v. Donaldson established two necessary conditions for involuntary
commitment:
1. Suffering from mental illness (being “insane”)
2. Being dangerous to others or being dangerous to oneself
Note that both conditions—insanity and danger to oneself or others—must be met
for involuntary commitment. Judges later interpreted dangerousness as imminent
risk to life or imminent risk of bodily harm; “imminent” means within days or
hours. Two psychiatrists arbitrate. Evidence of dangerousness to oneself can consist
of attempted suicide, threats of suicide, and gross neglect of basic needs.
With these legal changes, the courts moved from a medical model of civil com-
mitment, which had been used in the early 1960s, to a patient’s rights model in the
1970s.
In the 1990s, many states added a third requirement for involuntary commitment:
3. Provision of the least restrictive environment by the institution
Conditions 1 (mental illness) and 2 (dangerousness) applied in all states, since the
Supreme Court had established them; two-thirds of the states also applied condition
3 (least restrictive environment).17
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306 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
In some states, the O’Connor criteria have been interpreted to mean that a
person must commit an overt act before a hearing occurs for involuntary commit-
ment. This interpretation is controversial and has been opposed by relatives, who
can often perceive a pattern of threats and hostility and do not want to wait until
someone is injured or killed before a hearing takes place. At present, courts and
legislatures are struggling with the implications of this “overt act” requirement.
Deinstitutionalization
These legal decisions entailed the release of many mental patients from large state
institutions, because such institutions often could not provide individualized treat-
ment (as required by Wyatt) and they were not the least restrictive environment for
patients.
Other factors also contributed to deinstitutionalization. New psychotropic med-
ications allowed more outpatient treatment. In 1963, the Kennedy administration
advocated small, community-integrated facilities rather than large, impersonal state
institutions. In the words of President Kennedy, “Reliance on the cold mercy of
custodial isolation will be supplanted by the open warmth of community con-
cern.”18 Other factors pushing deinstitutionalization in the 1970s included tight
budgets, psychiatrists who sought lighter workloads, and a general distrust of
authority.
All these factors emptied American mental institutions. By 1980, state institu-
tions released 50 to 75 percent of their mental patients. In 1955, nearly 560,000
patients lived in state mental institutions; in 1988, only 130,000 did so. All levels
of government saved money, this pleased the ACLU, and mental patients flooded
into communities.
But the “warmth of community concern” envisioned by John Kennedy did not
appear. Communities rejected halfway houses. Mental patients scraped by on warm-
air grates more often than in group homes. Bag ladies suddenly appeared on city
streets. Charities set up soup kitchens for hungry street people. In the 1980s,
Reaganites hailed soup kitchens as proof that the homeless didn’t need government
housing, rather than seeing it as a Band-Aid.
Fifty years after Kennedy began it, deinstitutionalization has failed to help
people with mental illness because governments never allocated funds for commu-
nity homes; because communities rejected halfway homes; because mental health
services were fragmented among county, state, and federal agencies; because hous-
ing was scarce; and because the legal pendulum had swung toward patients’
rights.19
During the month psychiatrists released Joyce Brown from Bellevue, under its
expanded criteria, Project Help helped 466 homeless mentally ill people. It esti-
mated that 800 to 1,000 such people still lived on Manhattan’s streets.
When New York City officials planned Project Help, they assumed that people
such as Joyce Brown would stay for a few weeks in psychiatric hospitals and would
then be moved into community facilities, where they would live under supervised
conditions. Over the past decades with increasing inequality and tight state budgets,
many more of the psychiatric homeless have been forced to live on the streets on
their own.
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 307
Violence and the Mentally Ill Homeless in the Cities
In 1977, Juan Gonzalez, a homeless man who heard voices, went berserk on the
Staten Island Ferry and killed two people with a sword.
The concept of potential danger soon came to be used to justify holding some-
one temporarily for a cooldown observational period. Gonzalez had been picked up
for such a period just before the killings and diagnosed as a paranoid schizophrenic,
but he had not been considered imminently dangerous to others, so he was
discharged.
In 1991, Kevin McKiever, a homeless man who had gone to Bellevue Hospital
seeking care and had been turned away, stabbed Alexis Walsh to death, a former
Radio City Rockette. In 1993, Christopher Battiste, a homeless mentally ill drug
abuser, murdered an elderly woman in the Bronx.
Larry Hogue, a homeless, mentally ill African-American Vietnam veteran,
sometimes lived peacefully on a street corner in the Upper West Side of Manhattan,
but when he took illegal drugs, he became hostile, violent, and what 60 Minutes
called the “wild man of 96th Street.” A judge ruled that he could be involuntarily
committed for detoxification, but that would need to be released “as soon as he
decides to seek outpatient care.”20
In 1999, two schizophrenic men not taking their prescribed medications pushed
innocent people in front of oncoming subway trains in New York City, killing a
young woman named Kendra Webdale and leaving the other victim without legs.
Both men had a history of violence. In previous years, similar events had occurred:
Reuben Harris, who suffered from paranoid schizophrenia, had 12 hospitalizations
and a history of violent behavior, pushed Song Sin to her death in the same manner
in 1995. Jaheem Grayton, who also had a history of violence and severe mental
illness, pushed Naeeham Lee to her death after struggling to steal her earrings in
1996. Mary Ventura pushed Catherine Costello into the path of a subway train in
1985, three weeks after being discharged from a psychiatric hospital.21
These cases resulted in passage in New York in 1999 of Kendra’s Law, where a
psychiatrist or relative can force hospitalization for a mentally ill person who has
been hospitalized within the past three years, who has a history of violence, and
who will not take his medication. Forty-five states have passed laws implementing
such Assisted Outpatient Treatment programs, where outpatients can be forced to
take medications and remain under supervision (Maryland, Massachusetts, New
Jersey, New Mexico, Connecticut, and Tennessee have not).22
The courts and the general public expect psychiatrists to predict dangerousness
among the mentally ill, but can they? To assess the potential for violent behavior,
emergency-room psychiatrists simply ask patients about their own tendencies
toward violence and their own past acts of violence.23 This is not a sophisticated
tool, although in practice this question seems to work better than any other test.
The famous legal decision Tarasoff should be noted here.24 In this case, Prosenjit
Poddar confided in 1969 to his psychotherapist at the University of California that
he planned to kill Tatiana Tarasoff, which he did. Tarasoff’s parents sued the thera-
pist and claimed the university should have broken confidentiality and warned the
girl and her parents of Poddar’s threat. The actual decision has been misinterpreted
to say that therapists must breach confidentiality to warn potential victims when life
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308 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
is at stake. In fact the 1976 decision merely said that, in such situations, therapists
have a duty to take “reasonable steps” to protect potential victims, such as notifying
police or seeking involuntary commitment of the person making the threat.
ETHICAL ISSUES
Paternalism, Autonomy, and Diminished Competence
Paternalism in medicine is treatment of adult patients as incompetent children who
do not know their own best interests. Under which conditions might paternalism
be justified? One condition is temporary incompetence, followed by a return of com-
petence. In these situations, if patients later agreed with paternalism, for example,
where people prevented from committing suicide later agreed that they were glad
to be alive, it could be justified.
Questions about patients’ competence underlie any discussion of paternalism.
The American legal system tends to treat mental patients as if they were either
totally competent or totally dysfunctional and thus subject to involuntary treatment.
Many observers argue that this is a false dichotomy. Competence is not an either-or
capacity but a matter of degrees on a gradient.
Another question concerns proof of competence and incompetence. This issue
is not necessarily clear-cut: Psychiatrist Virginia Abernethy argues, for instance, that
“disorientation, mental illness, irrationality, [and] commitment to a mental institu-
tion do not conclusively prove incompetence.”25
Of course, Joyce Brown rejected her diagnosis, hoped that she was sane, and
thought she could take care of herself. Joyce was generally considered to be com-
petent; the doctors claimed she had a focal incompetence, a specific ineptitude to
make decisions about her own treatment. Abernethy notes, “The criterion of a focal
delusion is dangerously liable to error because a patient can easily be seen as delu-
sional in an emotionally charged interchange, when in other circumstances he
addresses the same issue appropriately.” Abernethy sums up: “Competence is pre-
sumed and does not have to be proved. Incompetence has to be proved.”
Homelessness and Commitment
What really mattered in the Joyce Brown case—insanity or homelessness? The ACLU,
noting that Brown did not want to leave the street and had never been proven
dangerous, argued that her presence embarrassed the rich people in her neighbor-
hood. New York City had thousands of people like her, so why was there no outcry
about others? Why did no one write letters to the New York Times about the Joyce
Browns in the Bronx? Once Brown was gone, how many of her former neighbors
on the Upper East Side inquired about her?
Norman Siegel, executive director of ACLU, extended this argument to Koch and the
city as well: “In sweeping up the homeless, the Mayor is attempting to place these people
out of sight and out of mind and hide the crisis from the public consciousness.” Siegel
claimed that Project Help targeted areas seen by tourists and inhabited by the rich.
Mayor Koch emphasized that homeless people were picked up for treatment,
not to remove them from public places. Homeless people gravitated to rich areas
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 309
because they were safer there and such places offered them better opportunities for
begging.
Koch claimed that Brown’s insanity was the true issue and her homelessness
merely a side issue. Her ACLU lawyers disagreed: “The Joyce Brown story has cap-
tured the issue of the homeless that a lot of people have been trying to deal with
for years.”26 Koch’s goal, the ACLU implied, was to get homeless people off the
streets, not to treat the mentally ill; Koch didn’t seem worried about people with
schizophrenia who camped out in bad neighborhoods.
The ACLU suggested reinstating public baths (which had been widely available
in the city during the Depression) and using condemned housing as temporary
shelters. Incarcerating the homeless “for their own good” was cheap; building homes
for street people costs much more.
Psychiatry and Commitment
During this case, ACLU lawyer Robert Levy and psychiatrist Robert Gould, both of
whom testified for Brown, emphasized the political dangers of involuntary round-
ups, handcuffing, forcible injections of medication, and confinement in locked
wards. Levy and Gould said that Brown had been examined at least five times
previously and had been found “not to require involuntary hospitalization.” They
claimed that nearly half of the 215 people brought to emergency rooms by Project
Help did “not require involuntary hospitalization.” They argued that to allow “pre-
ventive detention based solely on nebulous predictions of ‘future self-destructive
behavior’” would invite abuse. They warned of “totalitarian regimes” using psychi-
atry for control of dissidents.27
When confronted with arguments like this, Mayor Koch replied, “This is not
political psychiatry! This is not Russia! We’re trying to help this woman!”
On the other hand, how broadly should standards of commitment sweep? In
cases like that of Brown, how many people might be forced into mental hospitals
by relatives? (Isn’t this what Barbara Streisand portrayed in Nuts?) How many psy-
chiatrists might use medication, time-out rooms, restraints, and continued commit-
ment not as treatment but as punishment for patients who thwart their will?
Part of the debate about Brown’s case concerned the ability of psychiatry to
help people with schizophrenia. Judge Lippman noted that the four city and three
ACLU psychiatrists had disagreed dramatically, and concluded, “It is evident that
psychiatry is not a science amenable to the exactness of mathematics or the pre-
dictability of physical laws.”
Most psychiatrists objected. They pointed to people with schizophrenia who
were dysfunctional but who gained years of ability after being forced to take med-
ication. They said that such patients stabilize and become free from delusions and
that many patients, if they take their medication regularly, can return to life outside
institutions. The psychiatrist Paul Chodoff defended limited involuntary commit-
ment as follows:
Is freedom defined only by absence of external constraints? Internal physiological or
psychological processes can contribute to a throttling of the spirit that is as painful
as any applied from the outside. The “wild” manic individual without his lithium,
the panicky hallucinator without his injection of fluphenazine hydrochloride and the
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310 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
understanding support of a concerned staff, the sodden alcoholic—are they free?
Sometimes, as Woody Guthrie said, “Freedom means no place to go.”28
In fact, many people suffering from paranoid schizophrenia can be improved
by treatment. The big issue here is whether some should be forced to be so improved.
Suffering and Commitment: Benefit and Harm
Columnist Ellen Goodman argued that the ethical questions in this case boiled
down not to whether people like Joyce Brown would harm themselves but whether
they suffered. Brown should be taken off the streets, she argued, before she dies
there “with her rights on.”29
But was the matter so straightforward? To say that commitment is justified to
end suffering assumes first that a person is really suffering and second that invol-
untary psychiatric commitment will stop that suffering.
Consider the first assumption that the person suffers. When someone like Joyce
Brown protests that she does not need or want help, it can be asked, as Thomas
Szasz asked, who determines—other than the patient herself—that she is “suffering”
enough to be locked inside a psychiatric ward? Who bears the onus of proof, the
patient or the psychiatrist?
With regard to the second assumption that involuntary commitment can help,
it is important to consider the nature of involuntary commitment. What Brown
feared most was another commitment to an inpatient unit like the one at East
Orange Hospital. Would she really be helped by involuntary psychiatry, involuntary
medication, and involuntary therapy in a locked unit within a large public institu-
tion? In another time-out room?
Brown’s court-appointed psychiatrist found that she suffered from “serious
mental illness” and would benefit from medication—but that she would suffer more
from forced treatment than from the mental illness itself. In such a situation, she
might harm herself while trying to resist the administration of antipsychotic medi-
cations and tranquilizers.
Moreover, the long-term side effects of antipsychotics of this period were as bad
as the original disorder: Administered over years, they created tardive dyskinesia
in 10–25 percent of patients. This condition impairs voluntary movement, is untreat-
able, and when the medication is stopped, persists in two-thirds of the affected
patients.
It can also be argued that the potential benefits of involuntary treatment cannot
be defined objectively. Most psychiatrists think that people such as Brown benefit
from living on medication and by losing their inner voices. But aren’t benefit and
harm, above the level of basic needs, defined by each person’s own self-concept
and life plans? As three lawyers write:
When faced with an obviously aberrant person, we know, or we think we know,
that he would be “happier” if he were as we are. We believe that no one would
want to be a misfit in society. From the very best of motives, then, we wish to fix
him. It is difficult to deal with this feeling since it rests on the unverifiable assump-
tion that the aberrant person, if he saw himself as we see him, would choose to be
different than he is. But since he cannot be as we, and we cannot be as he, there
is simply no way to judge the predicate for the assertion.30
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 311
Isn’t it a shaky application of paternalism to say that Joyce Brown had to be
treated so that she could obtain someone else’s idea of a benefit? Psychiatrists imply
that mentally ill patients suffer internal pain, but if that is so, why don’t all patients
want to get rid of it? Isn’t it illogical—isn’t it begging the question—for psychiatrists
to explain that patients don’t want to get rid of this pain because they’re crazy?
What makes us go round and round on this issue is that schizophrenia is a
disorder of thought. So some people with such disorders of thinking will in fact fail
to understand their obvious best interests.
Housing for the Mentally Ill as an Ethical Issue
Recently, the term “homeless” has been attacked by a new wave of critics as inap-
propriate for the wandering mentally ill; instead, “substance abusers who lack hous-
ing” has been substituted. Critics challenged the ACLU’s view that people like Joyce
Brown are primarily victims of a greedy or indifferent society that failed to provide
affordable housing; they say there is evidence that as many as 85 percent of pan-
handlers are alcoholics, substance abusers, or mentally ill—and that all of these
people need treatment.31 These new critics advocate mandatory treatment and
police intervention to prevent panhandling. They urge people not to give money to
beggars, saying that those who do give money are “enablers of addiction.”
Supervised group homes remain an elusive ideal, except in a few enlightened
states such as Vermont and New Hampshire. Whether we are discussing severely
physically disabled people like Larry McAfee, welfare reform, or the mentally ill
homeless, the best living facility for many people is a supervised group home. Living
in such a home is much better than being warehoused in a large institution or being
left to fend for oneself. Supervised group homes in safe neighborhoods are the
perfect compromise between institutionalization and independence.
Deinstitutionalization has continued. In 1993, in New York, 2,400 new group
home beds had been planned in preparation for the release of 1,000 more people
with mental illness from large institutions in 1994, but the number of new beds
was later cut to 800. When New York’s highest court ruled in 1993 that the city
must provide housing for homeless mentally ill patients discharged from city hos-
pitals, the city estimated that it would cost $300 million to do so and disputed the
ruling. Nine years later, a study by the New York Times exposed widespread failings
in the city’s adult homes for mentally ill people, “allowing some of its most vulner-
able citizens to be exploited in a system plagued by inept, wasteful and fraudulent
services.”32
Many cities emulated New York City’s mayor Rudolph Giuliani, who forced
homeless people off the streets in the 1990s and into city-funded shelters away from
tourists and the affluent. Cities such as Sacramento, Seattle, and Atlanta forced
homeless people to move out and did not build new shelters. After the recession
of 2007–2009, many of America’s largest financial institutions almost failed, saved
by a $700 billion bailout. The effects of this collapse are still being felt in the collapse
of public services for the poor, and housing for people with schizophrenia has been
especially hard hit.
When cities tried to build group homes, fights ensued. Residents on Earle Street
in Greenville, South Carolina, one of its oldest neighborhoods, sued in 1994 when
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312 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
charities tried to open a sixth group home there. In Alabama, Birmingham’s South-
side, Forest Park, and Avondale neighborhoods had too many group homes, while
surrounding, affluent suburbs had none. All around the country, certain neighbor-
hoods in each city became categorized as the preferred area for group homes, where
too many were built. Such identification made other neighborhoods passionately
resist having even one such home there, lest more follow.
In the twenty-first century, lack of housing remains a problem for mentally ill
homeless people, who are often also plagued by drugs, dysfunctional families, and
poverty.
Mass Shootings and the Mentally Ill
The shootings at Columbine and Aurora, Colorado, at Sandy Hook Elementary School
in Connecticut and of Representative Gabby Giffords and staff in Arizona by mentally
ill people with semiautomatic weapons have made Americans afraid of people with
schizophrenia. At the same time, one study in 2000 found that nearly half of “rampage
murders” were committed by mentally ill people.33 Another study found that the
number of state hospital beds for the mentally ill has declined, because of cuts to
funding, to a rate per capita comparable to the year 1850 in the United States.
ETHICAL ISSUES IN RESEARCH ON
PEOPLE WITH SCHIZOPHRENIA
Because it is a lifelong condition and of genetic/biological origin and because it
devastates patients and their families, much research occurs on people with schizo-
phrenia, and such research tries to either find a cure or reduce symptoms so that
such people can function. But such research, which can be very profitable for drug
companies, raises special ethical issues, which this last section explores.
Washout Period
In 1984, Claudia and Joe Friend thought that their 20-year-old son, Greg, would be
helped for his schizophrenia if they enrolled him in a research trial at the Maryland
Psychiatric Research Center (MPRC) in Catonsville, Maryland, run by the University
of Maryland.
At admission, he was disheveled, drooled constantly, and was incontinent. He
“sat in a praying position on the floor and said he’d seen God, that others could
read his mind, and that his name was being called over the television set.”34
At the heart of the experiment in Greg Friend’s case was a provision in this
federally funded study that required a washout period of four weeks to enable drugs
to clear from Greg’s blood, liver, and kidneys. Drug companies and psychiatric
researchers believe new drugs should be tested on fresh subjects, with systems not
contaminated by old drugs.
Adults with schizophrenia do not automatically lack the capacity to consent to
their own treatment. Indeed, Greg was asked to sign, and did sign with his parents,
a consent form mentioning such a washout period.
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 313
In Greg’s study and during its washout period, subjects did not stay at MPRC
but saw physicians periodically as outpatients. The consent form warned that their
old symptoms could recur during the overall study but did not warn of any specific
dangers during the washout period.
After four weeks without any previous antischizophrenic medication, Greg expe-
rienced nightmarish hallucinations and extreme feelings of self-loathing. He saw a
small child, thought, “I could kill him,” and to prevent himself from doing so (or to
punish himself for the thought), broke his own arm on the metal railing of his parents’
Columbia townhouse. Taking a huge amount of aspirin, he tried to kill himself.
In 1989, Greg Aller, an adult with schizophrenia, lived in California near his
parents and functioned well on medication, earning high grades in college and
working part-time. His parents, Robert and Gloria Aller, had helped make a docu-
mentary at UCLA Medical Center, explaining research on autistic children.
Impressed with the compassion they filmed, the Allers hoped that psychiatrists
would treat their son compassionately when they enrolled him in a study at UCLA.
The Allers believed that the consent form at UCLA misled them by downplay-
ing dangers of the study’s washout period. It misleadingly said that Greg could get
better, stay the same, or get worse, implying equal odds of each. In fact, as Robert
Aller later said, “The researchers did not reveal to us that in a previous trial, 92 per-
cent of patients got worse.”35 Nor did researchers reveal that the real purpose of
the study was, upon withdrawal of medication, to investigate the signs and symptoms
of a psychotic relapse.
After his medication was stopped in 1990, Greg’s mental health dramatically
declined. He became violent and his family feared him. The new medication did
not return him to his previous level of functioning, and worse, neither did resump-
tion of his previous medication. Because he had been in a study requiring a washout
period, Greg Aller was worse off than he had been before.
In 1991, the Allers warned UCLA officials that washout periods were dangerous
for people with schizophrenia. During that year, Tony Lamadrid, another adult
subject with schizophrenia in the same UCLA study, committed suicide during the
washout period by jumping off the engineering building at UCLA.
In 1993, Abigayle McIntyre, an adult with schizophrenia and daughter of phy-
sician Judith Vukov, entered a UCLA research study, because Vukov believed that
it would give her daughter the best treatment.36 Taken off of all her previous med-
ications for three weeks, Abigayle screamed and cried for hours. She was then given
Haldol, a standard antipsychotic drug, which gave her terrible headaches and dan-
gerously high blood pressure. After a month in this study while still in the protocol,
Abigayle killed herself by swallowing a large number of aspirin pills.
After Greg Aller’s experiences, Robert Aller and his wife joined with the par-
ents of Greg Friend, the Lamadrid family, and another family to form a small coa-
lition, publicizing the dangers of washout periods in studies on subjects with
schizophrenia.37
Schizophrenia
Schizophrenia stems from the Latin schizo (split) and phrenia (mind). As a psycholog-
ical disorder, the term signifies a disintegration of personality and a break or split
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314 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
from reality. It is commonly confused with having multiple personalities. According
to the National Institute of Mental Health (NIMH), in any given year, about 1 percent
of Americans over age 18, or over 2 million adults, have schizophrenia.38
Although schizophrenia is a serious mental disorder (it is responsible for half
of long-term patients in mental hospitals), modern drugs allow many people with
schizophrenia to lead productive lives and often in halfway homes (“halfway”
between a large state institution and a regular home, a house where a half-dozen
adults live independently with help of a live-in case worker).
The rule of fourths predicts long-term prognosis for people with schizophrenia:
One-fourth will get well with drugs and be stable; one-fourth will fare moderately
well on drugs and live on their own; another fourth will do well enough to live in
a halfway home under supervision; the final fourth will do poorly and will be
institutionalized.39
A more accurate phrase is “schizophrenic disorders,” which reflects the diver-
sity of symptoms that tend to be labeled under “schizophrenia.” These disorders
have two main divisions in causes and treatment. Type 1 (active) symptom pattern
involves thought disorders such as hallucinations and delusions. Type 2 (passive)
symptom pattern involves extreme social withdrawal and flat affect.
Biochemical imbalances seem to cause Type 1 patterns, which respond well to
antipsychotic medications. Type 2 patterns seem to be caused by structural defor-
mities in the brain and do not respond well to antipsychotic medications. A diag-
nosis of Type 1 schizophrenia disorder has a much better prognosis than a Type 2.
The core pathology at the heart of schizophrenia is a very disorganized thought
process and then hallucinations, in which victims see, hear, smell, feel, and taste
things and experience events that do not exist.
Most scientists today believe that schizophrenia stems entirely from biological
or genetic causes. Heredity is a major factor. In a large study of identical twins, if
one twin became schizophrenic, the other had a 50 percent chance of the same.40
Schizophrenia is not the same as schizoaffective disorder, which combines the
distortions of thought of schizophrenia with distortions of mood. Schizoaffective
disorder is a very severe mental illness with a poor prognosis.
Overall and to most people, schizophrenia seems like a mysterious and terrify-
ing disease. As such, it is poorly understood; people who suffer from it are often
wrongly seen as sicker or more dangerous than they are.
In fact, a small percentage of people diagnosed with schizophrenia completely
“recover,” lose their hallucinations, function normally for decades, and even enjoy
professional careers. Take Daniel Fisher: diagnosed in his mid-20s, Fisher had a
Ph.D. in biochemistry; two years after earning it, he spent four months in a psy-
chiatric hospital.41 With a supportive family (his father taught at Johns Hopkins
Medical School), he went on to medical school at George Washington University
and completed a residency in psychiatry at Harvard. Afterward, he had a long
career as a psychiatrist and as an advocate for psychiatric patients.
More common is the situation of mathematician John Nash, portrayed in the
Oscar-winning film, A Beautiful Mind. Late in his life, Nash recovered enough to
receive a Nobel Prize, attend the ceremony, and make a brief speech. (Like many
people with schizophrenia, Nash still hallucinated during the ceremony, but like
many functional people with schizophrenia, Nash knew he was hallucinating.)
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 315
Swiss psychiatrist Manfred Bleuler started to change the image of people with
schizophrenia in his landmark study published in 1972, where he interviewed 200
patients who had been diagnosed with schizophrenia 20 years ago. Manfred’s find-
ings contradicted the work of his own father Eugene, who had believed that schizo-
phrenia was an inexorable, incurable mental disease. Manfred discovered that
20 percent were no longer schizophrenic and 30 percent had substantially improved.
Rather than slipping inexorably into psychosis or catatonia, half got better.
In 1987, Yale psychologist Courtenay Harding followed 269 former patients from
Vermont’s state mental hospitals. She found that almost two-thirds were judged by
researchers to have either fully recovered or functioned well (although all still
needed medication and heard voices). Contrary to popular beliefs, some of these
former mental inmates, even while hearing voices, held down regular jobs. All in
all, “… the belief that recovery from schizophrenia occurs only occasionally is belied
by at least seven studies of patients who were followed by more than 20 years after
their discharge from mental hospitals. …”42 In short, most people with schizophre-
nia live more normal lives than is commonly believed.
Problems of Consent in Schizophrenia Research
Since the Nuremberg Code, ethical research has required the consent of subjects of
medical research. Adults with schizophrenia are not necessarily so impaired that
they cannot consent to participate.
On the other hand, such adults do suffer from a disorder of thought and judg-
ment. The authors of the influential 1978 Belmont Report considered such adults,
along with prisoners, children, and patients of mental institutions, too vulnerable
and needing special protections. Their mere consent was not sufficient justification
for their participation in research.
Adults with schizophrenia and their families suffer from four major problems
involving consent. First, their consent may be coerced because the physician or
institution asking for their consent may be their primary caretaker. If they decline
to participate, they may fear loss of sympathetic treatment. Second, if the physician
or institution is normally the primary caretaker, they may not understand that the
researcher may receive substantial payment for recruiting each subject. Third, they
may not appreciate the dangers of the washout period or getting a placebo when
they are off medications. Finally, as critic and University of Maryland at Baltimore
professor Adil Shamoo points out:
In withdrawal [of drug] studies, there usually is a small likelihood of great personal
benefit and a large likelihood of personal harm. This is one of the most difficult
research situations for potential subjects to evaluate, unlike high benefit/low risk
research that is easy to accept or low benefit/high risk research that is easy to
reject.43
For all these reasons, several commissions and alliances for mentally ill persons
support independent confirmations of the adequacy of consent for adults with
schizophrenia. This could be in the form of a psychiatrist independent of the
researchers, a consent auditor, or having such adults or members of their families
on Institutional Review Boards (IRBs) that review protocols.
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316 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
Moreover, consent only begins, and does not end, protection of such subjects.
Take challenge studies, where a drug is introduced under controlled circumstances
to research subjects in order to observe a hypothesized result.44 In such nonthera-
peutic challenge studies, subjects may be given drugs such as amphetamines,
L-dopa, or ketamine to induce psychosis. In such studies, only a very great benefit
to future subjects would justify inflicting this harm on subjects.
In the UCLA study with Greg Aller and others, Yale law professor Jay Katz
accused researchers of misleading subjects about the intentional creation of psy-
chotic episodes with placebos and washout periods and argued that “the subject –
patients’ consent was manipulated.”45 Katz believed the consent form should have
emphasized in bold letters that the study “WILL NOT HELP YOUR CONDITION.”
The form also stated that “all medications will be stopped” and that “they would
continue to receive regular care,” which is contradictory. Katz concluded, “What
transpired in this study is not unique to UCLA: it is symptomatic of the flawed
nature of current regulations and current practices protecting the human rights of
subjects.” To use different terms, this study violated both the autonomy of subjects
and the requirement not to harm them.
Moreover, washout periods and placebos also don’t necessarily guarantee that
a previous drug is completely gone from a patient’s system. That depends on
whether the drug enters the patient’s blood directly or indirectly via metabolites. If
the latter, researchers may not really know the decay curve for metabolites or how
long, if ever, it would take to create a perfectly drug-free state.
Lastly, given how poorly medical insurance covers care for schizophrenia and
how meager the resources are of most states for public psychiatry, we know that
most families desperately seek to admit their relative into, and give consent for, any
kind of public facility where normal care can be obtained at low cost. If the price
of admission is participation in research, many families are willing to pay.
Family Dilemmas
Caring for a relative with schizophrenia is no easy job and often traumatizes fam-
ilies. Indeed, some psychiatrists think of schizophrenia not as a disease of one
person but as a family illness. It certainly creates a crisis in many families.
Because some adults with schizophrenia can function normally on drugs, or be
returned to normal, families constantly seek better drugs when traditional drugs
fail to work or no longer work.
Support for families with a schizophrenic relative is less extensive than many
believe. Over 40 million Americans lack good medical insurance, and only superb
insurance policies provide full care for schizophrenia. When drugs or care, or both,
are offered for free, families may enroll their relative in the program both to save
money and in hopes of obtaining better medications.
The media and medical marketers create the impression of great pharmacolog-
ical success so that families may find it hard to believe that schizophrenia cannot
be cured. This may especially be true when the relative is in his or her 20s, with
his or her whole life ahead.
Families may also have unrealistic expectations of researchers. Already, 1 in 10
adults with schizophrenia will commit suicide. Can researchers really monitor
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 317
subjects 24 hours a day to prevent suicide? It would seem they can do so only if
subjects are locked up and monitored as inpatients, an expensive endeavor for
which few researchers are funded. Realistically, new protocols for drugs may need
to take chances with outpatient subjects to save money and also to maximize free-
dom and autonomy of subjects.
When a subject commits suicide, everyone may accuse researchers of having
evil motives or of not caring. When a 25-year-old son or daughter commits suicide,
few parents will see it as an unavoidable, natural consequence of schizophrenia, but
in some cases, that is just what it is.
Critics rebut this argument by saying that, on medication and under supervi-
sion, the rate of suicide is much lower than 1 in 10. Moreover, as for monitoring
subjects, fragile people with schizophrenia do in fact need special monitoring, and
if they are going to be guinea pigs in a research study, why shouldn’t they be care-
fully monitored? They question whether such studies should ever be done on an
outpatient basis.
Drug Companies and Research on Schizophrenia
Today, pharmaceutical companies fund most research into drugs and devices; they
do not fund independent peer review of their new drugs and do not publicize bad
results. By indirectly paying physicians to test new drugs and by financially encour-
aging physicians to recruit patients for experiments, drug companies may influence
physicians to ignore the best interests of their patients.
In 1998, a study by the Department of Health and Human Services concluded
that IRBs could no longer handle the job of protecting subjects from abuses in
medical experimentation.46 It found that IRBs were underfunded and overworked,
and that the volume of work expected of volunteers could not be accurately and
conscientiously performed. Another study in 2002 by the Institute of Medicine
reached similar conclusions.47
Several scandals erupted in the 1990s wherein a few physicians and their asso-
ciates appeared to have taken millions of dollars from drug companies for dubious
research.48 Some doctors in Georgia allegedly made at least $4 million over seven
years from aggressively soliciting people with schizophrenia for drug trials; they
made another $6 million over the same period from testing other drugs.49
In 1994, Susan Endersbe, a 41-year-old woman with schizophrenia and suicidal
impulses, after a two-week washout period, was put on the experimental drug
Sertindole despite contraindications for suicidal impulses. Abbott Laboratories,
which paid a psychiatrist to test Sertindole on patients with schizophrenia, enrolled
her in the study.50 As nurses’ notes attest, Endersbe repeatedly told staff that she
would kill herself, and after three days on Sertindole, she did just that by leaping
to her death off a bridge into the Mississippi River.
In the early 1990s, researchers at MPRC searched for a chemical cause of schizo-
phrenia. Creating a reproducible medical problem, such as a head injury, is often
the most important first step in developing a cure for the problem. They hit upon
ketamine, a chemical cousin of the street drug PCP or phencyclidine, an anesthetic
used on large mammals by veterinarians. On the streets, it is also called “Special
K” and a “date rape” or “predator” drug. Humans who were anesthetized with
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318 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
ketamine often awakened temporarily psychotic and sometimes reported terrible
nightmares. Ketamine also causes hallucinations, short-term amnesia, and dissoci-
ation, a feeling of the mind’s separation from the body.51
Researchers hypothesized that ketamine might reliably produce schizophrenic
psychosis and become a benchmark for studying such psychosis. If it could be
shown that ketamine played a role in producing schizophrenia-like states, the next
step would be to discover how to eliminate the body’s ketamine-like compounds.
Nevertheless, giving ketamine to a normal person to produce schizophrenia, or
giving ketamine to a person with schizophrenia who was doing fine, unquestionably
harms that person; subjects would be worse off after taking ketamine than before
taking it. In the language of medical research, giving patients such drugs is a non-
therapeutic experiment.
At MPRC, several psychiatrists received substantial amounts of money from the
federal government to study schizophrenia. Institutions employing Drs. Adrienne
Lahti and Carol Tamminga received over half a million dollars to see if injecting
people with schizophrenia with ketamine worsened their conditions.52 In the study
of the drug for which Greg Friend was enrolled, MPRC received $600,000.
It is also true that researchers tend to see the glass as half full, that is, ambig-
uous results are seen to favor their own research. In the ketamine study, Dr. Tamminga
downplayed harm to subjects. When asked by Alto Charo, a member of President
Clinton’s Bioethics Commission, “Why does anybody say yes to enrolling in your
[ketamine] research?” Tamminga looked startled and replied, “I’ve never really
thought about it.”53 Charo’s fellow commissioners did think about it and concluded
that inducing psychosis in mentally fragile schizophrenic patients was not some-
thing to be done without great moral justification.
Researchers Defend Themselves
Many psychiatric researchers believe that placebo studies of new drugs to fight
mental disorders are necessary and appropriate. They defend themselves on utili-
tarian grounds. From a utilitarian viewpoint, each patient may not get the best drug,
but on the whole, randomized clinical trials with washout periods and placebos best
prove which new drugs work. For example, because researchers used placebo –
controlled studies on past patients, we now have drugs for schizophrenia that do
not cause tardive dyskinesia (uncontrollable spasms, often irreversible).
Paul Appelbaum, a professor of psychiatry formerly at the University of Mas-
sachusetts and now at Columbia Medical School, offers a modest defense of con-
tinuing to research new drugs for schizophrenia.54 First, the main lobby for persons
with mental disorders, the National Alliance on Mental Illness (NAMI), does not
favor cessation of all research. Second, almost all patients on medication will at
some time experience a relapse, showing the need for better drugs. Third, it has
been known for many years that some schizophrenic patients can have their med-
ication discontinued without experiencing relapse for a substantial period of time.
Fourth, washout periods provide all subjects in drug trials with the same baseline
and minimize adverse drug interactions with maintenance drugs.
He also argues that compromise is possible: Patients with a high risk of severe
relapse can be screened out, and evidence suggests that tapering off drugs, rather
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 319
than abrupt withdrawal, minimizes severe episodes. Furthermore, subjects can be
closely monitored for relapse by having such studies only done on inpatients.
Finally, consent can be required not only of the subject but also of the “person who
is responsible for the health care of the subject.”
On a more serious topic, although inducing psychosis with ketamine in persons
with schizophrenia would seem to most people to harm such subjects, some
researchers defend the practice. Trey Sunderland, a Yale University psychiatrist who
was chief of geriatric psychiatry at the NIMH and chairman of its IRB, said he
believes that use of ketamine in such so-called challenge studies could “yield answers
for some of the most devastating mental illnesses.”55
Critics of such research speculate that each time a subject with schizophrenia has
a psychotic episode, he or she gets worse, almost as if toxic chemicals build up in the
brain, causing structural damage to occur. This so-called kindling theory of psychosis
sees neural pathways as getting hotter and hotter until “combustion” occurs.
Dr. Sunderland disputes the kindling theory, saying there is no evidence that
ketamine causes flashbacks in patients undergoing surgery and that no subjects at
the NIMH have complained of any damage from such studies.56 He continues, “This
is a medicine which is given under close scrutiny for a short-term basis. There is
no repeated long-term exposure.” Moreover, ketamine’s street use is “not an issue
in these studies” and not mentioned in forms providing informed consent.
Finally, Dr. Sunderland defended the form providing informed consent in these
studies. “It does mention you might get an altered mood, hallucinations. … The
main side effects of the medication are listed in black and white.”57
Harm to Subjects and the Kantian Ideal of Patient Care
The unusual aspect of the two main studies discussed in this section (washout and
ketamine studies) is that researchers understood that bad things would happen to sub-
jects, intended for this to happen, and did not really inform subjects or their families
about such consequences. Psychiatrist Appelbaum says that while only 16 percent of
patients maintained on medication will relapse, when medication is withdrawn, nearly
55 percent will.58 Moreover, “abrupt discontinuation of medication induces a threefold
greater risk of relapse than gradual discontinuation over a period of weeks to months.”
Such protocols violate the Declaration of Helsinki, which states that when an
effective drug exists, a new drug must be compared to the old effective drug, not
a placebo.
The study inducing psychosis with ketamine is unusual in the recent history of
American medicine. Even the Tuskegee Study did not inflict a disease on its patients
but just observed a disease that could have been treated.
The protocol violates the ideal of patient care in Kantian ethics of treating each
patient as a member of the “kingdom of ends.” It also violates the traditional rule of
medical ethics, “First, do no harm,” also known as the principle of nonmaleficence.
Structural Critiques of Modern Psychiatric Research
Several critics, such as the Alliance for Human Research Protection (AHRP) and
Public Citizen, have battled for the rights of patient-subjects in modern psychiatric
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320 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
research, focusing on problems caused by (1) research that seeks profits for
stock -financed drug companies, (2) conflicts of interest in those who receive pay-
ments for research and in those who regulate such research, and (3) lack of protec-
tion for vulnerable schizophrenic subjects on whom the research is done.59
In some drug studies, psychiatrists who recruited patients to studies where
drugs were tested for schizophrenia and Alzheimer’s received as much as $30,000
per patient.60 Former deputy editor of the New England Journal of Medicine, Marcia
Angell charged (in her last editorial before leaving this periodical) that corporate
influence in academic medicine now determines what research is done, by what
methods, by whom, and which results are reported or suppressed.61
One of the chief complaints of critics is that new drugs are commonly tested on
younger, healthier subjects than those likely to be prescribed the new drug, thus min-
imizing known side effects. Older, sicker people who eventually are prescribed the
new drugs will likely experience worse symptoms, especially in combination with other
drugs they’re taking.
Of relevance to Greg Friend’s case, critics such as Vera Sharav of AHRP claim that
washout periods have a hidden effect desired by drug companies: Washout periods make
people with schizophrenia sicker and thus exaggerate the benefit of any new drug begun later.
Remember that in clinical practice, patients do not undergo washout periods in switch-
ing from one drug to another, so the benefit is unlikely to be matched with real patients.62
In 1998, the Boston Globe found that three main drugs for schizophrenia were
tested during the 1990s: Zyprexa (olanzapine), Risperdal (risperidone), and Seroquel
(quetiapine). Serlect (sertindole) was also tested but withdrawn after questions arose
about its safety in a meeting of Federal Drug Administration (FDA) advisory com-
mittee. It discovered that 12,176 patients from the United States and abroad were
tested in trials for all four drugs, with 88 deaths, including 38 suicides, for an overall
death rate of 1 of every 138 volunteers.
Psychiatric researchers rebut that some percentage of people with schizophre-
nia will commit suicide, regardless of whether they are in a drug study or not. They
emphasize that patients in such clinical trials for schizophrenia will likely be sicker
than patients not in such trials.
Critics concede these points, but note that the rate of suicide of patients with
schizophrenia in clinical trials is two to five times higher than the norm for people
with schizophrenia, which is 2–5 deaths per 1,000. Moreover, they say, people with
very severe cases of schizophrenia are almost certainly too sick to participate in
such trials without being inpatients and close monitoring.
Finally, it is startling that no objective standard exists of when a new drug
achieves a benefit that exceeds that of a placebo to officially classify it as therapeu-
tic. Researchers and regulatory agencies have wide latitude in judging exactly what
improvement counts as a benefit to patients.
The CATIE Study
In recent decades, new, expensive drugs for schizophrenia described in this section
(Zyprexa, Seroquel, Risperdal, and Geodon) gained FDA approval, based on short-
term studies financed by drug companies comparing the new drug to a placebo. A
U.S. government-financed study in 2005, Clinical Antipsychotic Trials of Intervention
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Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 321
Effectiveness (CATIE), followed 1,493 schizophrenia patients randomly assigned to
take one of the five drugs; in CATIE, neither doctor nor patient knew which drug
was being tested. CATIE discovered that the five new drugs were no more effective
or no safer than perphenazine, an older generic drug.63 None of the new drugs had
been systematically compared to one another in a long-term trial designed to decide
which to try first.
Zyprexa, with sales of $2.4 billion in America in 2004, costs about $12 a day,
whereas perphenazine costs about $1. Switching people with schizophrenia on Med-
icaid back to perphenazine might save states and the federal government tens of mil-
lions of dollars, because most people with schizophrenia must take such drugs for life.
FURTHER READING
Alice Baum and Donald Burnes, A Nation in Denial: The Truth about Homelessness, Boulder,
CO: Westview, 1993.
Paul Chodoff, “The Case for Involuntary Hospitalization of the Mentally Ill,” American Journal
of Psychiatry, vol. 133, no. 5, May 1976, pp. 496–501.
Gordon DuVal, “Ethics in Psychiatric Research: Study Design Issues,” Canadian Journal of
Psychiatry, vol. 49, no. 1, January 2004, pp. 55–59.
Saul Feldman, “Out of the Hospitals, onto the Streets: The Overselling of Benevolence,”
Hastings Center Report, vol. 13, no. 3, June 1983, pp. 75–96.
J. Livermore, C. Malmquist, and P. Meehl, “On the Justification for Civil Commitment,”
University of Pennsylvania Law Review, vol. 117, November 1968, pp. 5–7.
Adil E. Shamoo, Ethics in Neurobiological Research with Human Subjects: The Baltimore Confer-
ence on Ethics, Amsterdam, Holland: Gordon & Breach Publishers, 1997.
Robert Whitaker, Mad in America, New York: Perseus, 2003.
Robert Zipursely, “Ethical Issues in Schizophrenia Research, Current Science, vol. 1, 1999,
pp. 13–19.
Declaration of Helsinki. See World Medical Association website http://www.wma.net/en/
30publications/10policies/b3/
National Bioethics Advisory Commission, Research Involving Persons with Mental Disorders
That May Affect Decision-Making Capacity, Rockville, MD, 1998.
DISCUSSION QUESTIONS
1. “The easiest way to become homeless in America is to lose your job, lose your
medical insurance, and be unable to afford housing. It can happen to anyone.”
Is this true, or do people usually screw up, say, by using drugs, when they lose
their jobs and places of living?
2. “When faced with an aberrant person, we think he would be happier if he were
as we are. … But since he cannot be as we, and we cannot be as he, there is
simply no way to judge the predicate for the assertion.”64 This “problem of other
minds” in psychopathology has its limits. Shouldn’t some crazy people be
helped for their own good?
3. Are most problems of psychotherapy problems of values, as Szsaz says, about
which psychiatrists have no special training or insight, and for having different
values should people be involuntarily committed?
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http://www.wma.net/en/
322 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
4. During his administration as mayor of New York City, Rudy Giuliani used
heavy-handed police tactics to rid Times Square and other tourist areas of Man-
hattan of homeless people. Was he justified in doing so by the greater good?
Today, you see maybe 1 percent of the number of homeless people that one
saw in Joyce Brown’s time on the streets.
5. Has destitutionalization worked for the best interests of people with mental ill-
ness, especially as community centers never came about?
6. How are washout periods in research on people with schizophrenia not always
in the patients’ best interests?
7. Why are drugs for people with schizophrenia so profitable for drug companies?
NOTES
1. New York Times, November 6, 1987, p. B1.
2. Ibid.
3. New York Times, November 13, 1987, p. B21.
4. Ibid.
5. Ibid., p. A1.
6. Ibid.
7. “Brown versus Koch,” 60 Minutes, interview with Ed Bradley, January 24, 1988.
8. “Court Backs Treatment of Woman Held under Koch Plan,” New York Times, December 19, 1987, p. A1.
9. “Brown versus Koch,” 60 Minutes.
10. “Brown versus Koch,” 60 Minutes.
11. New York Times, January 20, 1988, p. A16.
12. “Participants Laud Drug Treatment Program,” New York Daily News, May 2, 2000.
13. Julian Jaynes, The Origin of Consciousness and the Breakdown of the Bicameral Mind, Houghton Miff-
lin, Boston, 1976.
14. Thomas Szasz, “Involuntary Mental Hospitalization: A Crime against Humanity,” in Ideology and
Insanity, Doubleday, New York, 1970.
15. D. L. Rosenhan, “On Being Sane in Insane Places,” Science 179 (1973), pp. 250–258.
16. O’Connor v. Donaldson, 422 U.S. 563. 95 S. Ct. 2486, June 26, 1975.
17. John Petrilia, “Mental Health Therapies,” BioLaw, University Publications of America, Frederick,
MD, 1986, pp. 177–215.
18. Quoted in Charles Krauthammer, “How to Save the Homeless Mentally Ill,” New Republic, February
8, 1988, p. 24.
19. Saul Feldman, “Out of the Hospitals, into the Streets: The Overselling of Benevolence,” Hastings
Center Report 13, no. 3 (June 1983), pp. 5–7.
20. C. Dugger, “Judge Orders Homeless Man Hospitalized,” New York Times, December 23, 1992, p. B1.
21. Mary T. Zdanowicz, “Random Violence of Subway Pushings Can be Prevented,” Treatment Advocacy
Center, April 29, 1999.
22. Treatment Advocacy Center, “State Standards for Assisted Treatment: State by State Chart,” New
York Times, December 12, 2004; http://www.treatmentadvocacycenter.org/storage/documents/
Standards — The — Text — June — 2011 .
23. E. Rosenthal, “Who Will Turn Violent? Hospitals Have to Guess,” New York Times, April 7, 1993, p. A1.
24. Tarasoff v. Regents of University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 California Reporter
14 (Cal. 1976).
25. Virginia Abernethy, “Compassion, Control, and Decisions about Competence,” American Journal of
Psychiatry 141, no. 1 (1984), pp. 53–58.
26. Ibid.
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http://www.treatmentadvocacycenter.org/storage/documents/
Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 323
27. Robert Levy and Robert Gould, “Psychiatrists as Puppets of Koch’s Round-Up,” New York Times,
November 27, 1987.
28. Paul Chodoff, “The Case for Involuntary Hospitalization of the Mentally Ill,” American Journal of
Psychiatry 133, no. 5 (May 1976), 496–501.
29. Ellen Goodman, “Before They Die with Their Rights On,” Washington Post, November 21, 1987.
30. J. Livermore, C. Malmquist, and P. Meehl, “On the Justification of Civil Commitment,” University
of Pennsylvania Law Review 117 (November 1968), pp. 75–96.
31. Alice Baum and Donald Burnes, A Nation in Denial: The Truth about Homelessness, Westview, Boulder,
CO, 1993.
32. Clifford J. Ivy, “The State Is Failing the Mentally Ill in Adult Homes, Pataki Administration Study
Says,” New York Times, September 15, 2002, p. 21.
33. David Kopel, “Guns, Mental Illness, and Newtown,” Wall Street Journal, December 18, 2012, p. A17.
34. The case of Greg Friend, as that of Robert Aller, is taken in part from public testimony before a
government commission by the parents of each. The Friend case was also described in a hometown
paper of the Friends: Meredith Wadman, “Research Roulette: Are the Maryland Psychiatric Research
Center’s Schizophrenia Studies Harming the Patients?” (Baltimore)CityPaper, June 24, 1998. Finally,
I am grateful to the Friend family for giving consent to use their case in this chapter.
35. Nell Boyce, “Informed Consent Not Always the Whole Truth,” New Scientist, June 20, 1998.
36. Robert Whitaker, “Lure of Riches Fuels Testing,” Boston Globe, November 17, 1998, p. A1.
37. www.ahrp.org/tesitmonypresentations/NBAC1997/aller.html.
38. National Institute of Mental Health, Mental Disorders in America, Bethesda, MD, 2001.
39. John W. Santrock, “Causes of Schizophrenia,” Psychology, 7th ed., McGraw-Hill, New York, 2004, p. 548.
40. M. T. Tsuang, W. S. Stone, and S. V. Faraone, “Genes, Environment, and Schizophrenia,” supple-
ment, Journal of Psychiatry 40, (2001), pp. 18–24.
41. Sandra Boodman, “John Nash’s Genius Is Extraordinary, Recovering from Schizophrenia Is Any-
thing But.” Washington Post, February 12, 2002.
42. Sandra Boodman, “John Nash’s Genius.”
43. Adil E. Shamoo and Timothy J. Keay, “Ethical Concerns about Relapse Studies,” Cambridge Quarterly
of Healthcare Ethics 5 (1996), p. 382.
44. Gordon DuVal, “Ethics in Psychiatric Research: Study Design Issues,” Canadian Journal of Psychiatry
49, no. 1 (January 2004), pp. 55–59.
45. Jay Katz, “Human Experimentation and Human Rights,” Saint Louis University Law Journal 38, no. 7
(Fall 1993).
46. Rick Weiss, “Research Volunteers Unwittingly at Risk,” Washington Post, August 1, 1998, p. A1. See
also this article from the online journal Target Health: “Most IRBs, including commercial IRBs, are
very demanding. Westminster IRB, a private IRB used by some clients of Target Health, recently
required changes to informed consent three times. Unfortunately, problems can occur in clinical
trials. It is, therefore, primarily up to the principal investigator, together with his or her staff, and
the sponsoring company to assure patient safety and to provide adequate informed consent as to
the risks and benefits of participation in a clinical trial.
Federal investigators told a congressional panel this week that the system for policing testing of
new drugs and medical devices needed changes to protect the interests of patients participating in clin-
ical trials. In a series of reports made public at a hearing before a congressional subcommittee, the
inspector general of DHHS described how excessive workloads had overwhelmed local review boards that
oversee clinical trials and left them unable to insure that patients were not exposed to unsafe practices.
The hearing before the human resources subcommittee of the House Committee on Govern-
ment Reform and Oversight reflected dramatic changes in scientific research. Once the domain of
federally funded university laboratories largely working alone, medical testing has expanded in
amount and complexity in recent years. Today, commercial sponsors, like drug companies, finance
a growing share of studies, often at multiple sites.
A result has been more studies of greater complexity that must be approved by IRBs. These
boards, required by federal regulations since 1974, were historically tied to medical schools and
universities. But their number has grown and now includes independent and for-profit boards. In
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www.ahrp.org/tesitmonypresentations/NBAC1997/aller.html
324 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia
the reports, the inspector general recommended improving the education of clinical investigators
and members of review boards; increasing the boards’ accountability and ability to decide which
studies merit closer scrutiny; and changing the federal oversight process so that agencies specifically
examine how well the boards are protecting human test subjects.
The reports also recommend giving the review boards greater responsibility in verifying infor-
mation provided by clinical investigators. It was stressed, however, that the review and oversight
system for clinical testing did not have the resources needed to strengthen protections. For example,
one of the two federal groups charged with oversight of research risks in testing has one full-time
investigator to review potential problems in clinical trials. Some said that more bureaucratic duties
and criticism were making it increasingly difficult to find people to work on the review boards,
which are voluntary.” From Target Health, June 14, 1998, http://www.targethealth.com/.
47. Institute of Medicine, Responsible Research: A Systems Approach to Protecting Research Participants,
National Academy Press, Washington, D.C., 2002.
48. For psychiatrists who abused patients in psychiatric research on schizophrenic patients, see Whita-
ker, “Lure of Riches Fuels Testing.”; for another story about abuse of subjects and fraud in medical
research, see Douglas M. Birch and Gary Cohn, “How a Cancer Drug Trial Ended in Betrayal,”
Baltimore Sun, June 24, 2001.
49. Steve Stecklow and Laura Johannes, “Drug Makers Relied on Clinical Researchers Who Now Await
Trial,” Wall Street Journal, August 15, 1997, p. A1.
50. Whitaker, “Lure of Riches Fuels Testing.”
51. “Ketamine: A Fact Sheet,” National Clearinghouse for Alcohol and Drug Information, P.O. Box
2345, Rockville, MD 20847-2345, www.health.org/nongovpubs/ketamine/.
52. A. C. Lahti, B. Koffel, D. LaPorte, and C. A. Tamminga, “Subanesthetic Doses of Ketamine Stimu-
late Psychosis in Schizophrenia,” Neuropsychopharmacology 13 (1995), pp. 9–19; D. J. LaPorte, A. C.
Lahti, B. Koffel, and C. A. Tamminga, “The Effects of Ketamine on Memory and Other Cognitive
Functions in Schizophrenic Patients,” Journal of Psychiatric Research 30 (1996), pp. 321–330; A. C.
Lahti, M. A. Weiler, P. K. Corey, R. A. Lahti, A. Carlsson, and C. A. Tamminga, “Antipsychotic
Properties of the Partial Dopamine Agonist (-)-3PPP in Schizophrenia,” Biological Psychiatry 43
(1998), pp. 2–11; H. H. Holcomb, A. C. Lahti, D. R. Medoff, L. W. Chen, M. A. Weiler, and C. A.
Tamminga, “Serial Regional Cerebral Blood Flow Measures Demonstrate Pharmacodynamic Ket-
amine Effects,” submitted; G. Thaker, M. Moran, A. C. Lahti, and C. A. Tamminga, “Psychiatric
Morbidity in Research Volunteers, Archives of General Psychiatry 47 (1990), p. 980; G. Thaker,
H. Adami, M. Moran, A. C. Lahti, and S. Cassady, “Psychiatric Illnesses in Families of Subjects
with Schizophrenia—Spectrum Personality Disorder: High Morbidity Risks for Unspecified Func-
tional Psychosis and Schizophrenia,” American Journal of Psychiatry 150 (1993), pp. 66–71; D. J.
LaPorte, A. C. Lahti, P. K. Corey, and C. A. Tamminga, “Ketamine Fails to Block Memory Stage
and Retrieval When Administered Following Stimulus Presentation,” submitted.
53. Meredith Wadman, “Research Roulette,” p. 12.
54. Paul Appelbaum, “Drug-Free Research in Schizophrenia: An Overview of the Controversy,” Hastings
Center Report 18, no. 1 (January 1996), pp. 1–5.
55. Robert Whitaker, “Drug Tested without Disclosure,” Boston Globe, December 31, 1998.
56. Ibid.
57. Ibid.
58. Appelbaum, “Drug-Free Research in Schizophrenia,” p. 4.
59. Alliance for Protection from Research Risks, http://www.ahrp.org/.
60. Stecklow and Johannes, “Drug Makers Relied on Chemical Researchers Who Now Await Trial.”
61. Marcia Angell, “Is Academic Medicine for Sale,” New England Journal of Medicine 342 (2000),
pp. 1516–1518.
62. Vera Sharav, “Conflicts of Interest,” presentation at the Clinical Investigation Symposium, U.S.
Army Medical Department and Henry Jackson Foundation for the Advancement of Military Med-
icine, May 5–7, 2002.
63. J. A. Lieberman, “Effectiveness of Antipsychotic Drugs in Patients with Chronic Schizophrenia,”
New England Journal of Medicine 353 (September 22, 2005), pp. 1209–1223.
64. Livermore, Malmquist, and Meehl, “On the Justification of Civil Commitment,” p. 75.
pen07945_ch14_299-324.indd 324 9/8/16 9:52 AM
http://www.targethealth.com/
www.health.org/nongovpubs/ketamine/
This chapter discusses two large themes: (1) is it wise to test in advance for genetic
diseases and (2) can at-risk people do anything to avoid genetic diseases? It focuses
on two strong women, Angelina Jolie and Nancy Wexler, and their decisions to take
or not take presymptomatic tests. It discusses such testing for Huntington’s disease,
breast and ovarian cancer, Type 2 diabetes, and Alzheimer’s disease. Finally, it dis-
cusses clustered, regularly interspaced, short, palindromic repeat (CRISPR), a poten-
tially revolutionary new, easy technique for treating genetic disease.
CASE 1: ANGELINA JOLIE AND
GENETIC TESTING FOR CANCER
In 2013, movie star Angelina Jolie wrote an op-ed in the New York Times.1 For a decade,
her mother, Marcheline Bertrand, had fought both breast and ovarian cancer and died
of it at age 56. Bertrand’s own mother had died of ovarian cancer at age 45.
Jolie wrote that she paid $3,000 for presymptomatic tests for analysis of BRCA1
and BRCA2 genes, which have lethal variants that carry an 87 percent risk of breast
cancer and a 40 percent risk of ovarian cancer. Her tests came back positive for the
bad variant or, as she put it, the “faulty” gene.
Given how her mother died, and given her results, Jolie decided at age 37 to have
a preventive double mastectomy. Three months after the operation, she went public
and caused a sensation. Actor Brad Pitt, her partner, supported her decision.
She wrote that, after the mastectomy, her risk of developing breast cancer had
dropped from 87 percent to under 5 percent.
In 1990, Marie-Claire King discovered a mutation in a single gene, BRCA1
(BReast CAncer1), causing one form of breast cancer and ovarian cancer. In 1995,
Alan Ashworth discovered another variant in another gene, BRCA2. In 2002,
C H A P T E R 1 5
Ethical Issues in Pre-Symptomatic
Testing for Genetic Disease:
Nancy Wexler, Angelina Jolie,
Diabetes and Alzheimer’s
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326 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
researchers discovered a third gene, CHEK2. Mutations in any of these genes can
cause breast cancer.
As said, women (and some men) in families expressing mutations in these genes
run an 80 percent risk or higher of developing breast cancer, compared to a 9 percent
risk for other women. Both BRCA1 and BRCA2 are autosomal dominant genes, meaning
that if the women live long enough, they carry a high chance of getting breast cancer.
Is most breast cancer caused by one gene? No. Indeed, 95 percent of breast
cancer is not caused by a single gene.
But Angelina Jolie was at risk for the 5 percent that is caused by a mutation in
BRCA1/BRCA2, which is more prevalent among Ashkenazi Jews and families with
a history of breast/ovarian cancer.
The same mutation also put Jolie at a 50 percent risk of ovarian cancer, a very
lethal disease, so Jolie planned to have her ovaries removed before she turned 40,
after which she will likely experience early menopause.2
BACKGROUND: BASIC GENETICS
The gene is the basic unit of heredity. Packed inside each of the 46 chromosomes
in humans is a complicated strand of interwoven DNA, the famous double helix.
The number of genes varies on each chromosome.
The Human Genome Project, one of the greatest projects in the history of science,
began in 1993, cost $3 billion, finished in 2003, and mapped all the human genes.
Knowing which parts of DNA are genes, and where they are, begins genetic
knowledge. In the next steps, scientists must identify what genes do, how they interact
with other genes, and through which mediating proteins. Genetic diseases stem from
harmful variants in standard genes, such as Angelina Jolie’s variant of BRCA1.
Varying environmental inputs determine how genes express themselves. Expo-
sure of the fetus to drugs, nutrition in childhood, and use of tobacco affect how
genes control bodily characteristics. This is called the norm of reaction.3
Genetic diseases are inherited disorders. Some genetic diseases are caused by a
dominant mutation, for example, Huntington’s disease, where just one copy of a
gene causes a disease. However, most of us carry recessive forms of genes, but we
do not develop genetic disease. That is, we are homozygous recessive; heterozygotes
have a dissimilar pair of genes for an inherited disease and do not normally expe-
rience a disease but can pass the gene for it to their offspring. Heterozygotes of
autosomal dominant traits develop the disease because only one copy of the dom-
inant variant of the gene causes the disease. If two parents who are heterozygous
for a disease both confer the gene for the disorder to an offspring, that person has
a 75 percent chance of developing the autosomal dominant disease—as either a
homozygous dominant or heterozygous individual.
CASE 2: NANCY WEXLER AND HUNTINGTON’S DISEASE
After a 10-year deterioration and catatonia, clinical psychologist Nancy Wexler’s
mother died of Huntington’s disease, a fatal neurodegenerative disease. Because the
Huntington’s gene is dominant, Nancy and her sister Alice each had a 50 percent
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 327
risk of inheriting the disease. Because the average age of onset is 36, victims often
have children before learning they are affected.
In this progressive disease, neurons in the caudate nuclei region rapidly shed.
Although age of onset varies, the gene is completely penetrant by age 65.
Huntington’s progresses through several stages (about five years each). First
comes loss of muscular coordination and changes in personality, making victims
angry, hostile, depressed, and sexually promiscuous. Next comes slurred speech,
distorted facial expressions, constant muscular jerkiness, and staggering and falling.
The third stage brings incontinence, dementia, and dependence on others, usually
in an institution. In the last stage, victims are vegetative.
At present, 25,000 Americans have Huntington’s, and about 100,000 Americans
have an afflicted parent. Most victims are white. People at risk of Huntington’s
constantly wonder if each stumble augurs onset of the disease.
Unlike others at risk for genetic disease, who remain fatalistic about their risk,
Wexler helped both to discover the gene for Huntington’s and to develop a predic-
tive test for it. Around 1800, a European sailor with Huntington’s jumped off a ship
around Lake Maracaibo in Venezuela. He had 14 children, and because families
there were large, by 1981 he had 3,000 descendants. Of these, 100 had Huntington’s
and another 1,100 were at risk. In 1981, Wexler led an expedition to obtain blood
samples from these descendants to test them for a genetic marker for Huntington’s.
In 1983, Wexler and coresearcher James Gusella found such a marker.
In 1987, although the actual gene had not yet been discovered, Gusella devel-
oped a linkage test for Huntington’s, meaning he could test for a batch of genes that
tended to be inherited (or “linked”) together. The linkage test allowed people such
as Wexler to know their risk, for example, 5 percent versus 80 percent.
In 1986, Nancy Wexler taught as a professor of clinical neuropsychology at
Columbia University and often predicted that when the test became available, she
would take it. Later, she changed her mind, deciding not to take the test.
The implications of her decision stunned people. She had been a leading advo-
cate for testing and had decided at the last minute not to test. She had spent a
decade developing the very test she now refused to take. She was a clinical psy-
chologist who should have known her own heart.
Indeed, not only did Wexler not take the test, but she also became an advocate
of not testing: “What are you going to do if you’re positive? Spend the rest of your
life waiting to be a patient?” To people who wanted to be tested so that they could
decide to go to law school, she said, “Go to law school! Develop your mind! Get on
with your life!”4
Over the next decade, other researchers discovered single genes for muscular
dystrophy, cystic fibrosis, neurofibromatosis (“elephant man” disease), colon cancer,
ataxia, and sickle-cell anemia. In 1993, six laboratories discovered the exact location
of the Huntington’s gene.5 Now at-risk people such as Wexler could directly take a
test for it.
By then, Nancy Wexler had become even more convinced that people should
not take the test. In 2008, at age 63, she led the successful fight to get the Federal
Drug Administration (FDA) to approve tetrabenazine, the first drug that can ame-
liorate Huntington’s symptoms.6 In 2016, at age 71, she and her sister Alice still
actively spoke on Huntington’s and presumably did not inherit the gene.
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328 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
THE EUGENICS MOVEMENT
The eugenics movement (or “Eugenics”) flourished from 1905 to 1935 and hoped to
improve hereditary characteristics through voluntary, selective breeding. In the late
1880s, Charles Darwin’s cousin, Francis Galton, coined the term “eugenics.”
By “survival of the fittest,” Darwin meant “best adapted,” so “fit” referred to
the adaptation between an organism and its environment—in other words, how well
adapted the organism is to reproduce and pass on its genes to its offspring.
Unfortunately, social Darwinists mistakenly saw evolution in terms of competition
among social groups. Elitist, white social Darwinists believed that their social advan-
tages stemmed from their alleged biological superiority over Africans and Asians.
Social Darwinism was more ideology than fact-based. It overlooked the vast
numbers of organisms involved in attempts to survive, the enormous length of time
over which these attempts evolve, and the ongoing role of adaptive mutations.
Eugenics flourished around the globe, but its “headquarters was at Cold Spring
Harbor on Long Island, New York. …”7 A prominent New York urologist, William
Robinson, proclaimed about people born mentally challenged: “It is the acme of
stupidity to talk in such cases of individual liberty, of the rights of the individual.
… They have no right in the first instance to be born, but having been born, they
have no right to propagate their kind.”8
Eugenics enjoyed popularity because of pervasive bigotry. The newspaper mag-
nate William Hearst and Theodore Roosevelt thundered against “yellow niggers”
who had invaded America from Asia. When Henry Ford ran for president in the
1920s, he promised to rid the country of the “Jew bankers,” whom he accused of
causing America to enter World War I and, later, causing the Depression.9
While the Nazis sterilized 225,000 “mental defectives,” America also sterilized
such people. Indiana required sterilization in 1907 of the “retarded and criminally
insane,” and 30 other states soon followed, led by California, Virginia, and Indiana.10
By 1941, 36,000 Americans had been sterilized for a catchall condition called “fee-
blemindedness” or being born into large families on welfare.
In 2012, we learned that North Carolina sterilized 7,600 Carolinians between
1929 and 1974.11 In 2014, North Carolina legislators approved $10 million to com-
pensate the 72 living victims.
Eugenics underlay U.S. Supreme Court’s (1927) Buck v. Bell decision. Suppos-
edly mentally challenged like her mother, Carrie Buck had been committed at age
18 to a state mental institution in Virginia. Pregnant when committed, Carrie gave
birth inside to a daughter.
Harry Laughlin, an influential geneticist who worked at Cold Spring Harbor,
read a social worker’s report that Carrie had a “feeble look” and concluded that her
low intelligence was hereditary. Laughlin then declared that Buck “lived a life of
immorality and prostitution” and that all the Bucks belonged to the “shiftless, igno-
rant, worthless class of anti-social whites of the South.”
The U.S. Supreme Court upheld the Virginia law permitting Carrie Buck’s ster-
ilization. Justice Oliver Wendell Holmes wrote the majority opinion:
It is better for all the world, if instead of waiting to execute degenerate offspring
for crime, or to let them starve for their imbecility, society can prevent those who
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 329
are manifestly unfit from continuing their kind. The principle that sustains compul-
sory vaccination is broad enough to cover cutting the Fallopian tubes. (He con-
cluded that) Three generations of imbeciles are enough.
Eugenics motivated the Immigration Restriction Act of 1924, which restricted
entry to America of “inferior” peoples from Asia, Africa, Greece, India, Ireland,
Poland, and Italy, and promoted entry by English, Dutch, Scotch, Scandinavians,
and Germans. President Calvin Coolidge enthusiastically signed this act into law.
As Vice President he said, “America must be kept American. Biological laws show
… that Nordics deteriorate when mixed with other races.”12
Although the Statue of Liberty today symbolizes freedom, after 1924, thousands
of the world’s “huddled masses” had only a glimpse of it before being sent back
home. Although today we use it positively, “melting pot” in 1924 was a phrase that
scared Americans about unwanted immigrants.
Eugenics had so many false ideas that it takes a long time to enumerate them.13
After 1935, it declined in the United States. Geneticist Hermann J. Muller said that
it was “hopelessly perverted,” a cult for “advocates for race and class prejudice,
defenders of vested interests of church and State, Fascists, Hitlerites, and reaction-
aries generally.”14 Another leading geneticist, J. B. S. Haldane, said about its steril-
ization programs that “many of the deeds done in America in the name of eugenics
are about as much justified by science as were the proceedings of the Inquisition
by the Gospels.”15 Advances in population genetics prompted Haldane to famously
remark, “An ounce of algebra is worth a ton of verbal argument.”16
CASE 3: TESTING FOR DIABETES
In 2006, Maria Lopez, a 30-year-old woman, had Type 2 diabetes and struggled to
control it.17 Her extended family in East Harlem in New York City included many
diabetic relatives. At 5 feet, 6 inches, she weighed 267 pounds. She had always
fought to control her weight, found it hard to exercise, and liked French fries and
soft drinks. Diagnosed with diabetes at age 15 after she was hospitalized for spells
of fainting, she had once lost 100 pounds but had later gained it back.
Diabetes mellitus is a disease of high blood sugar levels (hyperglycemia) caused
by insufficient secretion or function of, or response to, insulin, a hormone produced
by the pancreas, which regulates metabolism of sugar. Type 1 diabetes, once called
juvenile-onset diabetes or insulin-dependent diabetes mellitus, involves low or no
secretion of insulin. Type 2 diabetes, once called adult-onset diabetes, obesity-related
diabetes, or non-insulin-dependent diabetes mellitus, involves bodily cells that are
resistant to insulin.
Diabetes may soon reach epidemic proportions: The Centers for Disease Control
estimates that 21 million Americans suffer from diabetes and another 41 million are
prediabetic.18 As they adopt Western diets high in fats and processed corn sugars,
more people worldwide succumb each year.19 Americans of Chinese, Korean, and
Japanese ancestry develop Type 2 diabetes at a rate 60 percent higher than whites.20
In 2006, epidemiologists discovered that over 800,000 New Yorkers, more than
one in eight, had Type 2 diabetes.21 This incidence is a third higher than the rest
of the nation. In East Harlem, as many as one in five people had diabetes.22
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330 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
Maria Lopez said her diabetes made her miserable. “I have never wanted this
disease to control my life.” Since first diagnosed, she had denied her disease and
that it could lead to her death. “I’m a traditionally-built woman from a culture of
strong, big women,” she said. “I eat what I like. To hell with needles and machines.”
Diabetics should monitor their blood sugar several times a day. In the past, they
did so by drawing blood with real needles, but now new, small kits allow miniscule,
almost painless sticks to do the same, greatly reducing the hassle of checking blood
sugar. Nevertheless, Maria found it annoying to use such kits.
Diabetics should give up beer, cokes, French fries, potato chips, pies, cakes,
and “everything else that tastes good,” Maria said. But many diabetics in East Har-
lem live in poverty and experience great stress. Public health educators urged Maria
to exercise daily and to eat a low-fat diet high in fresh fruits and vegetables. “That’s
not so easy to do,” she says. “And my two daughters (aged 10 and 8) like to go to
McDonald’s.”
Uncontrolled diabetes leads to kidney failure, retinal damage and blindness,
gangrene (especially in legs, leading to amputation), damage to nerves, and heart
failure.
Research to cure diabetes gets far less funding than cancer or HIV/AIDS. Most
medical care for diabetics merely manages crises rather than trying to prevent them.
In 2006, scientists at deCODE Genetics discovered a variant in a gene that
increases one’s susceptibility for Type 2 diabetes. If you have one copy of this vari-
ant, your risk of developing Type 2 diabetes is increased by 40 percent. If you have
two copies, your risk increases by 140 percent.23
In understanding this result, it is important to distinguish between relative risk
and absolute risk. Consider these statements:
Women who smoke have a 50 percent increase in risk of Type 2 diabetes.
One glass of wine 33 a day increases the risk of Type 2 diabetes by 20 percent.
These two statements tell us about the increased risk of two behaviors of women
in one group compared to another group. In other words, the first statement pro-
vides the relative risk of a group of women who smoke or drink compared to a
group of nonsmoking or nondrinking women. But neither statistic tells us anything
about the overall likelihood of women getting Type 2 diabetes, the absolute risk.
If the absolute risk of Type 2 diabetes is low, say, in Africa, then having a few
more people with this diabetes gene doesn’t mean that huge numbers of Africans
will get diabetes. On the other hand, about 38 percent of the world’s people have
one copy of the variant of the gene for Type 2 diabetes, so a lot of the world is at
risk for developing Type 2 diabetes. And where does that risk come from? Alter-
ations in lifestyle and changes in diet alter the norm of reaction of underlying genes,
such that over decades, Type 2 diabetes emerges.
CASE 4: TESTING FOR ALZHEIMER’S DISEASE
Alzheimer’s creates fear in most people because it strikes at their identity. Consider
Roy Smith, a 22-year-old male whose father suffered early-onset Alzheimer’s disease
at age 58 and who, one year later, no longer knew Roy’s name. Both of Roy’s
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 331
paternal grandparents had Alzheimer’s disease, so Roy’s father probably got two
copies of the ApoE4 gene (discussed later).
Two biomarkers in cerebral spinal fluid may identify Alzheimer’s: One tests
blood for beta amyloid, the protein fragment that builds up the plaque that clogs
arteries in the brains of Alzheimer’s victims.24 The second tests for tau, the “tangles”
in the brain of Alzheimer’s patients. Another test uses a dye to stain the same
plaques so a PET scan can measure them.25
Another assessment tests for the ApoE4 gene where “the risk conferred by
ApoE4 was most marked in the 61 to 65 age group. Individuals with two copies of
ApoE4 had a significantly lower age at onset than those with one or no copies.”26
Some individuals with two copies showed symptoms in their 30s and 40s.27 Indi-
viduals with this gene have three times the risk of getting Alzheimer’s than other
people. However, having the gene does not guarantee getting the disease, which
makes self-testing problematic, as someone could test positive and develop a pre-
symptomatic sick identity (discussed later).28
These tests come at a time when understanding of Alzheimer’s is being refined.29
Some scientists classify it as falling into three broad phases: a preclinical phase
when it begins destroying the brain (and which a presymptomatic test could iden-
tify); a middle phase characterized by lower cognitive skills in language, memory,
attention, or visual-spatial recognition than is normal for a person’s age; and the
final symptomatic phase characterized by two major symptoms that, surprisingly,
need not at first include memory problems but can include problems with recogni-
tion of names, faces, or objects, as well as changes of personality and declines in
ability to reason. In 2011, about 6 million Americans were in the middle phase,
another 6 million will soon be in the final phase, and an unknown number fall in
the first phase. The Alzheimer’s Association has a more nuanced classification and
lists seven phases.30
Most of his adult life, Roy’s father had a tremor in his right hand and at age
17, Roy already had a similar tremor. Roy’s father drank heavily during his life,
although he was never considered an alcoholic. For the last five years, at fraternity
parties in college, Roy also drank heavily.
One common pattern was seen with Roy and his father: When the father forgot
a name or where he put his keys, Roy would quickly supply the answer. This helped
his father mask his problem and kept Roy and his mother in denial about the
father’s failing mind.
Should Roy test and find out if he inherited a gene for Alzheimer’s? What if
he discovers that, like his father, he got two copies?
ETHICAL ISSUES
Preventing Disease
For some genetic diseases, no matter what people do, they will get the disease. Both
BRCA1 and BRCA2 mutations are autosomal dominant genes. These genetic diseases
are like Huntington’s in that, even if women live completely healthy lives, they will
still get breast cancer. For such women, double mastectomy may be the only action
they can take to reduce their chances of getting breast or ovarian cancer.
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332 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
Things are more complex with diabetes. Consider whether Maria is responsible
for getting diabetes. Do we want a moralistic physician saying, “You should have
eaten better! Now you have nobody to blame but yourself.” Even if her disease is
partly environmental and due to poor diet, didn’t something cause her to crave bad
foods? If a genetic mutation makes her more susceptible to Type 2 diabetes, does
that relieve some of the responsibility she has in developing the disease?
And given Roy’s two copies of the ApoE4 gene, there isn’t much he could have
done to avoid Alzheimer’s, right? Evidence suggests that drinking alcohol acceler-
ates the decline of people with this gene. Moreover, taking cognitive enhancers such
as donepezil (one trade name is Aricept) may prevent onset of severe symptoms of
Alzheimer’s by six months. Furthermore, the most significant way to maintain brain
activity is by increasing blood flow, and the best, safest way to do that is through
exercise. If we discovered that Roy had done nothing to prevent his Alzheimer’s,
could he have delayed some of it?
Recall that when a person has two copies of the gene rather than one, risk of
developing Type 2 diabetes jumps from 40 to 140 percent above normal. A large
amount of evidence in genetics suggests that this one-hit, two-hit model explains
many things. If you have two “hits” or copies of BRCA1, your chances of getting
breast cancer jump from low to high. The same is true with diabetes and
Alzheimer’s.
Most people with genetic components of conditions will have only one gene or
one copy of a genetic variant. That means that what happens in their environment,
or how they behave, will play a major role in whether or when they develop the
condition. This one-hit, two-hit model has major implications for personal respon-
sibility, motivation to be healthy, genetic fatalism, and presymptomatic testing.
Testing as Self-Interest
Testing for breast cancer genes may benefit an affected woman, such as Angelina
Jolie. Even with surgery, radiation, and chemotherapy for breast cancer, about 20
percent of women will still die from the disease. For this reason, some women
testing positive for mutations in BRCA1 or BRCA2 decided to remove both breasts
in hopes of living to an old age.
This is a significant ethical issue that requires some explanation. In the 1960s,
many women under 50 with breast cancer elected to have a bilateral mastectomy
to remove both cancerous and precancerous tissue from their breasts.31 In the 1970s
and 1980s, studies showed that for women with breast cancer, getting a lumpectomy
fared no worse than women getting bilateral mastectomies. Because significant per-
centages of women after their mastectomies experienced loss of femininity and
self-esteem, sparing them this surgery was thought to be a benefit.
Even before clinical trials finished, large numbers of women testing positive for
BRCA1 and BRCA2 mutations had preventive bilateral mastectomies. In 2002, a
clinical trial proved that, five years after surgery, women with a BRCA1 or BRCA2
mutation undergoing prophylactic bilateral mastectomy had a statistically significant
lower risk of breast cancer.32
However, if there is any lesson in the ethics of genetic testing, it is that every-
thing is complicated. Later studies suggested that the figure of 80 percent risk was
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 333
exaggerated. Women with breast cancer initially recruited for studies of the two
breast cancer genes came from families with breast cancer in grandmothers, moth-
ers, daughters, and sisters, resulting in a selection bias.33
If a woman has mutations in BRCA1, BRCA2, or CHEK2, the benefits of know-
ing early are that one can take measures to reduce one’s risk of having breast and
ovarian cancer. Taking birth control pills reduces risk of ovarian cancer by 60 per-
cent and taking the drug tamoxifen reduces risk of breast cancer by 50 percent.
And more radically, there is the option of mastectomy. These same benefits apply
to men, who account for about 2 percent of cases of breast cancer.
Similarly, testing for the gene that increases likelihood of getting Type 2 diabetes
could lead to benefits for Maria Lopez, especially if she could adopt a healthy lifestyle.
For Maria and especially her daughters, it will be important to eat a low-fat, low-
processed sugar diet and to exercise to keep their weight normal. In some cases, a
positive test for the Type 2 gene could be a wake-up call to adopt a healthy lifestyle.
Testing for Alzheimer’s could lead to some benefits, even for people with two
copies of the gene. Knowing he will need someone to take care of him in old age,
Roy might marry early. He might avoid all alcohol and take donepezil. He might
exercise daily to maximize blood flow, the primary preventive of early dementia.
He might enroll in a trial of bexarotene, which reduced amyloid plaque build-up in
mice by 50 percent.34
Testing Only to Hear Good News
When people take genetic tests, do they really understand what they’re doing? One
genetic counselor says, “When people say they want this test to find out if they
have the gene so they can make decisions, they really want to find out that they
don’t have it.”35
Yet half of people at risk for Huntington’s will have the mutated gene, and some
people will have mutations associated with diabetes, Alzheimer’s, and cancer. And
there’s no way to prepare them for this terrible news.
In the first study of presymptomatic testing for Huntington’s, most people at
risk originally said they would take the test, but after counseling, some changed
their minds.36
The same study reported that “[p]articipants found to be probable gene carriers
reported being surprised or shocked by the test result.”37 They had not expected to
have the lethal gene.
Another consideration is that self-knowledge is seldom perfect. As the SUP-
PORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of
Treatments) study showed, people simply cannot predict how they will react to bad
news, like testing positive for a terrible genetic condition.
Because Huntington’s or Alzheimer’s cannot be cured, a positive test will tell
someone that she is going to die a terrible death. Not everyone can deal with such
knowledge. As Nancy Wexler says, for some people, especially teenagers and young
adults, such knowledge could be toxic, warping their lives.
Moreover, when little treatment is available, is it wise to give people such a
diagnosis? Perhaps people should not be burdened with more truth than they can
bear.38 We need studies about how people react to unexpected genetic news.
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334 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
On the positive side, testing for genes for breast cancer or diabetes allows
intervention at an early stage. In one family, one of two sisters at hereditary risk
worried about developing breast cancer and had planned to have her breasts
removed as a preventive measure; she took the test for breast cancer genes, which
turned out to be negative and she canceled her plan. Her sister did not think she
was at risk and had refused mammograms but discovered she had the bad BRCA1
variant. A previous examination of her breasts had found nothing, but a reexam-
ination found a minuscule node, and a biopsy determined that cancer had already
begun, so a radical mastectomy was performed. Without the genetic test, this sec-
ond sister might not have discovered her cancer until many years later.
Testing as a Duty to One’s Family
Knowing one’s likely genetic fate isn’t just a concern of individuals. People are not
atomistic; they come embedded in families, with children and parents, brothers and
sisters.
The major argument favoring testing for serious genetic disease concerns child-
bearing. Nancy Wexler did not have children for fear that one might inherit Hun-
tington’s, yet perhaps her decision was misguided. If she had taken the test and
been negative, she could have had children unaffected by Huntington’s. Angelina
Jolie had children with Brad Pitt and adopted others, but probably passed on her
“faulty” gene to some of her biological daughters.
On the other hand, people who test positive should not have children or should
test embryos and implant ones lacking the Huntington’s gene. Why is that? Because
parents should want the best lives for their children, and such lives start with free-
dom from genetic disease. No parent should willingly inflict a serious genetic dis-
ease on his or her child.
A second argument for testing concerns spouses and caretakers. Consider the
following example. A man who was at risk for Huntington’s had decided not to
take the test and discussed his reasons before a large medical class. His reasons
were greeted with respect; but as the class ended and the students started to file
out, a woman cried out from the back of the room, “What about me and the kids?
What about my view about testing him?” It was the man’s wife.
She wanted to be able to plan for the future. If her husband was positive, she
would be taking care of him. She might also have been thinking of money: If her
husband was positive, he would eventually need custodial care, and they would have
to start saving up for that or, if possible, arrange for more extensive life or health
insurance. Moreover, when these neurological diseases strike, the family, as well as
the victim, will suffer emotionally; they should prepare themselves for this. Finally,
they might try to make the most of whatever time remains before onset.
Besides a strict duty to one’s family, compromises are possible. For instance,
middle-aged people who do not want to know may feel that they have escaped
the disease and that they can now take the test as a gift to their children. Another
compromise is to have blood samples taken and stored for later testing. Finally,
as John Hardwig famously wrote, some people with lethal genetic diseases may
feel they have a “duty to die” to spare their families the burden of caring for
them.39
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 335
Testing One’s Family by Testing Oneself
One advocate for families afflicted with genetic disease believes:
First and foremost, genetic testing must be viewed as a family issue, not an individual
one. The person who enrolls in a testing program should be strongly encouraged to
involve other family members, within reason. Testing one member of a family will
affect other members. Persons who refuse to involve their families may not have
considered fully the consequences for other members or for themselves.40
It is important to keep in mind that in testing for dominant, single-gene dis-
eases, such as Huntington’s and the breast cancer genes, there is no such thing as
testing only a fetus or testing only a parent: A positive fetus reveals a positive
parent; a positive parent reveals that any children are at risk.
Helping families understand genetic testing is difficult. Catherine Hayes, pres-
ident of a support group for families with Huntington’s, notes, “Many medical
professionals have difficulty viewing genetic issues in a family context. … Most
researchers cannot possibly know what it is like to grow up in a family haunted by
a genetic disease. … ”
Testing may tear families apart. Consider the right to know. Even in a life-or-
death situation, judges have ruled that relatives cannot be compelled to be tested
for compatibility as bone marrow or organ donors. Such decisions indicate that
judges will not force genetic tests on relatives.
If a person tested positive for Alzheimer’s and concealed it from a prospective spouse,
could that be grounds for annulment? Does a prospective spouse have a right to know
about such a test? Or does marrying “for better or worse” cover such questions?
Can one parent have a child tested in order to find out if the other parent is
affected? Suppose that a father tests positive for Huntington’s and refuses to tell
his teenage daughter, Laura. Suppose that a genetic counselor is aware of the
father’s result. When Laura gets married, what should the counselor do? Recom-
mend general genetic tests to her? Suppose she refuses. If she knew that her father
was positive, would she agree to testing? If so, should the counselor violate the
father’s confidentiality? To many people, the good of preventing another child with
Huntington’s outweighs the harm of violating privacy, especially where there is a
strong sense that the affected parent had an obligation to reveal his result in the
first place.
Personal Responsibility for Disease
Let us return to the question of whether Roy and Maria can do anything to prevent
getting these diseases.
Type 2 diabetes is an especially good candidate for prevention, because we
know that many Asian people do not get diabetes until they adopt Western life-
styles. (Similarly, for Asian men immigrating to North America, incidence of pros-
tate cancer jumps from 1 per 100,000 to 70 per 100,000.41) The prevailing view about
preventing diabetes is:
What is especially disturbing about the rise of Type 2 [diabetes] is that it can be
delayed and perhaps prevented with changes in diet and exercise. For although both
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336 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
types are believed to stem in part from genetic factors, Type 2 is also spurred by
obesity and inactivity. This is particularly true in those prone to illness.42
So are 21 million Americans “failures” in personal responsibility because they
have diabetes? Are another 10 million “successes” because they staved off the
genetic predisposition?43 Perhaps.
In 2007, researchers followed 91,000 women and discovered that those who
drank one or more cans of soft drinks a day, compared to those drinking less than
one can a month, were twice as likely to develop Type 2 diabetes. If nothing else,
women who carry genes for diabetes can stop drinking soft drinks. Maybe Mayor
Bloomberg was right to try to limit extra-large sizes of soft drinks at fast-food
restaurants.
Let us take a larger perspective with cancer. Cancer occurs when tumor-sup-
pressing genes or DNA-repair mechanisms cease to work, resulting in wild, uncon-
trolled growth of cells. Diabetes occurs when the body fails to allow cells to take
up glucose from the blood.
Both diseases occur when environmental inputs trigger potential in an inherited
genetic template. At the very least, avoidance of the inputs can delay onset of dis-
ease and perhaps avoid it altogether. For example, people with genetic dispositions
to alcoholism do not become alcoholics in countries where alcohol is banned. As a
person ages, her immune system and organs deteriorate, and mutated cells in her
body accumulate, making her more vulnerable to cancer and diabetes, so many
people, despite healthy lifestyles, will eventually succumb to their genetic risk.44
Society can exert some control over how many carcinogens people ingest: It
can ban tobacco in schools and hospitals, forbid smoking in public, and steeply tax
tobacco. Similarly, it can ban junk foods and sodas from schools. Individuals at risk
for cancer and diabetes can eat low-fat diets high in fiber, fresh fruits, and vegeta-
bles. In this way, both societies and individuals can reduce the incidence of cancer
and diabetes.
But what if a daughter gets cancer or diabetes anyway? Should she be blamed?
Probably not. To say that these diseases can be partially prevented by healthy living
is not to say that some cases aren’t, like Huntington’s disease, genetically inevitable.
Second, other factors in a person’s life may have prevented healthy living such that
a person truly could not have done otherwise. In these cases, blame would be wrong.
Testing and Sick Identities
Nancy Wexler rejects an attitude she found dominant among the medical commu-
nity about testing, which might be expressed as: “Come on! Take your knowledge
like a man and don’t be a sissy!”
This attitude benefits the medical community and family more than the indi-
vidual affected. If there is no cure for Huntington’s or Alzheimer’s, what’s so good
about knowing?
Nancy Wexler thinks that people who test positive for a disease long before
they experience any symptoms may develop a sick identity about it. If you’re going
to get Huntington’s, she argues, you will in fact get it, so there’s nothing you can
do about it. Why burden yourself being self-identified as “sick” long before you are?
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 337
Moreover, some people are highly suggestible. People who are concerned about
suicide often focus on the consequences of testing teenagers—a population that is
already highly suicidal. Youngsters at risk for Huntington’s, breast cancer, or diabe-
tes already agonize about going to college and spending their parents’ money, and
those who learn for certain that they have these genes may be even more
vulnerable.
Should girls under 18 years of age be tested for these genes if these genes run
in their families? At first glance, the answer seems no, for a positive answer might
take away the fun of childhood and adolescence. Moreover, great danger exists of
developing a sick identity as a “woman with breast cancer” or a “woman who will
get diabetes.” On the other hand, eating junk food and smoking start early in many
teenagers, so early testing might be beneficial.
One study published in 2011 of 3,639 clients of direct-to-consumer (DTC)
genetic testing found no increased psychological problems after these people learned
results of their genetic tests.45 After such results, Reason magazine’s science editor,
Ron Bailey, challenged the author of this text, accusing him of mollycoddling con-
sumers and thinking them too fragile to handle the truth.46
The movie GATTACA (which is recommended to watch with this chapter) illus-
trates the power of labeling by oneself and others. GATTACA’s real theme is about
the effects of labeling on a family, individual, and society. A label such as “schizo-
phrenia,” “precancerous,” or “precardiomyopathy” may affect a person so profoundly
that it cripples his or her ambition and makes him or her a quasi-invalid decades
before he or she has any symptoms. And how horrible such toxic labeling would
be if it were based on mistakes, such as assuming a variable genetic disease was
autosomal dominant.
Preventing Suicide by Not Knowing
Because 25 percent of people with Huntington’s consider suicide and 10 percent
carry it out,47 scientists have debated whether tests for such diseases should be
given. Nancy Wexler said, “We have to understand that the day you tell someone
he has this gene, his life and view of himself change forever. We’re worried about
the potential for suicide.”48
Is suicide an adequate reason for not testing? Even if some percent commit
suicide, most will not. Nancy Wexler says, “Suicide is not unreasonable. It’s not so
awful that we can’t discuss it or consider it.” She observes, “For some of my friends
who have Huntington’s, knowing that they can commit suicide gives them a certain
sense of control. They want to feel that if it gets too bad, they can have a way out.
They can do something.”49
Some scientists argue against paternalism: “I think we can trust people to make
these decisions. I’m not so convinced we researchers should be dictating how the
technology gets used.”50
After watching his father quickly forget how to use email or take a shower, Roy
swears he would rather be dead than succumb to Alzheimer’s, nor does he want to
burden his mother or sister with caring for him. So Roy might test with the aim of
discovering when to plan to kill himself or leave an advance directive asking that
he be allowed to die when Alzheimer’s starts.
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338 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
Testing Only with Good Counseling
Experts agree that testing should be offered only with good counseling. The Presi-
dent’s Commission on Bioethics (1983) emphasized that counseling should be guar-
anteed: “A full range of prescreening and follow-up services … should be available
before a program [of genetic testing] is introduced.”51
This is true; for most diseases and most people, the results will be probabilistic.
Not “You don’t have the gene,” but, “You have a 10 percent chance of getting
gene-related urologic cancer.”
Besides the three mutations of BRCA1, BRCA2, and CHEK2 that cause breast
cancer, hundreds of variant mutations are now known, each conferring a different
risk. Moreover, the risk of each variant may differ with the peculiarities of each
family. Conveying all this information accurately requires sophistication by a genetic
counselor.
But the history of genetics shows that sophistication and understanding of sub-
tle, complex issues are not strengths of the public and policymakers. Women are
likely to think, “I have the breast cancer gene” and fear death in a few years.
This is, of course, paternalistic. However, it is true that some of those who test
positive will wish they hadn’t taken the test and some may develop emotional
problems, and counseling can help such people.
Today, commercial companies aggressively market DTC genetic testing. Although
such companies say genetic counseling is available after they test, this seems like
the wrong time to offer such testing. For the reasons stated earlier, after good
counseling, many people decided not to be tested, but commercial companies surely
won’t pay counselors to give that kind of advice to prospective clients.
Most people are going to obtain such information without a genetic counselor
for two reasons. First, finding a trained genetic counselor is not easy, and many
people do not live near a major medical center that has skilled counselors. Second,
only the very best medical coverage today reimburses patients for genetic
counseling.
Genetic Testing and Insurance
Genetic testing raises financial issues. In 2000, when one woman had a preventive
radical mastectomy like Angelina Jolie, she feared her insurance company would
cancel her policy if they knew her reasons. Because this company didn’t know
anything, it thought she was being irrational and wouldn’t pay for her surgery.
For decades, an important issue about genetic testing and medical insurance
was confidentiality. Several national companies told insurance companies about
applicants for policies who posed risks.52 For people who take presymptomatic
genetic tests and test positive, insurers could raise premiums for families. Worse,
they could consider the result to be evidence of a preexisting condition and exclude
that disease from future coverage.
Congress finally passed GINA, the Genetic Information Nondiscrimination Act
of 2008. This federal law bans insurers from using knowledge about a person’s genes
to determine eligibility for insurance or rates of premiums or employers from using
the same as a basis for hiring, firing, or assigning jobs.53 Because of the likelihood
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 339
of adverse selection, GINA does not apply to people applying for life insurance or
for coverage for disability or long-term care.
Genetic testing for diabetes exposed problems in our medical system before the
Patient Protection and Affordable Care Act (PPACA). Almost no money was spent
by hospitals to prevent diabetes because doing so loses income. In contrast, and
because insurance reimburses physicians well for doing surgical procedures, waiting
until crises develop and then amputating gangrenous legs produces profits.54 Sim-
ilarly, before the PPACA, insurance companies curtailed benefits to diabetics to
discourage them from enrolling in their plans: In a 2003 survey, 87 percent of health
insurance actuaries … said that “if they were to improve coverage [for diabetics]
with richer drug benefits or easier access to specialists, they would incur financial
problems by attracting the sickest, most expensive patients.”55
Premature Announcements and Oversimplifications
Almost every year, a newspaper headline announces startling discovery of a gene
for a disease. For example, in 2007, researchers identified a gene that was a “risk
factor” for heart disease.56 Yet for previous announcements of 85 factors in 75 genes,
when scientists examined the proof that they caused heart disease, they concluded
that exactly “zero of the genes were more common in heart patients than in healthy
people.”57
In 1987, researchers retracted an earlier claim that manic depression was linked
to a gene on the X chromosome.58 By this time, earlier claims about genetic causes
of schizophrenia and alcoholism had been retracted.
Today, geneticists believe that psychiatric disorders such as schizophrenia will
not be found to be single-gene disorders. According to one leading researcher,
common forms of mental illness may be caused by three to five genes acting
together, probably with environmental cofactors.59
Like eugenics, much of the news about genetics in today’s mass media is sim-
plistic, alarmist, and premature.
Caveat Emptor: Making Money from Genetic Testing
In 2002, Myriad Genetics at Salt Lake City expanded its sales force from 85 to 600
agents to market BRCA1 testing directly to doctors and their patients. The tests,
which cost between $750 and $2,750, would benefit only 5–10 percent of people
with breast cancer caused by these genes. Presumably, Angelina Jolie paid for a test
for BRCA1 controlled by Myriad Genetics.
Unfortunately, BRCA1’s discovery offered hope of a screening test only for
women with hereditary breast and ovarian cancer—not for the 90–95 percent of
women who develop nonhereditary breast cancer.
In some ways, marketing such tests was a win-win situation for Myriad Genet-
ics. For the people who tested positive, they got their money’s worth and advance
news. People who tested negative got relief and did not complain about the money
spent. The ethical issue arises when thousands of people seek relief who are really
not at risk: They waste their money in getting a negative result. But it would be
patronizing to say they can’t spend their money as they choose, even irrationally.
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340 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
In 2010, the Government Accountability Office chastised DTC genetic testing for
“deceptive marketing practices, erroneous medical management advice from DTC genetic
testing companies, and a lack of standardization of results among companies.”60
Personalized genetic testing has been hyped relentlessly, both for asymptomatic
individuals and for patients with cancer. Almost always, enthusiasm has outpaced
evidence, greed has surpassed caution. Few genetic diseases are simple, autosomal,
and dominant; most will be combinatorial with other genes, the environment, and
many genetic variants. How then to know what genes cause what? The answer is
that millions, maybe billions, of patients will need to cough up their genes and
medical records in agreeing to being followed over decades for what happens. (Goo-
gle hoped to do this, but few people trusted it with their medical records.) Until that
happens (and it is a good question to ask as to how it will ever happen), personalized
genomic medicine may remain as distant an ideal in America as universal medical
care, national rights to die with dignity, and stem-cell cures for paralyzed patients.
Nevertheless, companies such as Renaissance RX, Nuclear Molecular Testing,
and 23andMe market personalized genetic testing, resulting in the Federal Drug
Administration’s (FDA) warning against their claims and, in some cases, denying
Medicare reimbursement. Like women with incurable breast cancer clamoring for
reimbursement for bone marrow transplant (a promised treatment entirely based
on fraudulent data), advertising creates demands without evidence.61
In 2013, the U.S. Supreme Court reversed a decision by the U.S. Patent Office
and ruled that genes, as bits of life, could not be patented.62 Thus, Myriad’s stran-
glehold on tests for breast cancer was broken, and physicians became free to develop
tests for BRCA1 and BRCA2, without paying Myriad $3,000. Indeed, this decision
opened up a new world of genetic testing.
The hot item today in commercial genetics is a $199 test from 23andMe, which will
get you 60 personalized genetic reports and tell you about your distant ancestors.63
For some people, such sequencing may give good information, especially if
genetic cofactors of disease are accurately identified. For them, learning that they
have two genes for Type 2 diabetes may cause them to keep their weight in check,
to eat healthfully, and exercise. But as Angela Trepanier, president-elect of the
National Society of Genetic Counselors, says, many people are genetic fatalists and
will say, “To hell with it. I’m doomed anyway. Where’s the cheesecake?”64
The other great danger of such an overall test is contained in the aphorism, “Be
careful what you wish for.” A person buying such a test may expect a certain kind
of news, but he may get unexpected news that is traumatic—that one of the people
he believed to be his parent is not really his biological ancestor. Or he may test to
rule out cancer and heart disease but discover he carries two copies of powerful
genes for Alzheimer’s. Obviously, buyers should study these issues and carefully
discuss their “emotional intelligence,” that is, whether they can handle unexpected
bad news. Television shows such as Who Do You Think You Are? and Roots with
Henry Louis Gates do a good job of showing the unexpected results of such tests.
Preventing Genetic Disease
Genetic testing may lead each of us to think more carefully about causes of gene-
associated diseases. Presymptomatic testing may give some people a small window
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 341
of preventive control. People at risk for cancers can avoid smoking and secondhand
smoke (exposure of children to secondhand smoke is strongly associated with adult
development of diabetes).65
Previously, three standards of evidence were discussed that are used in the law:
preponderance of evidence, clear and convincing evidence, and beyond a reason-
able doubt. These standards can be used to make a point. We know beyond a
reasonable doubt that no one with Huntington’s disease can do anything to prevent
this disease from destroying his or her brains and killing him or her. We also know
that for people with single genes for breast cancer or Huntington’s, or with two
genes for Alzheimer’s, diabetes, and other cancers, many will develop the disease.
This brings us to people with one gene for a disease like diabetes. One might
think that the best chance we have to prevent diabetes is with children and adoles-
cents, before they become overweight and have high levels of blood sugar. If they
enter young adulthood overweight, accustomed to eating lots of processed sugars,
the probability that they will develop diabetes is high.
But lifestyle interventions in the Diabetes Prevention Program (DPP), a 10-year
clinical trial on 3,234 overweight or obese prediabetics, worked best on participants
aged 60 years and over, proving it’s never too late to change.66
So can people prevent genetic diseases? The flip side of this question is whether
we can blame people for getting genetic diseases. This is a profound philosophical
question, with many implications in family life, ethics, and public policy.
To hand out blame, we would need to know, at least with clear and convincing
evidence, that they could have acted otherwise and eaten or exercised differently.
It may be true that they could have, just as it may be true that the presumption of
innocence allows some of the guilty to go free.
Also, people who do not have genes for Type 2 diabetes cannot really know
what it’s like to crave fats and sugars and to be tormented by these cravings. Yes,
everyone is tempted, but some are tempted much more intensely and continually
than others! Until we have evidence that prediabetics could have acted otherwise,
we should not blame them as individuals or in public policy. We would need evi-
dence beyond a reasonable doubt to do so, evidence we are unlikely to ever have.
Nevertheless, as with the hero of GATTACA, we should educate the young to
think they can transcend their genetic dispositions. We want to give people hope.
At the same time, when they turn out to be less-than-ideal, we don’t want to con-
demn them.
Responsibility exists on a gradient, corresponding to a gradient of free will. Two
people with the same genes, placed at birth in different families (like Dickens’s The
Prince and the Pauper) may have differing degrees of free will and responsibility for
their health or disease. This makes sense. Even so-called identical twins are identical
for disease only 60 percent of the time, proving that having a specific DNA sequence
doesn’t doom one to a disease.67
If responsibility exists on a gradient, then poor people from dysfunctional fam-
ilies and with no medical insurance are less to blame than well-educated young
adults from loving, well-off families. If responsibility exists on a gradient, then
people with genes predisposing them to diabetes or cancer are less to blame than
those blessed with good genes. If responsibility exists on a gradient, there is some
room for free will, but free will is not the only vector on the graph.
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342 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
In the end, we need to avoid both simplistic genetic fatalism (“I’ve got a gene
for X, so I’m doomed!”) and also simplistic moralism (“You could’ve done X and
prevented this!”). Neither attitude seems compatible with the emerging, compli-
cated facts. The history of eugenics shows that we always oversimplify issues. We
will do so again.
Embryos, Genetics, and CRISPR
American parents now test embryos and fetuses for 31 genetic “core conditions” of
the Recommended Uniform Screening Panel for newborns. Such parents don’t
implant embryos with cystic fibrosis; most abort when second trimester tests reveal
Down syndrome or other chromosomal abnormalities; and most states mandate
testing newborns for treatable genetic conditions such as phenylketonuria (PKU).
Some disability advocates fear such actions create new stealth eugenics. But this word
is too strong because eugenics under the Nazis (and parts of North America) was
involuntary, whereas these activities are chosen. Advocates also fear that choosing
against, say, Down fetuses “sends a message” that not all babies are valued. But surely
this is a personal decision for each family to make, and a private one, too, that need
not “send a message” to anyone because no one outside the family needs to hear of it.
In 2016, a new technique excited researchers around the world and simultane-
ously alarmed bioethicists. Clustered, regularly interspaced, short, palindromic
repeats—CRISPRs offered a way to edit genes in embryos in ways that were (1) easy
to do, such that graduate students could do so, (2) cheap ($30 versus the previous
$5,000 cost), and (3) permanent (curing cystic fibrosis in this child and future chil-
dren). Two researchers battled over patents on CRISPR, potentially delaying benefits
(like the Gallo-Montagnier feud over HIV), while critics worried that (like the Gel-
singer case) gene edits often occur in other places than their target, leading to
unpredictable results. This led to refinements in targeting (CRISPR/CPf1 versus
CRISPR/Cas9).68
Because of such unpredictability, and because changes would occur in germ cells,
not just somatic cells—and hence affect all future progeny—researchers in late 2015 assem-
bled in Washington, D.C., for a conference about the ethics of CRISPR, like the famous
one in 1975 at Asilomar, California. Asilomar resulted in voluntary guidelines for recom-
binant DNA technology, but the Washington conference had less concrete results.
Perhaps the most immediate results of CRISPR could be in “DIY Bio,” where a
smart kid in high school could insert a glow-gene in a female mouse, which could
pass it on to a litter, and suddenly, all the mice around the house glow orange in
the night (if so, as prey, they would be easy to spot, and hence, perhaps not last
long in evolution).
FURTHER READING
Catherine Hayes, “Genetic Testing for Huntington’s—A Family Issue,” New England Journal of
Medicine, vol. 327, no. 20, 1993, pp. 1449–1451.
Daniel Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity, New York:
Knopf, 1985.
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Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 343
Heidi Ledford, “CRISPR, the Disruptor,” Nature, vol. 522, no. 7554, June 3, 2015, pp. 20-24.
Lenny Moss, What Genes Can’t Do, Cambridge, MA: MIT Press, 2004.
Matt Ridley, Genome: The Autobiography of a Species in 23 Chapters, New York: Harper Collins, 2000.
Michael Specter, “The Gene Hackers,” New Yorker, November 16, 2015, pp. 52–62.
“Editing Humanity,” The Economist, August 22–28, 2015.
DISCUSSION QUESTIONS
1. How could some presymptomatic testing be considered toxic for the individual
testing, especially testing at an early age?
2. Are couples testing their embryo or fetus for Down syndrome, with the possi-
bility of abortion, practicing eugenics?
3. To what degree, if any, are prediabetics like Maria Lopez and her daughters
responsible for getting diabetes?
4. How do most claims about genetics oversimplify complex kinds of causation?
5. Why will most people taking genetic testing not get good value for their money?
6. Is it true that some people are too suggestible and that knowledge of increased
risk for genetic conditions will torture them? What if, as likely, the knowledge
is not, “You will get bone cancer” but “You have a 50 percent greater risk of
getting bone cancer than most people”?
NOTES
1. Angelina Jolie, “My Medical Choice,” New York Times, May 14, 2013.
2. Michele Tauber et al., “Angelina Jolie: I Made a Strong Choice,” People, May 27, 2013, pp. 67–73.
3. Benjamin A. Pierce, Genetics: A Conceptual Approach, 2nd ed., W. H. Freeman, New York, 2006, p. 123.
4. Nancy Wexler, “Should You Test for Huntington’s?” UAB, May 14, 1996.
5. Natalie Angier, “Team Reports Genetic Cause of Huntington’s,” New York Times, March 24, 1993, p. A1.
6. Rita Rubin, “Ray of Hope for Huntington’s,” USA Today, October 28, 2008, pp. A1–2.
7. Daniel Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity, Knopf, New York,
1985, pp. 3–19.
8. Ibid., pp. 93–94.
9. Robert Lacey, Ford: The Man and the Machine, Little, Brown, New York, 1987.
10. Kevles, In the Name of Eugenics, p. 97.
11. Kim Severson, “Payment Set for Those Sterilized in Program,” New York Times, January 11, 2012, p. A13.
12. Kevles, In the Name of Eugenics, p. 97.
13. Here is a start about the mistakes of the Eugenics Movement: (1) The reductionist assumption that
each trait identified by social distinctions. Prostitution, retardation, poverty, and criminality were each
supposedly caused by a single gene. (2) The reductionist assumption that each gene causes a disease
in a simplistic, one-gene-to-one way. A few genetic diseases do work this way, but most do not. (3)
Ignorance about recessive inheritance. Two unaffected carriers can each pass a gene for a recessive trait
to a child, who will then be homozygous for the trait. (4) Ignorance of environmental effects on expres-
sion of genes. How a gene, or a combination of genes, is expressed depends partly on what happens
during gestation, in early childhood, and in the environment. Genes have a fan-like range of expres-
sion (their norm of reaction). (5) Naiveté about the ease of controlling reproduction in couples. Humans
are driven to have sex, and if they aren’t careful, children result. When informed of risk of a child
with genetic disease, few humans can or will prevent birth of children, especially without access to
contraception. (6) Ignorance of mutations and chromosomal breakage. Not knowing about these aspects
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344 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease
of genetics, eugenicists mistakenly believed that if all mentally challenged people could be prevented
from reproducing, their conditions could be eliminated from the gene pool. (7) Ignorance of population
genetics. Eugenicists hoped to perfect humanity through selective breeding, but population genetics
have since shown that there will be a regression to the mean. (8) Regression to the mean is the inher-
ent tendency in stable populations to return to an average value over time; in population genetics,
the underlying causes creating a mean value will eventually normalize any deviant values.
14. Herman Muller, Out of the Night: A Biologist’s View of the Future, Vanguard, New York, 1935, quoted
in Kevles, In the Name of Eugenics, p. 164.
15. Ronald W. Clark, The Life and Work of J. B. S. Haldane, Coward-McCann, New York, 1968, p. 70,
quoted in Kevles, In the Name of Eugenics, p. 127.
16. B. S. Haldane, “Toward a Perfected Posterity,” The World Today 45 (December 1924), quoted in
Kevles, In the Name of Eugenics, p. 127.
17. “Maria Lopez” is a composite, based on a 4-part series in the New York Times on the emerging
epidemic in diabetes, January 9–12, 2006.
18. N. R. Kleinfield, “Diabetes and Its Awful Toll Quietly Emerge as a Crisis,” New York Times, January
9, 2006, p. A1.
19. World Health Organization, Department of Noncommunicable Disease Surveillance, Definition,
Diagnosis and Classification of Diabetes Mellitus and its Complications. World Health Organization,
Geneva, 1999.
20. Marc Santora, “East Meets West, Adding Pounds and Peril,” New York Times, January 12, 2006,
p. A1.
21. Kleinfield, “Diabetes and Its Awful Toll.”
22. N. R. Kleinfield, “Living at the Epicenter of Diabetes, Defiance and Despair,” New York Times,
January 10, 2006, p. A1.
23. “Diabetes Gene Detected,” Sydney Morning Herald, January 19, 2006.
24. Gina Kolata, “Two Tests Could Aid in Risk Assessment and Early Diagnosis of Alzheimer’s, New
York Times, January 19, 2011.
25. Katherine Greider, “Diagnosing Alzheimer’s,” AARP Bulletin, October 2011, p. 10.
26. D. Blacker, “ApoE-4 and Age at Onset of Alzheimer’s Disease: The NIMH Genetics Initiative,”
Neurology 48, no. 1 (January 1997), pp. 139–147.
27. R. Caselli et al., “Longitudinal Modeling of Age-Related Memory Decline and the APOE-4 Effect,”
New England Journal of Medicine, July 16, 2009, p. 256.
28. Alzheimer’s Association, “Genetic Testing,” http://www.alz.org/documents_custom/statements/
genetic_testing .
29. Pam Belluck, “New Guidelines Offered to Diagnose Alzheimer’s,” New York Times, April 19, 2011,
p. A13.
30. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp.
31. Denise Grady, “Study Shows Few Women Rue Preventive Breast Operation,” New York Times, April
17, 1999, p. A14.
32. Timothy Rebbeck et al., “Bilateral Prophylactic Mastectomy Reduces Breast Cancer Risk in BRCA1
and BRCA2 Mutation Carriers: The PROSE Study Group,” Journal of Clinical Oncology 22, no. 6
(March 15, 2004), pp. 1055–1062.
33. Paul Recer, “Studies May Have Exaggerated Breast Cancer Risk,” Birmingham News, August 21, 2002,
p. 5A.
34. Justin Lowenthal et al., “The Ethics of Early Evidence—Preparing for a Possible Breakthrough in
Alzheimer’s Disease,” New England Journal of Medicine 367 (August 9, 2012), pp. 488–490.
35. Denise Grady, “The Ticking of a Time Bomb in the Genes,” Discover, June 1987, p. 34.
36. G. Meissen et al., “Predictive Testing for Huntington’s Disease with Use of a Linked DNA Marker,”
New England Journal of Medicine 318, no. 9 (March 3, 1988), p. 538ff.
37. Ibid.
38. Danish Council of Ethics, Ethics and Mapping of the Human Genome, 1993.
39. John Hardwig, “A Duty to Die?” Hastings Center Report 27, no. 2 (March–April 1997), pp. 34–42.
pen07945_ch15_325-345.indd 344 9/8/16 9:52 AM
http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
http://www.alz.org/documents_custom/statements/genetic_testing
http://www.alz.org/documents_custom/statements/genetic_testing
Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease 345
40. Catherine Hayes, “Genetic Testing for Huntington’s Disease,” New England Journal of Medicine 327
(1992), pp. 1449–1451; Natalie Angier, “Vexing Pursuit of Breast Cancer Gene,” New York Times,
July 12, 1994.
41. C. Muir, Cancer Incidence in Five Continents, International Agency for Research on Cancer, Lyon,
1987, Table 12–2.
42. Kleinfield, “Diabetes and Its Awful Toll.”
43. L. R. Vartanian et al., “Effects of Soft Drink Consumption on Nutrition and Health: A Systematic
Review and Meta-analysis,” American Journal of Public Health 97, no. 4 (2007), pp. 667–675.
44. “Cancer Genetics,” in Pierce, Genetics, pp. 627–637.
45. C. Bloss et al., “Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk,” New
England Journal of Medicine 364 (February 10, 2011), pp. 524–533.
46. Ronald Bailey, “Bioethicists Can’t Handle the Truth,” Reason, February 1, 2011. See also Gregory
Pence, “Should We Test for Disease That Can’t Be Cured?” Birmingham News, January 9, 2011,
http://blog.al.com/birmingham-news-commentary/2011/01/viewpoints_should_we_test_for.html.
47. D. Craufurd and R. Harris, “Ethics of Predictive Testing for Huntington’s Disease: The Need for
More Information,” British Medical Journal 293 (July 26, 1986), pp. 249–251.
48. M. Waldoz, “Probing the Cell: The Diagnostic Power of Genetics Is Posing Hard Medical Choices,
“ Wall Street Journal, April 1986, p. A1.
49. Grady, “The Ticking of a Time Bomb.”
50. Arthur Beaudet of Baylor College of Medicine, quoted in Waldoz, “Probing the Cell.”
51. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behav-
ioral Research, Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implica-
tions for Genetic Screening, Counseling, and Educational Problems, U.S. Government Printing Office,
Washington, D.C., 1983.
52. C. Norton, “Absolutely Not Confidential,” Hippocrates, March–April 1989, pp. 53–59; see also Med-
ical Records: Getting Yours, Public Citizen, Washington D.C., 1986.
53. Genetic Information Nondiscrimination Act (GINA) of 2008: Information for Researchers and
Health Care Professionals, http://www.genome.gov/24519851.
54. Ian Urbina, “In the Treatment of Diabetes, Success Often Does Not Pay,” New York Times, January
11, 2006, p. A1.
55. Ibid.
56. Nicholas Wade, “Gene Identified as Risk Factor for Heart Ills,” New York Times, May 4, 2007, p. A1.
57. Sharon Begley, “Reading the Book of Jim,” Newsweek, June 4, 2007, p. 50.
58. Natalie Angier, “Gene for Mental Illness Proves Elusive,” New York Times, January 13, 1993, p. B3.
59. Miron Baron, quoted in Angier, “Gene for Mental Illness Proves Elusive.”
60. James P. Evans et al., “Preparing for a Consumer-Driven Genomic Age,” New England Journal of
Medicine 363, no. 12 (September 16, 2010), p. 1101.
61. R. Abelson and J. Creswell, “Pursuit of Cash Taints Promise of Gene Tests,” New York Times, June
24, 2015; Eric Lander, “Cutting the Gordian Helix—Regulating Genomic Testing in the Era of Pre-
cision Medicine,” New England Journal of Medicine 372, no. 13 (March 26, 2015), pp. 1185–1186;
George Annas and Sherman Elias, “23andMe and the FDA,” New England Journal of Medicine 370,
no. 11 (March 13, 2014), pp. 985–988.
62. Adam Liptak, “Justices, 9-0, Bar Patenting Human Genes,” New York Times, June 13, 2013, p. A1.
63. https://www.23andme.com/?utm_source=google&utm_medium=cpc&utm_campaign=Search-Be-
ta-Genetic&utm_term=mid237&gclid=CI_mouHXkbgCFed-Z7AodqD4AqA.
64. Begley, “Reading the Book of Jim.”
65. “New Research Shows Secondhand Smoke Raises Diabetes Risk,” British Medical Journal, April 17,
2006.
66. Judith Fradkin et al., “What’s Preventing Us from Preventing Type 2 Diabetes?” New England Jour-
nal of Medicine 367, no. 13 (September 27, 2012), p. 1177.
67. Begley, “Reading the Book of Jim,” p. 48.
68. “Editing Humanity,” The Economist, August 22, 2015, pp. 4–8.
pen07945_ch15_325-345.indd 345 9/8/16 9:52 AM
http://blog.al.com/birmingham-news-commentary/2011/01/viewpoints_should_we_test_for.html
http://www.genome.gov/24519851
https://www.23andme.com/?utm_source=google&utm_medium=cpc&utm_campaign=Search-Be-ta-Genetic&utm_term=mid237&gclid=CI_mouHXkbgCFed-Z7AodqD4AqA
https://www.23andme.com/?utm_source=google&utm_medium=cpc&utm_campaign=Search-Be-ta-Genetic&utm_term=mid237&gclid=CI_mouHXkbgCFed-Z7AodqD4AqA
C H A P T E R 1 6
Ethical Issues in Stopping
the Global Spread of Infectious
Diseases: AIDS, Ebola, and Zika
Blocking the spread of AIDS around the world presents a challenge for bioethics.
Since the start of this scourge, over 60 million people have contracted HIV, the virus
that causes AIDS, and nearly 30 million have died of HIV-related problems.1 The
good news is that because of new therapies, AIDS-related deaths have fallen
42 percent since their peak in 2004.
This chapter’s introductory sections discuss past epidemics, medical facts about
AIDS, scandals about HIV infection of the blood supply, Kimberly Bergalis, homo-
sexuality, contact tracing, mandatory screening, and needle-exchange programs.
This chapter’s key ethical issue involves four approaches to stopping AIDS and
then ends by extrapolating what we’ve learned about AIDS to ethical problems
raised by other infectious diseases, such as Ebola and the Zika virus.
BACKGROUND: EPIDEMICS, PLAGUES, AND AIDS
Throughout history, epidemics have terrified humans. In 1348 in Europe, the deadly
disease known as the Black Death or simply the plague erupted. Bubonic plague, the
most common and classic form of the disease, displayed inflamed swellings of the
lymphatic glands in the groin and armpits and was transmitted by fleas. Rats and
other small mammals carried fleas to humans, and bites of fleas transmitted plague
to humans. The bacillus Yersinia pestis causes bubonic plague. Untreated bubonic
plague killed 50 percent of its victims. Today, antibiotics treat its earliest stages.
A virulent complication of untreated bubonic plague, pneumonic plague, involved
the lungs. Easily transmitted by coughing, the microbe killed almost universally.
Because of it, many physicians of the fourteenth century left medicine.
Back then, astrologers claimed that plague resulted from the conjunction of
Saturn, Mars, and Jupiter; others claimed it resulted from sulfurous fumes released
by earthquakes. Clergy taught that God sent it to punish humans for their sins.
Historian Barbara Tuchman tells us that during medieval epidemics, “organized
groups of 200 to 300 … marched from city to city, stripped to the waist, scourging
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 347
themselves with leather whips tipped with iron spikes until they bled. While they
cried aloud to Christ and the Virgin for pity, … the watching townspeople sobbed
in sympathy.”2 In so marching, they spread infected fleas.
The fearful ignorance of the times required scapegoats (in the Bible, goats are
sacrificed to atone for bad things). So people accused Orthodox Jews, with their
distinctive dress, of poisoning wells and spreading plague. When atonement pro-
cessions reached cities, they often attacked the Jewish quarter, trapped Jews inside,
and set the area on fire. When plague followed, Jews were blamed but not the
procession (which had brought the fleas).
Leprosy, cholera, and syphilis also terrified people. Leprosy, or Hansen’s dis-
ease, creates lesions on the skin and kills slowly over years. Twentieth-century med-
icine learned that people get infected only through exposure over many months
through the skin or mucosa. Before then, society banished lepers and forced them
to live in isolated lepers’ colonies; if lepers walked outside the colony, they were
required to ring a cowbell to warn people away.
Great epidemics of cholera from infected water also created fear in the public.
During the epidemic of 1813, Americans blamed those who fell ill, especially wan-
ton prostitutes, drunken Irish, lazy people of color, and the dirty poor—many of
whom lived along creeks used for both drinking water and defecation. Ministers
praised God for cholera for “cleansing the filth from society.”
In 1854, London physician John Snow realized that cholera only broke out in
the district served by the Broad Street pump. He correctly inferred that infected
water spread cholera and that clean water could prevent it. Nevertheless, many
Americans clung to the belief that sin and being Irish caused cholera, and so many
Americans died needlessly in the third great cholera epidemic in America of 1862.
During the Civil War at Shiloh, its deadliest battle with 22,000 men killed in 2 days,
as many men died from cholera as from bullets.
Everyone also blamed victims of syphilis for their disease. As discussed in Chapter 9,
moralists blamed vice for the disease, whereas scientists blamed spirochetes.
Not until public acceptance of the germ theory of disease after 1900 did public
health prevent epidemics of cholera. It took half a century for officials to translate
a medical insight into public policy to save lives.
A Brief History of AIDS
In 1959, a blood sample collected from a man in Kinshasa, Democratic Republic of
Congo, later proved positive for HIV. Genetic analysis of his blood suggests that HIV-1
may have stemmed from a virus that existed in the early 1940s or even the late 1930s.
Researcher Beatrice Hahn at the University of Alabama at Birmingham (UAB)
proved that HIV spread in southern Cameroon to humans from wild chimpanzees.
HIV infected the blood of hunters there as they caught, killed, and cut up the
chimpanzees for bushmeat.3
Around 1978, gay men in America, Sweden, and Haiti began to show signs of
AIDS. Between 1979 and 1981, Kaposi’s sarcoma and Pneumocystis carinii pneumo-
nia unexpectedly showed up in gay males in Los Angeles and New York.
On June 5, 1981, the Centers for Disease Control (CDC) announced the discov-
ery of a mysterious “gay-related immune deficiency” (GRID) that had killed three
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348 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
gay men; only a month later, 108 cases of GRID were reported and 46 gay men
were dead.
Three months after the first report of GRID in the summer of 1981, CDC
announced that babies of drug-dependent women in New York City also had the
disease. GRID was changed to acquired immune deficiency syndrome or AIDS.
In 1982, when physicians in New York and California had already seen hun-
dreds of cases of AIDS, they did not know its incubation period or causative agent.
CDC guessed that incubation could take years and that many thousands of people
could be infected. No one then diagnosed with AIDS had lived more than two years,
so AIDS frightened everyone.
In 1983, Luc Montagnier and the Institut Pasteur in France discovered that the
human immunodeficiency virus, HIV, caused AIDS. Today, this virus is called HIV-1.
In 1986, scientists discovered a second form, HIV-2, which may have been infecting
residents for decades. HIV-2 develops more slowly, is milder than HIV-1, and can be
transmitted more easily heterosexually. It is rare outside West Africa.4 HIV-1 has four
sub-strains: M, N, O, and P. The first three strains came from chimpanzees, the last,
a gorilla.5 The virus existed in primates for at least 32,000 years, but sometime
between 1900 and 1959, “something allowed a human infection with a chimpanzee
virus to spread widely enough to evolve into modern HIV-1, which could spread
easily among humans.”6
As early as 1982, the CDC warned that donated blood could carry the agent
causing AIDS. Blood could have been screened for hepatitis, thereby indirectly
screening for HIV, but officials deemed this too expensive and alas, did not screen.
In 1984, the Federal Drug Administration (FDA) approved the ELISA test for
antibodies to HIV. Now blood donated or otherwise obtained could be tested for
HIV. However, authorities running blood banks did not immediately test blood
using the ELISA test. Why?
Various groups politicized every fact about HIV and AIDS. A little historical
background shows how this occurred. This background foreshadowed later politi-
cized battles about severe acute respiratory syndrome (SARS), bird flu, Ebola, and
the Zika virus.
AIDS and Ideology
By the end of 1981, CDC epidemiologists realized that a new kind of infectious
disease of unknown nature and transmission was killing gay men. CDC postulated
that sex among gay men might be spreading the disease, especially sex with anon-
ymous partners in bathhouses in New York and San Francisco.
These bathhouses constituted what epidemiologists call an amplification system
for the spread of a disease. Because some of the men had many anonymous sexual
partners, some of whom, in turn, traveled to other places for sex with multiple part-
ners, the virus could spread quickly. Another such system was easy, cheap travel by
plane around the world. At one point, a best-selling book identified a gay airline
steward as Patient Zero, the first person to bring HIV from Africa to the United
States and to introduce it to gay bathhouses (the publisher later admitted that Patient
Zero was a publicity stunt to get attention for the book and for HIV-infected patients).7
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 349
Sharing needles and syringes to inject drugs constitutes another amplification
system. Blood withdrawn from a user’s vein mixes both with a drug in the syringe
and with viral particles from previous users.
A community’s blood supply constitutes another amplification system. Blood
banks pool both plasma and clotting factor for hemophiliacs from many sources.
So one infected donor can infect many recipients.
The CDC called upon federal and state governments to fund studies to see if a
new lethal disease had appeared in the blood system, but none responded. At the
time, medical experts believed that all lethal infectious diseases had been discov-
ered, so no one suspected a new one.
By 1981, gay men and lesbians had won some freedom from prejudice: Resis-
tance against oppressive police roundups began in 1969 at a bar called the Stonewall
Inn in Greenwich Village in New York City. In the famous Stonewall Riots there,
gay men resisted the harassment by police, fostering a new pride and encouraging
men to come out of the closet.
During the 1970s, sexual freedom spread among heterosexuals, fueled by birth
control, permissive attitudes toward nonmarital sex, Woodstock, mind-altering
drugs, and rebellion against authority. Gay men and lesbians rode the crest of a
larger wave of sexual change crashing through society. In medicine, psychiatrists
removed homosexuality from their list of psychiatric illnesses.
But many still despised gay men. Reverend Jerry Falwell blamed homosexuals
for AIDS. In 1982, the secretary of Moral Majority, Greg Dixon, wrote, “If homo-
sexuals are not stopped, they will in time infect the entire nation, and America will
be destroyed—as entire civilizations have fallen in the past.”8 In 2001, when the
World Trade Center was destroyed, Falwell and Pat Robertson blamed gays and
atheists for the event, saying it was God’s punishment on America.9
The head of the Southern Baptist Convention said that God had created AIDS
to “indicate His displeasure with the homosexual lifestyle.”10 Monsignor Edward
Clark of St. John’s University in Queens, New York, claimed that “if gay men
would stop promiscuous sodomy, the AIDS virus would disappear from America.”11
Conservative Patrick Buchanan decried, “The poor homosexuals—they have
declared war on nature and now nature is exacting an awful retribution.”12
Falwell, who founded Moral Majority, a religious-political organization, advo-
cated shutting down bathhouses where gay men engaged in anonymous sex. Own-
ers of such bathhouses countered with ads in gay newspapers extolling freedom
and calling Falwell a bigot. When gay activist Larry Kramer argued that shutting
down bathhouses would save gay lives, gay men attacked him as a prude.
French philosopher Michel Foucault asserted that HIV did not cause AIDS and
that HIV was not spread sexually. Foucault himself patronized bathhouses in the 1970s
and died of AIDS in 1984, earning the ignominy of having his view refuted by the
manner of his own death.
In the mid-1980s, the New York Review of Books contributing editor Jonathan
Lieberson, a graduate student in philosophy at Columbia University, penned several
influential articles about AIDS. In one such essay, he claimed that irrationality about
AIDS was running wild, that only 10 percent of HIV-infected people would ever get
AIDS, and that contact tracing should never be used to track down sex partners of
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350 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
infected men, because the new freedom of gay men was too important to sacrifice.13
Around 1989, Lieberson died of AIDS.14
Transmission of HIV and Testing for HIV
HIV is transmitted in only three ways: through blood, through semen, or to babies
during birth or breast-feeding.
Without treatment, HIV causes a progressive weakening of the immune system
and hence decreases the ability to resist normal infections. Without antiretroviral
drugs, the average time during clinical latency between HIV-infection and AIDS in
2015 was 10 years and between AIDS and death, without therapy, 3 years.
Cells called CD4 lymphocytes (or simply T4 cells) indicate the health of the
immune system: the lower the number of cells, the worse it is doing. When the
count of CD4 cells drops below 200, a person with AIDS usually gets opportunistic
infections such as Kaposi’s sarcoma, PCP, a fungal infection called oral thrush, or
cervical cancer.
In 1984 and in the midst of the above controversies, authorities weighed
whether to test America’s blood supply for hepatitis as an indirect test for HIV.
Those against testing won.
Some vocal gay men argued that their donations of blood should not be “quar-
antined” and that HIV had not really been proven to cause AIDS. Blood banks
worried that if they screened blood they might lose income (although they do not
charge for blood, they make money classifying, transferring, and storing blood).
In May 1984, Stanford University started screening blood for HIV. Two months
later, defending a national decision not to screen, Health and Human Services sec-
retary Margaret Heckler famously said, “I want to assure the American people that
the blood supply is 100 percent safe. …”15
Joseph Bove, M.D., who chaired the FDA’s committee overseeing the safety
of the nation’s blood, also said that the “overreacting press” had caused hysteria
about blood.16 In March 1984, when the CDC counted 73 cases of deaths from
AIDS caused by transfusion, Bove dismissed this danger: “More people are killed
by bee stings.”17 Six months later, 269 people had died of AIDS from tainted
blood.
In making these statements, Bove and Heckler either lied, were incompetent,
or both. In March 1985, most American blood banks began using the ELISA test
to screen blood, a full year after they should have begun. Because of this lag, thou-
sands of Americans and hemophiliacs became infected with HIV. One of them was
Ryan White, a hemophiliac who died at age 18 in 1990.
In 1985, a female prostitute and intravenous drug user tested positive for HIV. Now
that Ryan White and a female prostitute had the disease, AIDS seemed to be no longer
just a gay disease. It had infiltrated heterosexuals and the country’s blood supply.
People hoped that HIV-infected people would not die. That changed dramati-
cally in 1986, when researchers predicted that, without treatment, almost all HIV-
infected people would develop AIDS and die.
The same year, a few gutsy people founded ACT UP (AIDS Coalition to Unleash
Power) to help people with AIDS. Its demonstrations forced the FDA to shorten its
process for approving new drugs by two years, and in 1987, AZT (zidovudine)
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 351
became the first anti-HIV drug. It later forced Big Pharma to allow Indian companies
to sell generic versions of anti-HIV drugs in developing countries.
In 1996, a decade later, scientists discovered protease inhibitors. These drugs
block the protease enzyme needed to create new, mature particles of HIV and allow
HIV-infected people to live somewhat normal lives.
At the start of AIDS, 25 percent of children born of infected mothers became
infected. AZT blocks such vertical transmission to less than 1 percent.
Protease inhibitors plus AZT can cost $10,000 a year, and they cause severe
complications. They do not cure HIV infection but provide a way to survive it. The
author knows professors, physicians, and administrators in Birmingham who were
infected in the early 1980s, got these drugs early, and are still alive today.
In 2001, about 65,000 Americans over 50 lived with HIV. In 2015, CDC esti-
mated that 1.2 million Americans live with HIV.18 At the National Institutes of
Health (NIH), the Multicenter AIDS Cohort Study has been following the health
of 2,000 subjects for the past 25 years. Although alive, many people with HIV in
their late 50s suffer from Parkinson’s or dementia, end-stage liver disease, diabetes,
depression, and bouts of pneumonia. Despite these problems, as one person says,
enduring such problems as a result of escaping AIDS is “better than the
alternative.”
KIMBERLY BERGALIS’S CASE
In 1987, David Acer, a dentist in Jensen Beach, Florida, extracted two molars from
21-year-old Kimberly Bergalis, a junior at the University of Florida in Gainesville.
After graduating in 1990, Kimberly tested positive for HIV.
A Caucasian male in his early 30s, Acer admitted to having had sexual relations
during the previous decade with as many as 150 men. In 1987, he developed Kapo-
si’s sarcoma and, two months later, treated Bergalis. In 1989, he sold his practice
and his tools and destroyed his records. In 1990, he died of AIDS.
When his former patients got tested, six others tested HIV positive. By using
DNA sequencing, CDC proved that Acer had infected all seven patients.
All seven felt betrayed by the health professional. In 1991, with little hair and
weighing only 70 pounds, Bergalis testified before Congress, passionately urging
that Congress make it a felony for HIV+ health professionals to interact with patients
without revealing their HIV status. The law never passed, and Bergalis died publicly
and painfully in December at age 23.
Exactly how or why Dr. Acer infected his patients remains a mystery. Some
people believe that he deliberately infected heterosexuals so that Americans would
no longer see AIDS as a disease of gay men. The truth will never be known. In
some ways, it is better for public health if Dr. Acer deliberately infected Bergalis.
Why is that? Because if he did, then she did not get infected through unsafe prac-
tices, and hence, no reason exists to test health professionals for HIV.
Retrospective analysis of cases of HIV+ dentists, surgeons, and internists reveal
virtually no cases of accidental infection of patients. In general, probability of infec-
tion varies with the amount of blood injected, how deeply the injection goes, and
how much virus the blood contains. Also, the same procedures (double-gloving,
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352 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
masking, and not reusing needles) that protect patients from infection also protect
physicians and dentists from getting infected.
TWO ETHICAL ISSUES IN STOPPING THE
SPREAD OF AIDS
Homosexuality
Some people believe that teaching gay men how to practice safe sex—a harm reduc-
tion strategy—condones such sex between men. The opposite view is that sex
between men is sinful and should not be tolerated. As we shall see later, worldviews
collide over homosexuality and stopping AIDS. Is conceptualizing homosexuality as
an evil lifestyle homophobia? Part of the problem of stopping AIDS? Or is tolerance
of homosexuality, drugs, and other immorality a root cause of the spread of AIDS?
Homosexuality has existed for thousands of years. In ancient Greece, bisexual-
ity among men was popular, and leaders among Greek men such as Socrates pre-
ferred male lovers. Gay figures include Roman emperor Hadrian, King Frederick
the Great of Prussia, playwright Tennessee Williams, and novelist Gore Vidal.
According to the late Yale historian John Boswell, Christianity tolerated homosexu-
ality more before the twelfth century than in later centuries.19
Although some people see homosexuality as a choice, most medical researchers
today believe that sexual orientation is biologically determined. The lived experience
of gay men and lesbians testifies to this biological view. Virtually every lesbian or
gay man reports fighting against his or her sexual attraction and trying to accept
the norm of heterosexuality. Because teenagers want to fit in, most gay and lesbian
teenagers resist being attracted to members of the same sex and date heterosexually.
Their final sexual orientation appears a resisted discovery rather than as a choice.
Many people harbor the false belief that state or federal laws protect sexual
orientation. Only if Congress, a state, a city, or a county passed such a law would
it be illegal to evict or fire someone because of homosexuality. Currently, except for
San Francisco and two cities in Colorado, it is legal to do so almost everywhere.
Indeed, in Bowers v. Hardwick, the U.S. Supreme Court in 1988 allowed Georgia
to keep a law making forms of anal and oral intercourse illegal between members
of the same sex. Ironically, a footnote to the decision did not allow the state to
criminalize the same behavior among heterosexuals. Obviously, this decision vio-
lates Mill’s harm principle and cries out for an explanation of why such sexual
behavior between members of the same sex is a crime but not a crime when between
members of different sexes.
Five years later in 2003, the U.S. Supreme Court admitted in Lawrence v. Texas
that it had made a mistake, that the issue was not (as the Bowers court said) whether
the Constitution conferred upon “homosexuals a right to engage in sodomy,” but
whether the Constitution conferred a liberty interest to all Americans broad enough
to allow consenting sex among adults.20
In 2013, the U.S. Supreme Court overturned the Defense of Marriage Act
(DOMA); in 2015, the same Supreme Court in Obergefell v. Hodges ruled 5–4 that
the constitutional principle of equal protection overrides any state or local ban on
same-sex marriage and guarantees the same rights for same-sex marriages as it does
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 353
for heterosexual marriages. For the majority, Justice Anthony Kennedy wrote, “The
Constitution promises liberty to all within its reach, a liberty that includes certain
specific rights that allow persons, within a lawful realm, to define and express their
identity.” This legislation upheld in 13 states, including the District of Columbia
that granted the legalization of marriage between same-sex partners.
HIV Exceptionalism
In the first decade of AIDS, authorities in public health bowed to pressure from
AIDS activists and did not pursue contact tracing the way they had with other
sexually transmissible diseases. Because of prejudice against gay men, they feared
that tracing those exposed to HIV might lead to gay people losing their medical
insurance or jobs. Besides, until AZT arrived in 1986, authorities could offer no
treatment, so few reasons existed to identify. Thus, authorities then made an excep-
tion for contact tracing for HIV.
Today, with AZT and protease inhibitors, early notification can save lives by
helping the infected get prompt treatment. Now, if an HIV+ person knowingly
practices unsafe sex, he can be charged in many states with a crime. In 1997 in
New York, Nushawn Williams knew he was HIV+ and infected 28 teenage girls; he
went to jail for doing so. In this case, contact tracing prevented even more girls
from becoming infected.
HIV exceptionalism is now generally regarded in public health as a mistake. In
2006, the CDC recommended that physicians routinely test all patients for HIV.
STOPPING THE WORLDWIDE SPREAD OF HIV:
FOUR VIEWS
In the first edition of this book in 1990, it seemed shocking that by 1987, 60,000
Americans had died of AIDS—more than had died in the Vietnam War. Researchers
guessed that 10 million people might have then been infected worldwide. Two years
later, gay activist Larry Kramer wrote:
When I first became aware of this disease, there were only 43 cases in the United
States; now there are 12 million people infected with AIDS around the world; within
the next eight years, this figure could rise to 40 million. From 43 to 40 million
should be enough not only to cause some level of panic, but also to make everyone
ask: how is this plague spreading so quickly? Indeed, 1 million new people world-
wide were infected with the AIDS virus last year alone.21
Twenty-five years after Larry Kramer wrote this, and after a quarter century of
AIDS, we still argue about how to stop this disease. Meanwhile, the number of
victims of AIDS keeps rising.
By 2001, AIDS had killed nearly half a million Americans, but at least in Amer-
ica, HIV had become a chronic infection with which victims could live. However,
in the developing world, AIDS seemed unstoppable.
In 2001, when the virus had killed 20 million people and infected another
40 million, Secretary-General Kofi Annan of the United Nations called for new
efforts. Irish singer and activist Bono pressured America to give more aid, and under
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354 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
the George W. Bush administration, it did. Politicians aimed at universal access to
treatment, costing $20 billion a year, and $10 billion of that idealistic number was
actually donated.22 In 2008, Bush signed President’s Emergency Plan for AIDS Relief
(PEPFAR), committing $48 billion over the next five years.23
In 2006, UN Secretary-General Kofi Annan lamented that, despite progress, AIDS
still was “the single greatest reversal in the history of human development.” Why was
Annan so gloomy? Because after 25 years of the epidemic, AIDS had killed 25 million
humans. By 2015, the number of people slayed by AIDS will top 40 million.
Year Living HIV-Infected Cumulative Deaths24
1981 600 200
1990 10,000,000 1,000,000
1999 30,000,000 10,000,000
2006 35,000,000 25,000,000
2008 33,000,000 29,000,000
2012 30,000,000 30,000,000
2014 37,000,000 34,000,000
So how to stop AIDS is an urgent question. Over the next four decades, HIV
could infect as few as 10 million or as many as a billion people. Useless approaches
affect more people’s lives than any other issue in bioethics. Stopping HIV with
proven strategies could save more lives than surgery, drugs, hospitals, and vaccina-
tions combined.
From this perspective, global bioethics clamors for attention. If moral actions
create the greatest good for the greatest number of humans, then moral people will
fight to end AIDS. If past trends continue, the 35 million people now infected could
pass HIV on to another 35 million people.
Over the past 35 years, HIV has changed whom it infects. Women compose
half of the world’s HIV-infected population, 60 percent in sub-Saharan Africa.
Young people under age 25 make up half of new infections worldwide.
The part of Africa south of the Sahara Desert has the greatest pool of HIV
infection, 2.56 million. South Africa alone has 5.6 million infected.
China and India cause concern because of their blood-amplification systems
and populations of a billion each; India has 2.4 million HIV-infected people, whereas
China officially has 740,000 but probably has over a million.
Eastern Europe and Central Asia (Ukraine, Kazakhstan, etc.) with large numbers of
intravenous drug users had 1.5 million infected in 2011, up from 1 million in 2010.25
So how do we stop the spread of HIV around the globe? Part of the answer
involves ethics. Should we attack behaviors or viruses? Use nonmoralistic education
or moralistic condemnation? Spend money on education? Buy cheap anti-AIDS
drugs when the numbers infected keep doubling? When many lack clean water?
Should we triage countries with masses of infected people that are hopelessly cor-
rupt, concentrating where we can save the most lives? These questions will concern
us for the rest of this chapter.
The following section sketches four views of how to stop AIDS, including
exchanges between proponents of these different views.
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 355
Educational Prevention
Ultimately, nonmoralistic education is humanity’s only hope of preventing HIV.
Self-interested humans can learn to protect themselves against HIV by negotiating
safe sex, using clean needles, avoiding infected blood, and taking antiretroviral
drugs to prevent infection of newborns.
Cynics deride education, but it has worked. Between 1990 and 2010, new infec-
tions in the developed world declined. Blood became safe in developed countries,
people used condoms, and mothers stopped HIV from infecting their babies.
Needle exchange programs (NEPs) prevent the spread of HIV by giving drug users
a clean needle and syringe each time they inject drugs, eliminating the need to share
contaminated syringes. One study in New Haven, Connecticut, achieved a 33 percent
reduction in HIV transmission by giving out clean needles to at-risk persons. A 1992
study by the CDC of 23 NEPs showed that they caused no increase in drug usage.
In the late 1980s, Thailand modeled how to arrest HIV. With a national cam-
paign for 100 percent use of condoms, it advertised on television, hired outreach
workers, ran testimonials by its royal family, and educated its sex workers, drug
users, and citizens in preventing HIV infection. Allowing free access to testing and
counseling, it protected the infected against discrimination. Giving out free AZT, it
allowed production of generic anti-AIDS drugs for the poor. Over the next decade,
new infections dropped 80 percent, preventing 200,000 HIV infections.26
During the 1990s, similar efforts worked in Uganda. Led by President Yoweri
Museveni, Uganda ran testimonials on television by famous Ugandans diagnosed
with HIV. Infection rates among Uganda’s youth dropped dramatically. In rural
areas, rates dropped by half and by two-thirds among urban, pregnant women.
Brazil shows surprising success in using education to prevent HIV infection.
Like Cuba, Brazil has a large commercial sex industry for both its citizens and
tourists, so in 1990, its large cities had high rates of HIV infection. In 1996, the
Brazilian government funded universal access to the best anti-AIDS drugs, creating
a national system of outpatient centers, local manufacture of generic anti-AIDS
drugs, sophisticated labs, and record keeping. As a result, Brazilian deaths from
AIDS dropped by half, and rates of infection in São Paulo and Rio de Janeiro
dropped by 54 and 73 percent, respectively.27 Cuba has free medical care, contact
tracing, virtually mandatory treatment programs, and, despite its sex industry, “the
world’s smallest epidemic” of HIV infection.28
Brazil’s huge population means this program is a great success. Although both
Brazil and South Africa have similar middle-class economies, Brazil’s efforts at edu-
cational prevention fared much better. Education and prevention do work, given
the will and funding. One country led, the other denied that HIV caused AIDS.
Feminism
The key to stopping AIDS is empowering women to prevent themselves from get-
ting infected. Women must be enabled to vote, to earn money, and to reject domes-
tic violence.
HIV is a curse on millions of women and children. Nearly half of 33 million
humans on the globe living with HIV are women of reproductive age, and almost
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356 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
all the 2 million children living with HIV were infected during pregnancy, birth, or
breast-feeding.29
A noted physician-fighter against AIDS for 25 years concluded his 2006 review
of this disease with these words: “The prime mover of the epidemic is not inade-
quate antiretroviral medications, poverty, or bad luck, but our inability to accept
the gothic dimensions of a disease that is transmitted sexually. Only if we cease to
dodge this fact will effective HIV-control programs be established. Until then, it is
no exaggeration to say that our polite behavior is killing us.”30
The “gothic dimensions” of AIDS include the fact that men around the world
infect millions of women and children, that soldiers use mass rape as a weapon,
that women and children are sold into sexual slavery, and that poor, powerless
women cannot refuse sex from their more powerful, infected husbands.
Consider the case of 13-year-old Rhaki in Rajasthan, India:
From a poor, rural family, Rhaki had an arranged marriage at age 13 to a 23 year-
old man who worked in the distant city of Mumbai for 11 months of the year. Once
a year, her husband returned for a month, during which time he had sex with her.
While he lived in Mumbai, he had sex with prostitutes and became HIV+. At age 19,
she learned that she and her 2-year-old son were HIV+.
Despite the fact that she remained faithful to her husband and used no drugs,
she was blamed for bringing shame into her family. She feared she would be ejected
from the family and forced to become a prostitute in a distant city.31
In Namibia, one study found that 95 percent of 1,000 women were forced in
their first sexual encounter.32 A third of women in Sierra Leone reported the same.
In sub-Saharan Africa, with two-thirds of the world’s HIV infections, 60 percent of
those infected are women.33 Of those newly infected and aged 15–24, a whopping
77 percent are women.
Bad motives cause this pattern. Some African men perceive that sex with a
young girl is unlikely to infect them with HIV, and some believe that sex with a
virgin will cure HIV. These practices ensure that many teenage females will become
infected.
In South Africa, India, and around the world, an amplification system exists
that involves truck drivers, mobile soldiers, and commuting workers. India’s new
diamond-shaped interstate allows millions of truck drivers to transport commodities
from rural areas to cities and ports. Along the way, drivers patronize prostitutes,
become infected, and then infect their wives at home, resulting in infected babies.
South Africa’s migratory pattern built up over a century, with millions of men
traveling to distant mines and being housed in dormitories. Such patterns dramat-
ically increase nonmarital sex. In Abidjan, the richest city in the Ivory Coast,
migrants compose 40 percent of the city’s population, and this city has the highest
incidence of HIV in West Africa.34
Despite efforts of the United Nations and Christians to stop it, human slavery
still exists in parts of northern Africa. In India, Eastern Europe, Mexico, and Korea,
young women are tricked, kidnapped, and sold into distant brothels, where they
become sex workers, living like slaves.
In Bosnia-Herzegovina, soldiers raped as many as 50,000 women to make them
pariahs. In East Timor, the Congo, Rwanda, Azerbaijan, and Uganda, rape became
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 357
not only a spoil of war but also a weapon in it. In Somalia and Darfur, marauders
raped thousands of women and expelled them from their homes.
These are terrible human acts. We cannot remain neutral against such appalling
acts. We cannot merely pursue bland education and sanitized programs in public
health. Slavery of all kinds must end. Mass rape must end. Forced sex must end.
Triage
In some parts of the world, bad behavior is entrenched. Doctors cannot bring peace to
warring countries; this is not a medical problem but a political one. Similarly, physicians
cannot end slavery or famine; these are larger problems than medicine can solve. Some
countries such as Angola have corrupt governments going back 100 years. It is naïve
to think that do-gooder missionaries and loving physicians can change much there.
We need to triage countries such as South Africa, where President Mbeki for
a decade publicly resisted the fact that HIV causes AIDS and where he not only
did not lead the fight against spread of HIV but also helped to spread it by his poor
example. Angola, Libya, Iraq, and Somalia are lost, failed states, so triage dictates
ignoring them.
Pouring money and time into some countries is a waste. The point of triage is
to intervene to change at-risk lives into saved lives. So, we should ignore countries
that don’t need our help (North America, Europe, Thailand, Uganda) and ignore
countries where nothing we do will make a difference. We should focus on countries
in the middle, perhaps India, where politicians lead and where people can change.
Similarly, if people don’t care for their own safety, education and counseling will
go only so far. After thirty-five years, most adults on the planet know that having
unprotected sex, getting a blood transfusion, or sharing needles can get you infected
with HIV. If your own self-interest doesn’t protect you now from HIV, more educa-
tion certainly won’t.
Besides, as one expert gripes, most AIDS education is bland and generic, and
hence of little value in teaching teenagers. It doesn’t teach them how to negotiate
usage of condoms during sex or how to safely use hard drugs. “We lack the political
will to implement these things,” he says.35
For most people, primal drives for sexual pleasure, fueled by poor judgment
under the influence of alcohol and other drugs, tempt them to engage in unpro-
tected sex. In Russia and Asia, despair over the conversion to capitalism has fueled
widespread prostitution and use of alcohol.
All these forces swamp educational efforts to stop AIDS. Wisdom lies in recog-
nizing that we can’t control the private actions of most people.
Survivors will be fastidiously aware of what behaviors can kill them and teach their
children to be similarly aware. Maybe 1 billion people may die from AIDS, but the other
6 billion will go on. Plagues, flu, and floods have wiped out similar millions before, but
humanity has survived. Sadly, such deaths involve humanity’s Darwinian evolution.
Structuralism
Activist groups such as Paul Farmer’s Partners in Health emphasize that the cause
of the spread of AIDS is not irresponsible personal behavior but unjust structures
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358 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
of society. Education and prevention will never work until these structures change.
Prevention is mere window dressing, feminism focuses wrongly on moralism, and
triage just breeds despair.
As some structuralists lament, “Obviously it is simpler to blame the victims for the
rapid spread of AIDS in poor countries than to analyze the socioeconomic and political
structures that underlie, frame, and often predetermine such personal ‘choices.’ ”36
What evil structures? For starters, poverty, colonialism, apartheid and its legacy,
racism, class injustice, and imperialism. Anthropologist Philippe Bourgois argues that
in poor communities, lack of good jobs emasculates men who want to be good pro-
viders, who then turn to self-destructive behaviors out of frustration—using drugs,
selling them, addicting women, and using violence to control others. Feminism for
Bourgois ignores the “objective, structural desperation of a population without a
viable economy.”37
Poverty is a major cause of the spread of HIV infection. In the 1990s, thousands
of dirt-poor farmers in China’s Henan province sold their plasma each week. They
did so because they could not earn a good living by farming but could do so by
selling plasma. Plasma is collected by taking blood from the donor’s body, separating
the plasma, and returning the rest of the blood to the donor. In this way, donors
can give weekly rather than once a month, with whole blood.
Because the province’s blood supply became infected with HIV, most of the
donors became infected. Whole villages were wiped out. Moreover, because of the
secrecy of the Chinese government, we have no idea how many Chinese patients
received infected blood, plasma, or clotting factors. Millions of Chinese could be
infected and not suspect it.
Too much of the world adopts the approach of “it won’t happen here.” As Kent
Sepkowitz bemoans, “For the past 25 years, the lessons learned about HIV preven-
tion and control in one country have failed to inform decisions in others. As a result,
the world has witnessed a slow-motion domino effect, as the disease overwhelms
country after country.”38
Leaders always deny that AIDS endangers the country (our blood is safe; we
don’t have prostitutes) and then, when cases of AIDS surface, those who are infected
are blamed as deviant or foreign. Sepkowitz continues, “This sort of buck passing
has delayed the control of AIDS in every country. By the time they finally appreciate
the scale of the problem, they face a mature epidemic and the cost of lives and
money has increased exponentially.”
The connection between the spread of AIDS and structuralism may be put
conceptually: An unjust structure is an amplification system for HIV. Women turn to
prostitution to survive, male manual laborers use drugs to endure semi-slavery, and
poor hygiene and public health lead to diseases creating sores and infections, mak-
ing HIV easier to transmit.
Replies and Rebuttals
Feminism Replies. The key to stopping AIDS is to create social structures that
empower women.
Poor women around the world shoulder the burden of AIDS. Such women
know they are at risk but often can do little to protect themselves. Bearing the
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 359
paycheck, and hence food and clothing and other goods of life, men control these
women. We will only stop AIDS when we give these women more say over voting,
jobs, and sex.
Vaccines, vaginal gels, and female condoms need technological breakthroughs
to be effective and one day may be so. In the meantime, women must be allowed
to say “No” to abusive infection by males and forced sexual slavery. Unless struc-
tures are created to avoid infection, AIDS will continue to spread and kill.
Although unfashionable, isn’t old-fashioned feminism better than triaging 20
million people and forgetting about them? At least, feminism directed at people
says that someone cares about them (versus the belle indifference of triage).
Structuralism is partly correct in that many of the evil structures of the world
lead to the abuse, rape, killing, and HIV infection of women, but we can help
women without having a complete revolution in every society. Realistic change may
need to be step-by-step rather than cataclysmic.
Thus, basic rights for mothers, daughters, and wives can be implemented in
small, faith-based communities, such as where clergy wield power in African vil-
lages. Money, food, and supplies, combined with faith and goodwill, can model
sex-only-within-marriage. Such an approach will also combat slavery and sexual
exploitation of women and children and be compatible with conservative
religions.
Secular public health proposals that emphasize education may be inappropriate
for faith-based, poor communities, where many people are illiterate and ignorant
of the most basic scientific facts. Because AIDS is lethal and because a person who
gets infected only once gets this lethal disease, such populations cannot wait to be
taught to read or to be taught basic science. They need a solution now, and feminism
is the answer.
Educational Prevention Responds. Educational prevention rejects the moralism of
feminism and structuralism. First, what’s wrong with feminism in public health is
that it really serves the emotions of the moralizer, not the one condemned. Moral-
izing did nothing to stop gay men from having sex after AIDS was discovered, but
fear of death did. Moralizing only made matters worse.
The key claim is that feminism can change behavior. Is that true? One argument
that it won’t is that a lot of tough love has already been directed against using drugs,
much less intravenous drugs. Similarly, a lot of moralism has been directed toward
not having sex outside marriage, but has it worked?
If we execute men who infect their wives, who will bring home a paycheck to
feed the wives? And feed the children? Execution sounds like a good idea, but if
thought through, it’s not. Seeing what would happen to their men, wives would
protect their husbands and not turn them in to authorities.
For workers in public health, triage is too pessimistic. Why not generalize that
attitude and let everyone starve? Or go without penicillin? Why bother about the
rest of the planet at all? Why not let the undeveloped world fight it out among itself
and let the rich nations keep it at a distance? Just stay in your hot tub enjoying the
scenery and sipping your wine.
But is this a moral point of view? What does the Golden Rule enjoin us to do?
Triage does not offer the world a moral solution; it gives up on finding one.
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360 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
The essence of medical morality is to fight pragmatically for the good of the
many, especially the tools of medicine. If we give up on that assumption, we might
as well give up on medicine.
Triage Replies. The champion of triage replies, “You’re right. If there are 7 billion
people now on the planet and if a billion of them die of AIDS, mostly on the other
side of the planet and unknown to me, I don’t care. The planet already has too
many people and it could easily lose a billion. When stories about AIDS appear on
the news, I change the channel. In fact, to avoid such stories, I don’t even watch
the news anymore.”
“Yes, I may be morally deficient, but at least I have enough moral honesty to
admit that I have no moral feelings of compassion, shame, or outrage about the
mass of human deaths from AIDS. It’s going to happen: it’s a fact; it’s accelerated
Darwinian evolution; I don’t think governments or missionaries can do anything
about it; that’s just the way it is.”
Structuralists like economist Jeffrey Sachs argue that if Western nations trans-
ferred $150 billion a year to developing nations, by 2025 poverty could be wiped
off the planet. Singer Bono has jumped on this approach. But will simply transfer-
ring money end poverty? And will ending poverty stop the spread of AIDS?
William Easterly, a senior research economist at the World Bank, in White Man’s
Burden criticizes humanitarian planners who impose their own solutions on devel-
oping countries, especially the idea that building infrastructure with foreign aid will
end poverty.39 Too many programs are funded top-down, with no feedback from
poor people. Paul Theroux agrees, criticizing celebrities such as Bono who fly in for
dramatic quick fixes and ignore problems that Africans must solve themselves.40
With AIDS, Easterly argues that more life years could be saved by not diverting
money from antimalarial programs and childhood vaccinations and by fighting ordi-
nary scourges such as tuberculosis. A million people still die each year from malaria
in Africa.
Second, Easterly urges the West to focus on prevention rather than cure, espe-
cially by giving out condoms rather than giving the infected expensive AIDS
medicines.
Third, children starve while the parents get antiretrovirals. HIV takes almost a
decade to make people sick. One infected woman said she didn’t need the medi-
cines but a job to feed her family.
Finally, some countries may be hopeless. Twenty years ago, LiveAid concerts
raised $100 million for Ethiopia, but little changed, and today, Ethiopia is among
the most ravaged countries on earth.
Educational Prevention Once Again. The champion of educational prevention also
rejects the cynicism of triage. Both triage and feminism sound like solutions, but
they are not. In fact, they serve the interests of those who espouse them, not the
interests of the world’s vulnerable women and children.
Triage would have us not offer expensive treatment to those infected but instead
concentrate on preventing new infections. In 2006, the standard of care for HIV
infection became HAART, Highly Active Antiretroviral Therapy, which costs $10,000
a person per year in developed countries and which 90 percent of HIV-infected
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 361
people in the world do not get. Studied initially in infected patients at UAB41 and
elsewhere, HAART helped change HIV infection from a death sentence to a chronic,
livable condition.
The key argument for offering HAART treatment at all in certain countries is that
it gives people a reason to get tested. When Brazil offered HAART free to all its citizens,
testing for HIV accelerated and thousands came forth for treatment. Without the offer
of free treatment, how many would have gotten tested? By 2016, two new ways have
been developed to empower women in developing countries at risk for HIV. The first
was oral PrEP, a daily, antiretroviral drug that blocks transmission of HIV, and a
dapivirine vaginal ring that releases antiretroviral drugs over many years. Allowing
such women to access these drugs allows them some control over whether they will
get infected with HIV and is a gigantic step in the right direction.
Triage is not an option in bioethics. Let’s call it what it is: global medical
apartheid.
Progress
In the past 10 years, remarkable progress has occurred in slowing AIDS.
Whether the approach is feminism, educational prevention, or structuralism,
and given different religious backgrounds, provincial leaders, and scientific under-
standing, some of these approaches work better in, say, Brazil than, say, Botswana.
And some of them really have worked.
Since 2001, the Global Fund to Fight AIDS, Tuberculosis, and Malaria and the
Doha Agreement, allowing poor countries to buy or make generic anti-AIDS drugs,
have worked to support the most effective prevention and treatment.
Prevention can work. In North America, prevention has dropped mother-to-
child transmission from 1,300 a year in 1992 to 100 a year in 2002 and NEP and
changing patterns have dropped infections by drug use 80 percent.42 In Africa, the
exponential growth of HIV infection has been checked, mother-to-child transmis-
sion has dramatically dropped, and the number of HIV-infected Africans getting
antiretroviral drugs has increased from 50,000 to over 5 million.43
To its credit, the administration of George W. Bush helped victims of AIDS,
and billions of U.S. aid poured forth. Seeing that otherwise huge economies might
be destroyed, the World Bank also poured money into AIDS prevention. A similar
threat to world security galvanized developed nations to respond. These efforts
prevented millions of new infections and allowed millions of HIV-infected people
to live, especially women, who in turn support millions of children.
In 2011, two new studies proved that uninfected women could be protected
from acquiring HIV by taking a combination of daily, antiretroviral drugs.44 In “dis-
cordant” couples, where one was infected and the other was not, those who took
the pills faithfully had as high as 90 percent protection.
Today, the best approach combines treatment and prevention: HAART for those
infected, and for those at risk, antiretrovirals drugs, education, and microbial gels.
Using this approach, the rate of new HIV infections around the world between 2001
and 2008 fell by 17 percent.45 It is encouraging news that people with early infec-
tions who immediately start antiretroviral medicines are 96 percent less likely to
pass on the virus.46 Even more amazing, 14 patients and a baby who started such
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362 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
drugs immediately after infection have been virtually cured of the typical effects of
HIV infection.47 Several other HIV-infected patients receiving other treatments
obtained “cures,” defined as the point where HIV could no longer be detected in
their bodies.48
Finally, some of the most impressive successes come in small packages: a stamp-
sized paper test for HIV, usable in remote villages;49 grouping HIV people in cohorts
of six, allowing them to share trips to distant clinics for drugs and support one
another;50 the Mother-Baby Pack for HIV-infected pregnant women, which sends
them home from clinics with antiretrovirals and vitamins.51 These interventions
show that pragmatic, good people can save the lives of infected humans and, per-
haps, prevent this deadly virus from infecting another 30 million.
Ethical Issues in Preparing for Future Pandemics
Famous New York Times physician-journalist Lawrence K. Altman once thought in
1980 that all infectious diseases had been discovered. Then came AIDS in 1981,
followed by methicillin-resistant Staphylococcus aureus (MRSA), cholera in Haiti,
H5N1 (bird flu), West Nile virus, SARS, Ebola, and Zika.
In the spring of 2003, SARS, which originated in China, began to spread by
coughing airplane passengers. A Canadian woman in February infected 257 in the
Toronto area, which resulted in a second wave of infections from an orthopedic
ward of a Toronto hospital, infecting another 361 people. Panic ensued and alto-
gether 5,000 Canadians underwent voluntary quarantine in their homes. For a few
months, sick Asians in Toronto were highly stigmatized.
Singapore, with a more authoritarian government, involuntarily quarantined
8,000 people whom SARS patients had contacted but did compensate them for lost
income (which Canada did not, resulting in widespread noncompliance). In May,
FIFA moved the Women’s World Cup from China to the United States.
In late 2013, Ebola viral disease—long thought to be almost eradicated—broke
out in Guinea and, due to poverty, lack of functional health systems, and break-
downs after war, quickly spread to Liberia and Sierra Leone. The disease became
epidemic, quickly killing 60–70 percent of those infected in horrible ways. Lack of
proper equipment and training of nurses and doctors, as well as traditional funeral
practices, spread the disease further.
All of which mattered little to the West until an infected African fled to a hospital
in Houston, Texas, where he infected two nurses who were unaware of his condition.
He died and the hospitals quarantined the nurses, who were treated in special units
at NIH and Emory. Another American, a physician treating Ebola in Africa, also
became infected and was treated similarly in quarantine. The media provided satura-
tion coverage of American cases. Like previous fears of gay men and IV-drug users,
Americans for awhile were paranoid of any coughing Africans entering the country.
Obviously, exceptionalism did not occur with SARS and Ebola. Between 1981
and 2016, much has changed, including the influence of the World Wide Web and
social media. Instead of exceptionalism and denial, the world erred on the side of
caution and quarantine. Through the efforts of heroic doctors and nurses, especially
in Doctors without Borders, Ebola in Africa was eventually curtailed (although it
could break out again).
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Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 363
Bird flu, West Nile, and Zika all are borne primarily by birds and mosquitoes.
All may originate in Asia, where humans and food animals live in close contact,
allowing viruses to jump species barriers. The Zika virus appears to clear the blood
of infected women in two weeks but may last in semen for six weeks. It is spread
by a common mosquito that lives near houses, making no sound and injecting an
anesthetic before it bites. A tiny number of people developed temporary paralysis
after getting vaccinated for swine flu in 1976, and World Health Organization
(WHO) has reported a similar, tiny increase in adults infected with Zika in Tahiti
and South America.
In the spring of 2016, Puerto Rico experienced the most Zika cases of anywhere
in the United States. The warm, wet island contains thousands of abandoned tires,
homes, and uncapped septic tanks. Schools lack screens and air conditioning. The
territory is bankrupt, with thousands of workers laid off and no money for mosquito
repellent. CDC predicts that nearly 1 million Puerto Ricans will get Zika in 2016
and that eventually 80 percent may be infected. As many American tourists travel
to Puerto Rico and Puerto Ricans travel to the United States, they may spread both
the mosquitoes and, sexually, the virus.
All these outbreaks illustrated the interconnectedness of humanity in a world of
fast jets, international food chains, and social media. They also raise questions of
whether the world prepares well for future pandemics, which certainly will occur. The
Presidential Commission for the Study of Biomedical Issues in 2015 recommended
that America financially support WHO in preparing for the next outbreak, identify a
single government official responsible for communicating accurate, timely information
to the public, strengthen the command structure of the U.S. Public Health Service to
respond quickly to a crisis, educate the public to reduce stigmatization of victims, and
isolate those infected with the least restrictive environment.52 In August 2016, history
did not repeat itself for once when the FDA required blood banks to start screening
for the Zika virus, which was likely transmitted in donated blood. Although this
decision may add $8 to the cost of a unit of donated blood, if it saves even a dozen
babies from being harmed by the Zika virus, it will have been worth it.
As this edition of this book went to press, evidence began that Zika infections
in pregnant women may cause damage that does not show up in babies for years.53
Small outbreaks of Zika occurred in the summer of 2016 in Miami and southern
Florida and in some coastal towns in east Mexico. Officials believe that thousands of
Puerto Ricans were being infected each day during the summer of 2016 with many
underreported infected pregnancies.54
FURTHER READING
Alexander Irwin, Joyce Millen, and Dorothy Fallows, Global AIDS: Myths and Facts, Cam-
bridge, MA: South End Press, 2003.
Alexander Irwin, Joyce Millen, and Dorothy Fallows, Global AIDS: Myths and Facts: Tools for
Fighting the AIDS Epidemic, Cambridge, MA: South End Press, 2003.
Anton A. Van Niekerk and Loretta M. Kopelman, Ethics and AIDS in Africa, Walnut Creek,
CA: Left Coast Press, 2006.
Sonia Shah, Pandemic: Tracking Contagions from Cholera to Ebola and Beyond, New York: Farrar,
Straus and Giroux, 2016.
pen07945_ch16_346-366.indd 363 9/8/16 9:52 AM
364 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
Randy Shilts, And the Band Played On, New York: St. Martin’s, 1987.
President’s Commission for the Study of Biomedical Issues, Ethics and Ebola: Public Health
Planning and Response, February 2015.
DISCUSSION QUESTIONS
1. Explain how each of the views on stopping the spread of HIV tends to see the
other four views as part of the problem of spreading HIV.
2. How could blood screening have been screened early in America and France,
where the most public scandals occurred and where these countries had the
resources to screen prevented thousands of deaths from AIDS?
3. How much can education do to prevent the spread of HIV? Are some people
just evil and incapable of being educated to practice safe techniques?
4. How has there always been a trend to blame the victim, whether it’s cholera,
syphilis, or AIDS?
5. Is being gay, lesbian, or intersex a choice or a matter of biology?
6. Do NEP increase drug users or merely make using drugs safer?
7. Why is offering HAART important to motivate people to get tested for HIV?
8. What progress has recently been made in stopping the global spread of HIV?
9. How did responses to SARS and Ebola not result in exceptionalism but its opposite?
NOTES
1. AMFAR, “Statistics Worldwide,” https://www.aids.gov/federal-resources/around-the-world/glob-
al-aids-overview/.
2. Barbara Tuchman, A Distant Mirror, Knopf, New York, 1978, p. 119.
3. B. Hahn, G. Shaw, and F. Gao, “Origin of HIV-1 in the Chimpanzee pan troglodytes troglodytes,”
Nature 397 (February 4, 1999), pp. 436–441. The authors also offered proof that the three major
phylogenetic groups of HIV-1 (M, N, and O) arose from three independent transmissions to man
of simian immunodeficiency virus, SIVcpz, which they hypothesized had existed in chimps for
hundreds of thousands of years.
4. Centers for Disease Control, “HIV/AIDS,” http://www.cdc.gov/hiv/.
5. Donald McNeil, “Study Dates HIV Ancestor to At Least 32,000 Years Ago,” New York Times, Sep-
tember 17, 2010, p. A4.
6. Ibid.
7. Phil Tiemeyer, Plane Queer: Labor, Sexuality, and AIDS in the History of Male Flight Attendants, Uni-
versity of California Press, Berkeley, CA, 2013.
8. Greg Dixon, “Stop Homosexuals before They Infect Us All,” USA Today, January 16, 1983.
9. “Television evangelists Jerry Falwell and Pat Robertson, two of the most prominent voices of the
religious right, said liberal civil liberties groups, feminists, homosexuals and abortion rights sup-
porters bear partial responsibility for Tuesday’s terrorist attacks because their actions have turned
God’s anger against America.” From John F. Harris, “God Gave U.S. ‘What We Deserve,’ Falwell
Says,” Washington Post, September 14, 2001, p. C3.
10. Charles Stanley, quoted in Scripps-Howard News Service, Birmingham Post-Herald, January 21, 1986.
11. Interview on Cross Fire, CNN, November 16, 1987.
12. Quoted in Randy Shilts, And the Band Played On, St. Martin’s, New York, 1987, p. 311.
13. Jonathan Lieberson, “The Reality of AIDS,” New York Review of Books, January 16, 1986.
pen07945_ch16_346-366.indd 364 9/8/16 9:52 AM
http://www.cdc.gov/hiv/
https://www.aids.gov/federal-resources/around-the-world/glob-al-aids-overview/
https://www.aids.gov/federal-resources/around-the-world/glob-al-aids-overview/
Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases 365
14. This periodical never apologized for these inaccurate pieces or to giving so much editorial power
to an ideological graduate student.
15. Margaret Heckler, quoted in Shilts, And the Band Played On, p. 345.
16. Joseph Bove, quoted in Shilts, And the Band Played On, p. 345.
17. Ibid.
18. The CDC website on HIV, http://www.cdc.gov/hiv/basics/livingwithhiv/.
19. John Boswell, Christianity, Social Tolerance, and Homosexuality; Gay People in Western Europe from the
Beginning of the Christian Era to the Fourteenth Century, University of Chicago Press, Chicago, 1980.
20. 539 U.S. 558 (2003), http://www.law.cornell.edu/supct/html/02-102.ZS.html.
21. Larry Kramer, “Who Says AIDS Is Hard to Get?” Newsweek, 1992.
22. Nick Wadhams, “World Falls Short on AIDS Goals, U.N. Warns,” Birmingham News, June 2, 2006,
p. 4A.
23. Robert Steinbrook, “The AIDS Epidemic: A Progress Report from Mexico City,” New England Jour-
nal of Medicine 359, no. 9 (August 28, 2008), pp. 886–887.
24. Figures on AIDS in Africa and worldwide are notoriously vague and political. See Alan Whiteside,
“AIDS in Africa: Facts, Figures and the Extent of the Problem,” pp. 1–15 in Anton A. Van Niekerk
and Loretta M. Kopelman, eds., Ethics and AIDS in Africa, Left Coast Press, Walnut Creek,
CA, 2006. According to the World Health Organization, 37 million people live with HIV as of
August 23, 2016, http://www.who.int/hiv/en/.
25. “A Global Menace,” Newsweek, May 15, 2006, p. 52.
26. Alexander Irwin, Joyce Millen, and Dorothy Fallows, Global AIDS: Myths and Facts, South End Press,
Cambridge, MA, 2003, p. 52.
27. Ibid., p. 55.
28. Donald McNeil, “A Regime’s Tight Grip on AIDS,” New York Times, May 8, 2012, pp. D1–4.
29. Marc Lallemant, “Preventing Mother-to-Child Transmission of HIV—Protecting this Generation and
the Next,” New England Journal of Medicine 363, no. 16 (October 14, 2010), p. 1570.
30. Kent Sepkowitz, “One Disease, Two Epidemics—AIDS at 25,” New England Journal of Medicine 354,
no. 23 (June 8, 2006), pp. 2413–2414.
31. The case is taken from Irwin, Millen, and Fallows, Global AIDS, pp. 21–22.
32. Ibid.
33. Michael Merson, “The HIV-AIDS Pandemic at 25—The Global Response,” New England Journal of
Medicine 354, no. 23 (June 8, 2006), p. 2414.
34. J. Decosas et al., “Migration and AIDS,” Lancet 346, no. 8978 (1995), pp. 826–228; quoted in Irwin,
Millen, and Fallows, Global AIDS.
35. Jeffrey Fisher, quoted in L. A. McKeown, “Preventing AIDS in the Next Generation,” WebMD
Medical News, December 1, 1999.
36. Quoted in Irwin, Millen, and Fallows, Global AIDS, pp. 21–22.
37. Philippe Bourgois, “In Search of Horatio Alger: Culture and Ideology in the Crack Economy,” in B.
Rienarman and H. Levine, eds., Crack in America: Demon Drugs and Social Justice, University of
California Press, Berkeley, CA, 1997.
38. Sepkowitz, “One Disease, Two Epidemics,” p. 2413.
39. William Easterly, White Man’s Burden: Why the West’s Efforts to Aid the Rest Have Done So Much Ill
and So Little Good, Penguin, New York, 2006.
40. Paul Theroux, Dark Star Safari, Houghton Mifflin Harcourt, New York, 2003; Paul Theroux, Last
Train to Zona Verde, Houghton Mifflin Harcourt, New York, 2013.
41. S. K. Ghosh , M. E. Taylor , V. A. Johnson, E. Emini, P. Deutsch, J. D. Lifson, … G. M. Shaw, “Viral
Dynamics in Human Immunodeficiency Virus Type 1 Infection,” Nature 373 (1995), pp. 117–122.
42. Donald McNeil, “New HIV Cases Remain Steady Over a Decade,” New York Times, August 4, 2011, p. A16.
43. Sheryl Gay Stolberg, “College Campuses Are Producing a New Style of AIDS Activist,” New York
Times, December 1, 2000, p. A14.
pen07945_ch16_346-366.indd 365 9/8/16 9:52 AM
http://www.cdc.gov/hiv/basics/livingwithhiv/
http://www.law.cornell.edu/supct/html/02-102.ZS.html
http://www.who.int/hiv/en/
366 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases
44. Donald McNeil, “Two Studies Show Pills Can Prevent HIV Infection,” New York Times, July 14, 2011,
p. A15.
45. “Waltzing with Death,” The Economist, July 24, 2010, p. 77.
46. Donald McNeil, “Early Therapy for HIV Said to Cut Spread,” New York Times, May 13, 2011, pp. A1–3.
47. Editorial board, “A Cure, in Essence, for H.I.V. in Some Adults,” New York Times, March 18, 2013.
48. Andrew Pollack, “New Hope for a Cure of H.I.V.,” New York Times, November 29, 2011, pp. D1–2;
David Brown, “Baby Born with HIV Is Apparently Cured with Aggressive Drug Treatment,” Wash-
ington Post, March 3, 2013, p. A1.
49. Donald McNeil, “Far from Any Lab, Paper Bits Find Illness,” New York Times, September 27, 2011, p. D1.
50. Celia Dugger, “Sharing Burden of Living with AIDS,” New York Times, September 27, 2011, p. D1.
51. Nicholas Bakalar, “Drugs to Curb a Deadly Inheritance,” New York Times, September 27, 2011, p. D6.
52. Donald McNeil, “Puerto Rico Braces for Its Own Epidemic,” New York Times, March 19, 2016.
53. Pam Belluck, “Brain Scans of Brazilian Babies Show Array of Zika Affects,” August 23, 2016,
New York Times, p. A1.
54. Donald McNeil, “Zika Cases in Puerto Rico are Skyrocketing,” New York Times, July 30, 2016, p. A1.
pen07945_ch16_346-366.indd 366 9/8/16 9:52 AM
C H A P T E R 1 7
Ethical Issues of the Patient
Protection and Affordable
Care Act
This chapter discusses ethical, political, and historical issues surrounding finance
of medical care in the United States and Canada. It discusses ethical issues about
the new Patient Protection and Affordable Care Act (PPACA), intended to provide
affordable medical care to all Americans, and objections to it during the six years
of its operation.
ROSALYN SCHWARTZ
In 1987, Rosalyn Schwartz, age 47, lived in Ridgefield, New Jersey, and had one
child, Andy. Divorced, she lost medical coverage she had previously held through
her husband’s job.1 The gift-wrap company where she worked with five other
employees, each making $19,000 a year, did not provide medical coverage.
Because she had a preexisting condition, an ulcer, when Rosalyn tried to buy
coverage, companies offered her only policies that excluded treatment for ulcers
and that still cost $4,000 a year, more than she could afford.
In 1988, physicians found a small lump in her breast that might have been
cancerous and recommended its removal, but having no coverage, Rosalyn post-
poned its excision. Unfortunately, cancers are cells gone wild, so they must be
excised and radiated immediately before they spread to bones and organs.
In 1989, Rosalyn felt pain tear through her hip. By then her cancer had metas-
tasized, making her bones fragile. When she fell to the floor, her hip socket shat-
tered. In the ambulance, she sobbed. “Andy, you’ve just turned 18. Tell them [at the
hospital] I have no insurance. But don’t sign anything or you’ll be responsible.”
Hospitalized for 23 days, Rosalyn had three surgeries, costing $40,000, half paid
by charity. Rosalyn owed the rest to 12 physicians and two hospitals, each of whom
she paid $10 a month.
Unable thereafter to work, Rosalyn received disability under Medicare for
$10,500 a year. Attempting again to get medical coverage, she found it would not
cover her ulcers or cancer and would still cost her $4,000 a year. Declining such
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368 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
coverage, she then forwent physical therapy as well as bone scans every six months
to check whether her cancer had returned.2 In 1999, 12 years after her diagnosis
and at age 59, Rosalyn died.3
Universal Medical Coverage
Universal medical coverage supports basic medical care for all citizens. One form is a
single-payer system administered by one organization. Most developed countries pro-
vide universal medical coverage, including Austria, Belgium, Denmark, Finland,
France, Germany, the Netherlands, Norway, Portugal, Spain, Sweden, the United
Kingdom, Australia, Canada, Cuba, Japan, New Zealand, South Africa, and
Taiwan.
One form of universal medical coverage is mandated multi-plan coverage, where
every citizen must purchase some form of medical coverage, either from a private
or public plan. Usually, a government agency regulates all plans.
1962 to Present: Canada
Starting in 1962, Canada funded national medical care, much like Social Security
in America. Its plan covers every Canadian and all medically necessary services. It
is universal, portable (transferable between jobs), and publicly administered.
General taxes fund the system, including stiff taxes on cigarettes, alcohol, and
gasoline. As in England, each province regulates its supply of services, a situation
that leads to frustration among physicians who get licensed easily in one province
but never in another.
Canadian physicians can order routine tests for their patients. They do not need
permission from a gatekeeper in a managed care plan.
Canadian physicians do not work for the government. Like American physi-
cians, Canadian physicians work for themselves and bill on a fee-for-service basis.
However, Canadian physicians cannot collude to raise fees.
Between 1990 and 2010, the Canadian system cost $4,445 American dollars per
capita and covered all Canadians; the American system cost $8,233 per capita and
left 46 million uncovered.4
Canadians live to about age 80, Americans to about 77. Every pregnant Canadian
woman gets free care, so Canada has one of the lowest infant morality rates of
developed countries. In the United States, only 17 percent of pregnant women have
similar coverage.5 All Canadians can purchase reasonable, long-term care in nursing
homes. In the United States, few people can do so.
To control costs, Canada limits the number of specialists. Between referral and
first appointment, Canadians wait weeks to see dermatologists, ophthalmologists,
oncologists (5.5 weeks), and orthopedic surgeons (40 weeks).6 Canada also limits
the number of expensive machines, such as CT scanners.
The Canadian system doesn’t cover everything. While paying most costs of
hospitalization or physicians, it pays little for nonhospital drugs, dentistry, or vision
care.
In 2005, Canada’s Supreme Court overturned a crucial law that had allowed
Canadians to buy (or physicians and private insurers to sell) essential medical
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 369
services.7 Before the Court struck it down, surgeons at Vancouver’s Cambie Surgery
Centre performed knee surgeries for cash on wealthy patients, without the usual
two-year wait.8
The Canadian system is not perfect. Because provinces possess so much power,
physicians can be frustrated by inconsistencies between provinces, lack of national
rules, and inefficient allocation of specialists and generalists.9
The National Health Service in England
The National Health Service (NHS) of the United Kingdom began in 1948 after
victory in World War II, and in gratitude to the suffering of the British people during
that war, the government began providing free medical services to all citizens. After
a year of legal residence, immigrants also are covered. The NHS is funded through
general taxation.
Private health insurance is available as a supplement to NHS, and 10 percent
of citizens purchase it. Patients pay more for long-term care, dentistry, eye care,
and some prescriptions.
Beginning in 1972 and strengthened in 1984, Regional Health Authorities
decided how many expensive machines and services to purchase.
The system is massive and has recently suffered problems. These problems
involve waiting times, costs, and accountability for errors.
NHS limits medical services by gatekeepers, typically primary care physicians,
and by priorities, rather than by price or kind of insurance. This leads to waiting
lines in England to see specialists and for elective surgeries.
NHS can be expensive and has had cost overruns. Phase III of Guy’s Hospital
in London, budgeted around £30 million, ended up costing over £150 million.10 Its
attempt to make records digital, originally estimated to cost £2.3 billion in 2004,
had cost £10 billion by 2013 and seems to have been abandoned.11
The NHS has not had great problems attracting physicians to primary care.12
The American Medical System: 1962–2012
Because America lacked a unified system of medical finance for the past century,
explaining how its finance worked is complex. In essence, America had a patchwork
system that covered most serious problems for most people most of the time, but
which also had huge gaps, such as the one that shortened the life of Rosalyn
Schwartz.
In the early 1970s, Republican President Richard Nixon first tried to rein in
costs in medicine through health maintenance organizations (HMOs), a gate-
keeper to determine whether patients would use a specialist or get admitted to a
hospital. The gatekeeper could also be a physician, nurse, or manager for the
plan.13
Since World War II, private insurance plans multiplied to more than 300 com-
panies, each with its own rules, qualifications, reimbursement rates, and forms to
be filled out by patients and physicians.14 For the average physician, two full-time
clerks dealt with billing and insurance.
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370 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
1965: Medicare Begins
In 1965, Congress walked one step toward universal coverage when Texas Democrat
Lyndon Johnson wrangled Medicare into law. Originally aimed at helping poor
seniors during illness, Congress soon extended it to all seniors over 65, dropping
any income requirements.
When Americans reach age 65, Medicare covers about 80 percent of their
expenses for hospitals and physicians. It is a single-payer system run by the federal
government.
Its creation stemmed from the moral premise that healthy, young citizens should
pay for the medical care of sick, elderly citizens. A related moral premise lay behind
Johnson’s Great Society legislation of the 1960s, which created Head Start, food
stamps, VISTA, and Aid to Families with Dependent Children (AFDC).
Medicare gave the elderly a previously unknown security. Before 1965, many
elderly Americans worried whether they could afford physicians and hospitaliza-
tion. Before 1965 and for financial reasons, entering a hospital terrified the elderly.
Medicare also covers about 4 million people with disabilities under age 65, plus
100,000 people on dialysis under the End Stage Renal Disease Act (ESRDA). On its
50th anniversary, Medicare covered 55 million Americans.15
Medicare is financed from mandatory payroll taxes—indicated on paycheck
stubs as Federal Insurance Corporation of America (FICA). Medicare’s budget for
2015 surpassed $600 billion, making it the most costly program of American
government.16
In 2006, a Republican Congress under George W. Bush surprised its critics by
expanding Medicare to cover costs of drugs for seniors on both sides of a “donut
hole,” that is, some initial costs, then a big gap, then all costs after the end of that
gap. Of course, this new coverage increased the national debt and future medical
costs.
1965: Medicaid Begins
In 1965, Americans took a second step toward universal coverage by starting Med-
icaid, also part of Johnson’s Great Society legislation. As a state program covering
medical services, each program in each state under Medicaid operates differently
(a fact that became important with the PPACA), but federal matching funds guide
Medicaid overall and enforce national guidelines.
Medicaid covers medical expenses only for poor people, especially those on
public assistance, children of poor parents, poor seniors, people with disabilities,
and adults with mental illness. (A memory aide: Medicaid aids the poor; Medicare
cares for the elderly).
Eligibility for Medicaid varies by each state. A citizen could qualify for it with
a higher income in California than in Alabama. In New York in 2015, a single parent
with two children could not have resources more than $14,850 or income more than
$1,354 a month and qualify for Medicaid.
What Medicaid covers also varies from state to state. Over the past two decades,
Medi-Cal, MassHealth, and TennCare have covered the most services, and hence
had the most problems with their budgets.
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 371
Medicare does not cover nursing homes or long-term care. Only Medicaid does.
To qualify for such coverage, seniors must exhaust all personal wealth, including
sale of personal homes. To avoid families transferring assets to adult children, Med-
icaid employs the Five Year Rule: In the five years before application for a nursing
home, assets transferred to adult children are counted as a person’s resources.
Medicaid pays for drugs of people with schizophrenia who do not work. Because
most such people take their drugs for life, such drugs are expensive. Like the poor,
people with schizophrenia face a dilemma between (1) not working and getting their
drugs through Medicaid and (2) working a job with poor coverage for mental health
and getting no drugs.
The bailout of 2008 by the federal government of American banks oddly
included the Mental Health Parity Act, requiring insurers to cover mental illnesses
in the same way they cover physical illnesses.17 This act reversed incentives for
people with mental illness not to work, because their insurance would now be
covered by employers.
An especially controversial aspect of American medical finance has been cov-
erage for undocumented, immigrant workers. The Deficit Reduction Act of 2005
forbids Medicaid from covering services for them.
1997: CHIP
Starting in 1997, America took another step toward universal coverage with the
State Children’s Health Insurance Program (sCHIP, where the “s” is a placeholder
for each state, e.g., UtahCHIP). Designed for those who earn too much to qualify
for Medicaid yet are unable to cover their medical expenses for their children,
sCHIP works with each state’s Medicaid program. Under it, children can obtain
checkups, prescriptions, dental work, and eye care, as well as services at hospitals
and by physicians. The first act of Congress under President Barack Obama expanded
sCHIP to cover 4 million additional children (up from 7 to 11 million), paid for by
increasing federal taxes on cigarettes.
Before sCHIP, poor working parents faced the dilemma of going to work, losing
eligibility for Medicaid, and then losing coverage for their children. If they became
unemployed, they (and, hence, their children) became eligible for Medicaid. SCHIP
thus reversed incentives for not working.
Tricare and VA Hospitals
A different medical system covers military personnel, their families, and veterans.
While on active duty, members of the armed services see physicians through
Tricare (formerly called CHAMPUS), which allows them to see military or private
physicians. Tricare is part of the Department of Defense Military Health
System.
Veterans may utilize a national system of hospitals and clinics run by the Vet-
erans Health Administration (VHA), which is not part of the Military Health System
but part of the Department of Veterans Affairs. Founded after World War II in
appreciation to America’s veterans, the VHA is based on the moral premise that no
one who served in the armed forces should later lack medical care.
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372 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
The VA system is the second-largest department of the federal government.
Caring for injuries of veterans of wars in Iraq and Afghanistan has doubled its
budget from $70 billion in 2005 to $140 billion in 2013. Because of costly wars in
Iraq and Afghanistan, and because new medical field units save more of the
wounded and because of concern over care of veterans, President Obama’s budget
for the VA in 2017 soared to 182 billion.18 The VHA employs now more physicians
and nurses than any other American institution. In recent decades, it has shed its
old reputation for shoddy care and emerged as a national leader of good, efficient,
electronic, medical care.19
The VHA covers veterans not only for surgery, drugs, and visits to physicians
but also for mental illness and long-term care in nursing homes. The Armed Ser-
vices runs its own nursing and medical schools and, in return for later service, pays
for students to attend those schools.
1985: COBRA
In 1985, Congress passed Consolidated Omnibus Budget Reconciliation Act (COBRA),
allowing employees to continue medical insurance at group rates for 18 months by
paying their share plus the employer’s share of their former premiums. COBRA also
covers spouses after divorce and adult children.20 Even with COBRA, many employ-
ees cannot afford it because they must now pay for the employer’s former share,
which may have paid for as much as 95 percent of their previous coverage.
1986: EMTALA
Part of America’s medical system is the Emergency Medical Treatment and Active
Labor Act (EMTALA) of 1986, which forbids emergency rooms (ERs) from turning
away patients who are medically unstable. All ER patients, regardless of coverage
or ability to pay, must be stabilized before they are released.
This federal requirement means that ERs serve as a national safety net for the
uninsured and for illegal immigrants. States with large numbers of these patients
face escalating costs for patients treated under EMTALA.
1996: HIPAA
In 1996, the federal Health Insurance Portability and Accountability Act (HIPAA)
required portability for workers between similar plans and banned excluding pre-
existing conditions in such transfers (without this ban, workers with any medical
problem would be trapped in their existing job). It also guaranteed privacy of med-
ical records for patients.
1962–2012: Coverage at Work through Private Plans
Between 1962 and 2012, about half of Americans got medical coverage through
employment.21 This includes their spouses and children (including adult children
up to age 26). Coverage in retirement varies according to the largesse of the employ-
ee’s former employer.
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 373
As a benefit to employees, some employers provide medical coverage. Employers
with many employees can negotiate lower rates than employers with few employees
because they spread costs of illness over more people. So large employers with their
discounts offer the best medical plans.
One disadvantage of employer-based coverage comes from small employers.
Small businesses out to maximize profits do not provide medical coverage to their
employees, in part because employers with fewer than 25 employees pay the highest
rates.
A second disadvantage of employment-based plans is that when workers leave
jobs, medical coverage often ceases. This happened to Rosalyn Schwartz.
A third disadvantage of employer plans is cost shifting. American hospitals are
not reimbursed for providing medical care to the poor in ERs, but EMTALA forbids
them from turning patients away. To compensate for such losses, hospitals charge
large employers more for services for insured patients. Large employers resent such
cost shifting, because it forces them, but not small employers, to subsidize the
indigent. For this reason in Oregon, Vermont, and Massachusetts, large employers
there favored statewide, universal coverage.
A fourth disadvantage of employer plans is that American employers claim the
cost of insuring their employees is too high. In 1990, over $675 of the cost of each
new Ford vehicle went to pay for medical coverage for employees.22
In 2010–2012, small companies employing 20–50 employees often saw costs of
medical coverage jump 20 percent a year.23 In 2011 in New Hampshire, more than
90 percent of employers had fewer than 50 employees, and a single employee’s
monthly premium jumped to $550 from $384 the year before. Because of such high
costs, some employers created a two-class system, with regular employees with good
benefits and part-time employees with no benefits.
A fifth disadvantage of the employment-based system occurs when illness or
injury dislodges workers into chronic unemployment. Many people become poor
because of cancer, schizophrenia, or car accidents, which then makes them unde-
sirable to employers, so chronic unemployment results, trapping them in poverty
and making them dependent on Medicaid and public assistance.
People who are unemployed or who work for a small company that offers no
medical insurance may buy individual policies. About 12 to 15 million Americans
formerly did so, including the self-employed, seasonal workers, adult students, and
people between jobs. But as Rosalyn Schwartz discovered, individual policies are
expensive and may exclude just what is needed. Keeping the same policy for such
people with the same physician became a contested issue under the PPACA.
Blue Cross/Blue Shield and Kinds of Ratings
Prior to the PPACA, private insurers used either community or experience rating.
In community rating, they evaluate risk for a large employer, state, or area and charge
the same to every policyholder in that group. Community rating favors ill people
because they cannot be excluded and healthy people subsidize them. National,
universal medical coverage spreads community rating over an entire country.
Experience rating charged an individual or small business based on previous
illnesses or numbers of employees and so dramatically increased costs for some
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374 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
policies. In extreme cases, insurers maximized profits by selling policies to healthy
young people, who were unlikely to make claims, and by avoiding people who were
sick, old, disabled, or at high risk of accidents—that is, people likely to make expen-
sive claims. For a small business with 35 employees, one employee needing a liver
transplant could make premiums exorbitant for the rest.
During the 1930s, surgeons and physicians founded Blue Cross and Blue Shield
to ensure that patients could pay them after hospitalization for catastrophic condi-
tions. By state law, the “Blues” were nonprofit organizations. As such, they paid no
state or federal taxes.
In return for their nonprofit status, Blue Cross Blue Shield (BCBS) companies
had to adopt community rating, in other words, had to insure everyone who wanted
to be insured. Between the 1930s and the 1960s, things worked reasonably well for
everyone: BCBS insured everyone in a state who wanted insurance and rates
remained reasonable.
In the early 1970s, changes in federal regulations allowed commercial medical
coverage of a new kind to emerge. These companies used experience rating, and
they cherry-picked the healthiest customers, leaving BCBS as the insurer of last resort
for the unhealthiest and neediest customers.24
These factors explain what happened to Empire BCBS in New York in the 1980s:
Commercial companies left it with only the sickest customers, such as those with
AIDS. As a result, Empire BCBS raised premiums for its remaining customers by
100 percent and nearly went bankrupt.
Another target of cherry-picking, Kentucky BCBS, between the early 1960s and
the late 1970s, saw its share of policies statewide drop from 90 to 30 percent. This
helps explain why Kentucky’s adoption of Obamacare in 2013 saw the largest expan-
sion of covered patients of any state.
Some states later made cherry-picking illegal. If a businessman wanted to make
the most money, he would cherry-pick and cover only companies with healthy
young people, for example, those working for Google, who were unlikely to make
claims and with employers who paid most of the premiums. He would not cover
employees at pest-control companies.
People misunderstand “Medical insurance.” Thirty years ago, it meant simply
insurance—a hedge against a dreaded but remote possibility. People then bought
medical insurance hoping they’d never use it. As such, its policies covered catastro-
phes like automobile accidents or diagnoses of cancer.
Gradually, medical policies evolved into prepaid group medical coverage. They
expanded to cover not just catastrophic but all “major medical” expenses. This
was logical: If people would pay small premiums to protect themselves against
catastrophic risks, why not pay somewhat more to protect against common risks?
Thus, insurance grew until it included every medical service, and today, people
complain when their “insurance” doesn’t cover everything, as if that is what the
term means.
Many people mistakenly believe that most Americans without medical coverage
are unemployed. In fact, most Americans without medical coverage work.25 Most waiters
and waitresses lack employer-sponsored medical insurance, as do most workers in
small businesses. Only in case of the rare business that employs fewer than 10 people,
1 in 10 provides medical coverage.26
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 375
Oregon, Vermont, and Massachusetts Cover Everyone
In 1987, Oregon broadened its Medicaid plan to cover 30,000 Oregonians of 90,000
who applied through a lottery for a new Oregon Health Plan (OHP).
OHP did not fund some expensive medical services such as in vitro fertiliza-
tion, experimental therapies for people with AIDS, or heart and liver trans plants.
In 1988, it refused to pay for a bone marrow transplant of 7-year-old Coby
Howard, despite his parents’ appeals to the media, a rare failure of the rule of
rescue.
In 1993, OHP had spent $84 million, but only $34 million had been allocated
for it; overall, it faced a predicted $1.2 billion shortfall.27 In 2003, OHP reduced
benefits and required higher deductibles and co-payments.28 Between 2003 and
2005, two-thirds of its members lost their insurance coverage, and over three-fourths
went uninsured for more than six months. Despite a restoration of some coverage
in 2004, many of those dropped continued to experience problems obtaining med-
ical care. In short, OHP proved too expensive.
Importantly, OHP not only covered hospitalization but also mental, vision, and
dental care, as well as some associated products.
In 2013, Oregon hoped to cover an extra 222,000 people with expansion under
Cover Oregon of Medicaid for the PPACA; the projected extra cost of this expanded
OHP was $217 million. It also found itself compelled to reduce reimbursement to
providers by 11 percent. To its surprise, an extra 150,000 Oregonians signed up,
costing Cover Oregon an extra $100 million.
In 2008, Massachusetts and Vermont cranked up their own systems of uni-
versal medical coverage. As is the case with car insurance, they required every
citizen to have health insurance or lose a tax credit of $209 in 2008, and this lost
credit amount increased substantially between 2009 and 2012.29 Presidential can-
didates and Vermont politicians Howard Dean and Bernie Sanders embraced
these plans.
Where Massachusetts penalized noncompliance, Vermont encouraged its unin-
sured residents to enroll in its Catamount Health. Under it, and for about $500 a
month, families got the same coverage as BCBS, with tiered co-pays for drugs and
the same deductibles.30 On a sliding scale, Vermont subsidized families making up
to 300 percent of the poverty level (about $30,000 for one parent and $60,000 for
a family of four).31
Vermont’s plan recognized that people with chronic conditions (diabetes, heart
disease, obesity, high blood pressure) consumed 80 percent of the medical dollars.
It covered screening, counseling, and prevention for people with these conditions
to try to reduce more expensive interventions later. Employers with more than
10 employees that did not provide medical coverage had to pay the state medical
fund $295 per employee.
In Massachusetts, the poorest residents (making under $10,000) got access to
medical coverage with no premiums and no deductibles. Massachusetts CHIP also
expanded to cover all expenses of children in families up to 300 percent of the
poverty level.32 By 2011, 99.8 percent of children were covered and 98.1 percent of
adults.33 Some patients had trouble finding a primary care physician willing to treat
new patients, some of whom had long postponed care.34
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376 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
Already the state that was spending the most on medical care per resident, in
2009 Massachusetts experienced a budget deficit of $4 billion and sought to rein in
medical costs. As a result of expanded coverage, Massachusetts spent far more than
average on medical care, and at the start of 2016, medical plans in the state were
asking for large increases in premiums to cover soaring costs.35
Both plans are costly. In Massachusetts, Medicaid payments for medical care
went up to $90 million by 2009, about what private insurers formerly paid. One
scholar predicted that working families (who will pay $14,000 a year) won’t be able
to afford it and that the Massachusetts plan will go bankrupt because, like Medicare,
physicians and patients in the plan have no incentives to cut costs.36
Both plans put the lie to the idea that universal coverage must be a government-
run, single-payer system. By cobbling together several plans, Vermont and Massa-
chusetts managed to provide coverage for all citizens.
2010: THE PATIENT PROTECTION AND
AFFORDABLE CARE ACT
In 2010, President Barack Obama signed into law the PPACA, succinctly called the
Affordable Care Act (ACA), the greatest expansion of medical coverage in America
since President Johnson’s Great Society legislation of 1965. Through a combination
of mandates, subsidies, and tax credits to both individuals and employers, the act’s
ultimate goal was to cover all Americans and make medical costs reasonable.
Much drama and politics led up to this event, which eased with the reelection
of President Obama in 2012, squashing attempts to delay implementation of the
ACA. A few months later, the U.S. Supreme Court controversially upheld the con-
stitutionality of the ACA, justifying it not as a mandate to buy coverage by individ-
uals or as a mandate to provide it by employers, but as a tax that could be imposed
on those choosing not to buy coverage. The Court, however, created an important
opening by holding that states need not expand Medicaid to cover everyone, but
instead could form exchanges where individuals could purchase. By 2016, 19 states
had elected not to expand Medicaid and 32 states and the District of Columbia had
actually expanded their Medicaid programs.
The ACA required insurance companies to cover all applicants at the same rates
and not to employ experience rating or to decline coverage for preexisting condi-
tions. By 2013, it had already required employers to carry 6 million young adult
children on family policies until the age of 26, shrunk the “donut hole” for prescrip-
tion drug costs of Part D in Medicare, added 600,000 new Medicaid enrollees in
seven states with expanded plans, and (it claimed) rebated more than $1 billion to
12.8 million consumers on insurance premiums.37
The ACA develops in phases between 2013 and 2018. Various kinds of citizens
(single, married, working, unemployed, retired, etc.) without insurance will pay
more each year between 2013 and 2018 in taxes/penalties. This has been the strat-
egy in Massachusetts, which achieved 98 percent coverage.
Nevertheless, the young will vote with their dollars on the ACA. For example,
in Oregon, for a person making $25,000 a year, penalties for not carrying health
insurance was, respectively, $150, $325, and $695 in 2014, 2015, and 2016.
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 377
FOR AND AGAINST THE ACA
We now discuss arguments for and against the ACA.
Opposing the ACA #1: Illegal Immigrants
The elephant in the room of universal medical coverage is illegal immigrants. In the
fall of 2013, America’s population reached 313 million people, a growth of 100
million people since 1967. About 53 percent of the new Americans were recent
immigrants, and about 11 million were illegal.
Forcing employers to provide medical coverage to illegal workers will break the
bank. If such workers are covered, those with expensive diseases and disabilities
will flock to America. This is what is known in the insurance industry as adverse
selection.
In England, foreign visitors can obtain a National Health System Number when
they need to see a physician. On subsequent visits with this identifying number,
foreign patients can get treatment because English physicians do not want to be
immigration officers and deny services to needy patients, so (according to one for-
mer finance officer for a regional health authority), “Word has gotten ‘round in
Nigeria, Ghana, India, and Pakistan that it is possible to receive treatment on the
UK taxpayer without restraint.”38 This is one reason why so many refugees seek
England as a destination.
Whether hospitals admit illegal immigrants varies in America from hospital to
hospital, state to state. Reimbursement figures show that the largest group of illegal
immigrant patients is pregnant women.39 Consider two hospitals in the Dallas-Fort
Worth area: Parkland Hospital in Dallas does not ask immigrants about their
national status, and pregnant mothers from Mexico flock to it. The hospitals of the
JPS Health Network in Dallas require proof of American citizenship, and hence see
few illegal pregnant women.40
In 2012, California spent over $1.25 billion on medical care for illegal immigrants.
The other top states giving such care were Arizona, Texas, New York, and Illinois.
If children are born in America, hospitals have their births reimbursed by Med-
icaid. The child is then an American citizen, with K–12 public schooling available
to him, as well as other benefits. This is called birthright citizenship.
America cannot afford to open its borders and to give away medical coverage
and jobs to everyone who wants to enter. This is the age-old story, played out long
ago in England in the tragedy of the commons: The owner of each flock increased
the number of sheep he grazed on town land—the commons—until it was so over-
grazed that the grass disappeared and the commons was destroyed.41 Europe may
be facing this problem as it debates how many millions of refugees it can absorb
without sinking its standard of living.
Should we start illegal immigrants on chemotherapy for cancer or hemodialysis
for kidney failure? Once such therapies begin, because of the rule of rescue, they
are difficult to stop. Once they are started for some immigrants, it is difficult not
to do the same for others. But the more such expensive medical services are
bestowed, the greater the incentives for people to slip into America illegally. In
England in 2016, Prime Minister David Cameron sought to scale back benefits for
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378 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
immigrants in his country to appease citizens who wanted England to leave the
European Union.
Vermont, Massachusetts, and Oregon, with their expanded coverage, do not
model the rest of America. How many illegal workers do they have? Vermont is one
of the whitest states (96 percent) in the country and has few jobs that attract immi-
grants. Oregon is 88 percent white. These are not two states experiencing massive
problems with illegal immigrants.
Favoring the ACA #1: Illegal Immigrants
Myths abound about illegal workers. Most Americans do not believe that such work-
ers pay FICA and income taxes, but these taxes are in fact deducted from their pay-
checks.42 In 1996, the Internal Revenue Service (IRS) began issuing identification
numbers to illegal workers to take their taxes. Whether a gangster or an illegal worker,
other authorities may delay dealing with you, but the IRS will not; it demands your
taxes. Each year, half of the 7 million illegal workers use such ID numbers to file
federal and state returns and pay the same tax rates as traditional Americans.43
Anti-immigration advocates claim that illegal workers burden hospitals and
drain resources from traditional Americans. Starting in 1996, reforms to welfare
disqualified illegal immigrants from receiving welfare, food stamps, subsidized hous-
ing, Medicaid, and Medicare.
In 2013, studies led by researchers at Harvard Medical School discovered that
immigrants created a surplus in Medicare of $115 billion, whereas established
Americans created a deficit of $28 billion.44 Most immigrants, legal or illegal, are
young and few are old enough to get Medicare. Moreover, in North America and
England, they do the jobs that ordinary citizens refuse to do, keeping prices low
for harvesting food crops.
The Obama administration promises that illegal immigrants will not break the
bank. On the other hand, reforming immigration (allowing a legal pathway to citi-
zenship) would help finance the ACA by adding millions of tax-paying workers. A
recent study by the Pew Research Center showed that with controlled, regulated
immigration, the U.S. population could grow by 2050 to nearly 400 million.45 If so,
that would add 75 million new people to pay premiums for decades for the ACA.
Favoring the ACA #2: Greater Efficiency
The ACA could eliminate the overhead, profit, and waste of multiple private insur-
ers. About 4 to 12 percent of health care costs represent fees and profits of private
insurance plans, $100 billion in 2005.46 By comparison, Medicare has maintained
reasonable administrative expenses, about 2.5 percent of total expenditures.47 The
ACA could use that $100 billion to cover medical care for poor people.
Medicare and VA hospitals have been successful. Both employ technologically
advanced systems. Moreover, both have done so while the number of people using
them and the services offered have increased. Unexpectedly, the cost of the ACA
to the federal government is now predicted to be 25 percent less than the $465
billion, originally estimated for 2016–2019. Why? Because original estimates assumed
that all states would expand Medicaid, which did not happen.
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 379
Opposing the ACA #2: Federal Bureaucracy Is Inefficient
Critics predict that the ACA will create a bloated, unresponsive federal bureaucracy.
During the 1960s and 1970s, the VA became such a bureaucracy. The federal gov-
ernment cannot do certain things well, and one of them is health care.
The ACA does not eliminate private insurers but merely manages them. It is
not a single-payer system. Instead it offers every citizen the chance to purchase
insurance (private or in a state exchange) or pay a tax. Therefore, it is unclear what
savings will be generated, if any, by the ACA.
Critics also predict that the ACA will become another End Stage Renal Disease
Program, with runaway costs. What everyone pays for, nobody pays for. In public
systems, everyone will seek his own advantage to the detriment of the overall good.
The ACA passed in part because Big Pharma and insurance companies could keep
their profits high, so little savings have resulted.
The huge federal government is not famous for its efficiency. Witness the
Armed Services, where cost overruns are common for huge weapon systems. With-
out competition, there will be no accountability.
All this raises the question of: what is the proper role of the federal government
in medical care? Consider federal funding for end stage renal disease, artificial
hearts, and AIDS, which is politicized and occurs at the expense of other diseases,
such as cancer. Government is being asked to do too many things for too many
people.
One-seventh of the American economy is at stake in health care, plus one-sixth
of new jobs. The federal government already runs one-sixth of the economy in
connection with the Armed Services and national defense, not to mention another
sixth controlled by other federal agencies, states, cities, and county governments.
As said, the VA is already the second-largest branch of the federal government and
runs all VA hospitals. Considering all this, we do not need another expansion of
government.
Recent scandals in England at the NHS show what happens when government-
run medical systems grow too large. Supposedly, 1,200 patients starved to death
and all told, 3,000 deaths in NHS-trust hospitals are being investigated for suspi-
cious surroundings. A similar scandal occurred at National Military Medical Center
in Washington, D.C.–-right under the eyes of Congress—until courageous whis-
tleblowers publicized the abysmal conditions and caused massive reforms.
The states resisting expansion of Medicaid are not callous but are fiscally con-
servative. Although the federal government pays for 90 percent of the expansion
for the first three years, after that, each state must pay for all the new Medicaid
patients. At present, many states must choose between fully funding universities,
Medicaid, or prisons, but not all. Without massive new taxes, Medicaid cannot be
prudently expanded.
Also, is the tax enough on individuals for not having coverage? For adults over
26, premiums will cost at least $3,000 a year, but the tax is only $100 (or loss of a
tax credit in Massachusetts of $219). The Congressional Budget Office correctly
estimated in 2013 that 6 million people would opt to pay the $100 and forgo cov-
erage.48 That bodes ill for the ACA, which, starting in 2014, needs premiums of
healthy, young people to subsidize costs of caring for the old.
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380 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
Favoring the ACA #3: Making Medicine Rational
Starting in 2013, the ACA banned experience rating by insurance companies. The
ACA assumes that coverage is a moral enterprise of sharing risk to help those with
bad genes or those who are victims of accidents. It rejects the idea that selling
medical insurance should be a way to make profits.
Of importance, because physicians and surgeons created BCBS, it reimburses
procedures well but not preventive services. Specialists who do procedures receive far
more than physicians in primary care who talk to patients: An ophthalmologist gets
$2,000 for removing a cataract in an hour, but a geriatric psychiatrist gets only $180
for talking to the same patient.
The ACA must emulate Canadian and English systems—pay more to primary
care physicians and pay less for procedures (or limit access to them). It is outrageous
that the physicians who directly care for so many people make only half as much
as dermatologists and ophthalmologists.
One way that the ACA does try to control costs is by setting up systems to
encourage evidence-based medicine. At present, Medicare reimburses physicians for
almost any treatment that works or that might work. The ACA sets up review panels
to rationally evaluate whether surgery works best for diverticulitis at $100,000 or
simple antibiotics plus dietary changes at a cost of $400.
Opposing the ACA #3: Government Cannot Make
Medical Finance Rational
Democracies try to balance two competing values: equality and liberty. A system
once in equilibrium with perfect financial equality must forbid inheritance of money,
unequal trades, or unequal pay, else the system will soon create citizens of unequal
wealth.
We might conceive of equality and individual liberty as the X and Y axis of
Cartesian coordinates, respectively. The more we move to perfect equality, the more
individual liberty vanishes. For example, for many decades America had no income
tax: Citizens kept all the money they made. The programs of the Great Society
transferred money from the working to the needy. The liberty of some to keep all
their money was reduced to increase financial equality for all.
Transfers of income mean taxation, and all taxation is involuntary. Involun-
tary taxation to some is a kind of working slavery, where a certain portion of the
year is required just to pay one’s taxes, say, the first six months. The cost of the
ACA is too high if everyone must work another month against their will to pay
for it.
For universal coverage to work, patients cannot be allowed to opt out of the
system. This is like having a situation of perfect equality and then allowing un-equal
trades. This problem undermined the Canadian system. Similarly, physicians would
not be allowed to sell their services privately or avoid being in the ACA.
What we need in medicine is not socialized medicine but a real market of sup-
ply and demand. When consumers have choices among competing providers, price
will reflect what people want and determine future supply. The ACA brings us too
much equality at the expense of personal liberty.
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 381
Opposing the ACA #4: Health Care Is Not a Right
The ACA would make access to health care a right of all American citizens.
Elderly Americans now think of Medicare as a right, and most Americans would
come to think of the ACA as a right. Is that what we want?
Supporters of the ACA claim that citizens have a right to basic health care. The
problem here is conceptual: America was founded on negative rights of non-
interference: rights to be left alone, to pursue happiness, and to think, speak, assem-
ble, and worship without interference from government. Such “freedom from”
differs dramatically from “freedom to.” The latter is a positive right to some service
from others, that is, an entitlement.
The modern state has moved too much from negative to positive rights, foster-
ing lifelong dependency among millions of people on government. For Libertarians,
this is a transfer of money from the hardworking people who pay taxes to fund the
government to the dependents. This is wrong.
After three years of Medicaid coverage of everyone in a state, both physicians
and patients will feel entitled to coverage. States will then be in a bind, as Illinois
was in 2015, when voters refused the increase in taxes but still wanted more ser-
vices. But why create this fiscally irresponsible expectation in the first place?
What this means is that there is no logical point after which we must stop pro-
viding health care and before which coverage is a right. It all blends together, and
once you make one part of the continuum a right, soon the whole thing will be.
Besides, no one can agree on what is basic medical care. Basic care in America,
like dialysis, is luxurious in Mexico or Kenya. When American physicians visit devel-
oping countries, they despair that they cannot provide the basic care of American
medicine.
As medicine improves, what is minimal becomes normal, what is extraordinary
becomes ordinary. So in 1962, kidney dialysis was extraordinary; now it is ordinary.
In the 1970s, kidney transplants were extraordinary; now they are ordinary. And
so on.
Problems at the margins would be difficult: Who is a citizen and entitled to
national care? A baby born here? An immigrant? How long must one live here
before becoming eligible? Would it be right to let some move here and, say, after
seven years, have the same medical benefits as someone who has paid into the
system for 30 years?
Favoring the ACA #4: Minimal Health Care Is a Right
Justice requires universal medical coverage, at least it does if “Justice is Fairness,”
as defined by philosopher John Rawls. Rawls argued that justice applies to the basic
structure of society, and health care is part of that structure.
According to him, two main principles of justice exist. Imagine a social contract
where citizens choose under a veil of ignorance about their own age, race, religion,
sex, health, wealth, abilities, and talents, so they cannot bias their choices by con-
sidering their arbitrary personal characteristics. Under these conditions, Rawls
believes that rational people would not gamble but would first choose those struc-
tures that gave people maximal equal liberty.
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382 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
Rawls recognized that the world is naturally unfair: Some people are born into
rich families, some into poor ones; some are born healthy, others with spina bifida.
Government can either worsen such inequalities or lessen them. For Rawls, just
governments reduce natural inequality while preserving liberty.
So, and second, some liberty could be sacrificed to achieve greater equality.
When? For Rawls, inequality is justifiable when it works to the advantage of those
who are worst off. We would choose this under the veil of ignorance because, when
it lifts, we might be the worst-off person. This is Rawls’s second principle of justice,
the difference principle.
How might Rawls’s approach be applied to America now and the ACA? The
past 50 years have not been good for the poor in America. Between 1967 and 2016,
the gap between the richest Americans and poorest Americans vastly widened, as
the former jumped from a median salary of $86,000 to $139,000, while the latter
only inched from $9,300 to $11,900. Worse, in 2015, the top 1 percent of the world
owned half of the world’s wealth.
Over these years, more and more workers had to work longer hours just to keep
what they had. Jobs that once paid $20 an hour now paid $7. Before, people could
graduate from high school and get a good job for life in a unionized auto plant, but
that is no longer possible. If, as Rawls assumes, a just society is egalitarian, then
American society became more unjust.
Prior to the ACA, more than 46 million Americans lacked coverage, which is
an unjust, structural inequality at a level where life-and-death decisions are made.
According to Rawls’s difference principle, an unequal medical structure would
be just only if the poor were better off under it than under an egalitarian system.
In the present, unequal American medical system, that is obviously false.
Underlying Rawls’s approach to justice is the ability to imagine ourselves as
worst off—to see ourselves as sick, hurt, poor, and uninsured; to imagine how bad
it would be to have a serious accident and how much worse it would be to have no
way to pay for the care we need.
As for using capitalistic markets to control medical finance, let’s analyze this
idea in some depth. In a true market, people would buy health care, such as an
operation on their knee, with their own money. There would be no medical insur-
ance and thus no reimbursement from insurers. Because people would have to pay
for their care themselves, prices would tumble.
For a routine eye examination, patients might choose a nurse practitioner
charging $10, a primary care physician charging $30, or an ophthalmologist charging
$300. Given these alternatives, most would not choose the ophthalmologist, and so
ophthalmologists would lower their fees to compete, unless they could somehow
demonstrate that their services were worth more. On the other hand, if covered by
their medical plan, most Americans would go to an ophthalmologist.
Such a true market would lower costs, but a market in medicine also has bur-
dens, especially for sick and elderly patients. When people have just discovered they
have cancer or multiple sclerosis, they do not always make good decisions. As one
expert group concluded:
The elderly are less equipped to deal with a marketplace of health care than younger,
working persons. … [they] suffer from physical and mental impairments (including
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 383
eyesight, hearing, and memory), have more trouble … comprehending the increasingly
complex insurance arrangements … [and] lack the counsel of the purchasing agents and
benefits representatives who serve younger, employed populations. … many [retired
persons] will not fare well in the rough and tumble of a health care marketplace.49
In a true market, medical professionals would become hardboiled, doing wallet
biopsies before helping anyone. A real market in medicine would be a harsh, cruel
system where patients and professionals no longer worked together to overcome
illness, but where each bargained with the other for financial gain.
It is also true that if health care were like other commodities—rather than being
subsidized as it now is—many people who could afford care would make foolish
decisions (right now, half of applicants for Social Security take it at age 62 and only
2 percent wait until 70, when benefits nearly double). If they had to choose between
a new car and a hip replacement, some would choose the car. Moreover, some
people might be tempted, or pressured, to sacrifice health care for the sake of their
families; a parent might give up a hip replacement and put the money toward a
house for his or her family. In this regard, a true market is exactly what people
lacking insurance face today.
Some Libertarians call the ACA “socialized medicine.” Lest that emotional
phrase freeze our thought, consider exactly what “socialized” means. “Socialized”
could mean simply “publicly owned.” If so, that is not necessarily a bad thing, or
even unusual. In America, highways and waterways, public schools, state colleges
and universities, the armed forces, airwaves, the air, the skies, and national parks
are publicly owned
When Congress debated Medicare in 1965, the American Medical Association
(AMA) opposed it as socialized medicine. In 2009, the AMA opposed President
Obama’s plans for universal coverage (although only one-third of American physicians
joined the AMA). American physicians in 1965 then feared that government-
administered care financed by taxes would mean government-controlled care50 and
that all physicians would soon be employees of the federal government. To placate
these physicians, a crucial decision was then made: Under Medicare, physicians would
be reimbursed on a fee-for-service basis. Eventually, this arrangement made physicians
rich and gave them the best of both worlds: freedom to work independently rather
than as government employees and freedom to order infinite services for their patients—
services paid for by government through higher Medicare taxes.
Opposing the ACA #5: Health Care Is Not a Right
Rawls does not own the only theory of justice. His next-door neighbor at Harvard,
Robert Nozick, championed a Libertarian theory of justice that advocates a minimal,
not a maximal, state. For Libertarians, the last thing the federal government should
do is enter the business of providing medical care. Not only is government ineffi-
cient in providing medical care but it is also too expensive when it does so, as well
as too bureaucratic and too intrusive to privacy. More important, it’s morally wrong
for big government to do so. Providing medical care is the job of physicians, medical
practices, and hospitals, but not the state.
The more health care is seen as a right, the more life becomes medicalized, that
is, people tend to seek medical care in more and more circumstances. That
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384 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
happened in Australia, whose system once covered payments for in vitro fertiliza-
tion. Furthermore, people now live much longer—partly because of the care Medi-
care provides—and people who live to be old cost the most.
As said, Massachusetts is on track, by 2018, to spend $16,000 per person, $3,000
more than the national average.51 What if every state has the same problem?
The NHS in the United Kingdom is struggling to rein in costs, as is the Canadian
system. An axiom of medical finance is that increasing access while expanding
services increases costs.
Our experience with Medicare has taught us an important lesson: The system
cannot expand the number of patients covered and the range of services offered and
simultaneously decreases costs. Coverage for mental illness in the ACA will be on
the same level as coverage for physical illness. This parity alone will cost billions.
Each increase in services provided to all Americans costs more money. The
increases in services that are most commonly mentioned are long-term care in
nursing homes, home health care, hospice care, transportation to medical facilities,
coverage for pregnancy and birth control, and dental services for children.
Initially, the ACA was to offer voluntary long-term care insurance, but this had
to be scuttled when few people indicated a willingness to buy such coverage and
at the very time when private insurers were dropping such coverage.52 Backing up
such coverage would have incurred exorbitant costs by the federal government.
In 2013, the trustees of Medicare and Social Security announced that, without
changes, Medicare will run out of money in 2026 and Social Security in 2033.53
Despite this announcement, in 2006, Congress passed a new drug benefit for Medi-
care recipients.54
Libertarian University of Chicago law professor Richard Epstein emphasized
that the cost of the ACA dramatically increases as the system moves from insuring
each smaller segment of the 46 million uninsured Americans.55 Covering most
children is relatively cheap. Covering most of the adult, working poor is not exor-
bitant. But covering the last 10, 5, or 1 percent is expensive because such percent-
ages represent the real cost-busters that all private systems avoid. These patients
suffer diabetes, schizophrenia, or congestive heart failure. If a national system
entitles them to the best care, no one can say when a just limit of care has been
reached.
Finally, the End Stage Renal Disease Program stands as a shining example of a
federally run, medical entitlement that has cost billions more than expected. Gen-
eralizing, it will be impossible not to fund more and more services, running risks
of bankrupting the country yet that is what the ACA tries to do.
Libertarians just do not believe that the American government should control
costs and provide universal coverage, as happened in Canada, Germany, and
Australia. They fear that government will limit freedoms of physicians, businesses,
and mandate expensive services requiring higher taxes.
Medicaid presently gobbles a large share of state budgets. In 2011 and according
to the National Association of State Budget Officers, Medicaid cost about 25 percent
of state budgets, competing with funding of prisons, highways, K–12 education,
higher education, and pensions for state employees.
Between 2014 and 2016, the ACA paid for the cost of expanding Medicaid to
all people under age 65 with family incomes below 138 percent of the federal
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 385
poverty level. But in 2017, states will begin to shoulder a larger and larger share of
these benefit costs, ending at 10 percent in 2020.
Importantly, the ACA does not pay for the administrative costs of expanding
Medicaid rolls. The conservative think tank, the Heritage Foundation writes:
Texas recently concluded that the Medicaid expansion may add more than 2 million
people to the program and cost the state up to $27 billion in a single decade. The
Florida Agency for Health Care Administration estimated in April that the ACA’s
Medicaid expansion would require an additional $5.2 billion in spending between
2013 and 2019 and more than $1 billion a year beginning in 2017. In California, the
Legislative Analysts Office concluded that the ACA’s Medicaid expansion will likely
add annual costs to the state budget in the low billions of dollars. Mississippi …
retained Milliman, Inc., a national health care econometrics firm, to perform a
fiscal analysis … For Mississippi, … between 206,000 and 415,000 people will be
added to Medicaid, with a 10-year impact on the state budget of between $858
million and $1.66 billion.
The seven-year cost of the Medicaid expansion in Indiana is estimated to be
between $2.59 billion and $3.11 billion, with 388,000 to 522,000 people joining the
state’s Medicaid rolls. Finally, Milliman estimates that the ACA will result in nearly
one of five Nebraskans being covered by Medicaid at a cost of $526 million to $766
million over the next decade.56
One way to put the crunch is this: Voters in Illinois, California, and Alabama
consistently refuse to raise taxes, so legislators have a zero-sum budget (funding one
thing more means less for what’s left). If funding for Medicaid is 24 percent and
higher education is 15 percent of a state’s budget, and both are funded equally, then
funding Medicaid at 34 percent means funding higher education at 5 percent.
Favoring the ACA #5: Costs Can Be Controlled
According to the American Heritage Foundation, “New taxes on drug companies
($27 billion) and medical device makers ($20 billion), as well as new reporting
requirements and regulations imposed on physicians, will make access to health
care and services more costly and difficult for seniors under the ACA.”
This is deceptive. In 2007, the top 10 pharmaceutical companies made more prof-
its than the other 490 Fortune 500 companies.57 Manufacturers of medical devices,
such as LVADs, dialysis machines, and stents, also made huge profits. Taxing such
companies to fund more medical services for more patients is not unreasonable.
Fixing Medicare and Social Security is not as difficult as alarmists predict. Incre-
mental changes will produce big long-term results. Because people are living longer,
the age of eligibility for Social Security has been raised to 67 (for those born after
1960) and, later, will perhaps rise to 70. The Medicare payroll tax has increased
from 1.45 to 2.35 percent for a married, employed couple.
Likewise, to pay for the ACA, the amount that can be sheltered from taxes in
flexible spending accounts has dropped from $10,000 to $5,000 to $2,500 for
employees of companies offering such plans—a net increase in taxes. In 2018, the
most generous medical plans will be under a new tax. For the wealthy, the ACA
raised the tax for Medicare for hospitals from 2.9 to 3.8 percent. It also raised the
taxes on capital gains, royalties, and dividends from 15 to 18.8 percent.
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386 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
Despite the lamentations of those opposed to the ACA, none of these new taxes
are earthshaking. The new taxes are incremental, and they tax the very people who
have gained so much wealth and income over the past two decades (one-sixth of
whom work in health care).
Under the ACA, state regulators can reject “unreasonable” increases in premi-
ums by insurers. In Massachusetts in 2010, they rejected 90 percent of such requests,
resulting in 7.7 percent increases in premiums rather than the national average of
20 percent.58 This ability to regulate increases in premiums by private insurers should
help consumers (it saved $8 million for people in Massachusetts in 2010).
Given the power of government to regulate increases in premiums and to study
rational medical care, it may be possible to expand coverage and reduce costs.
Without change, Medicare would have continued to increase its costs exponentially,
so the opportunity cost of a future without the ACA is millions more Americans
without any medical coverage at all and workers paying more costly premiums each
year for lesser coverage. Something had to be done.
Opposing the ACA #6: Intergenerational Injustice
Financing the ACA will create a massive battle of intergenerational justice. The Baby
Boomer generation now retiring is no “Greatest Generation”: It did not experience world
wars or the Great Depression but instead experienced relatively good times and rela-
tively luxurious medical care. These entitled seniors will not give up their perks easily
and will want every dime of their Social Security checks and Medicare coverage.
One popular book about Medicare benefits states, “The most fundamental point
is that Medicare is not a gift. You paid for it while you were working. Medicare
owes you services in just the same way that a health insurer to whom you have
paid premiums owes them to you.”59
In fact, and as shown by the FICA taxes on their paychecks, today’s young workers
pay for the Medicare benefits going to today’s elderly.60 After the first few years on
Medicare, most beneficiaries receive benefits amounting to far more than they paid in.
Richard Lamm, Colorado governor from 1978 to 1987, wrote, “Dr. Thomas Starzl
recently gave a liver transplant to a 76-year-old woman. It cost $240,000. Dr. Starzl
should understand that with the average U.S. family making $24,000 a year, he has
sentenced 10 U.S. families to work all year so that he could transplant a 76-year-old
woman.”61
The ACA will sentence not just 10 U.S. families, but Generation Xers, Millennials
(Generation Y), and the Silent Generation (Generation Z) to tax slavery to pay for
(1) more and more medical care for (2) more and more seniors who are (3) living
longer and longer. According to the Social Security Administration, 10,000 Americans
a day become eligible for its benefits, and between 2007 and 2027, 80 million new
beneficiaries will receive Social Security entitlements.
Will anything be left for young people after the Baby Boomers eat through all
medical care possible and live into their 90s? This is also assuming no expensive, major
war or depression occurs, which—given the state of world affairs—is optimistic.
States that do not expand Medicaid to cover everyone may be doing the young
a favor, because once an entitlement is created for universal medical coverage, the
young will be yoked to this tax burden forever.
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 387
Already the act is hurting people aged 20–30. Some universities have limited
the hours that adjunct professors and graduate students work to under 30 to avoid
providing medical coverage. Many employers are doing the same. So the first effect
of the ACA on many young adults is to ask them to pay for medical coverage when
they’re struggling to pay for the basics.
In selling the ACA to Americans, President Obama often said, “If you like your
plan, you can keep your plan” (e.g., in St. Charles, Missouri, on March 10, 2010).
He also said citizens could keep their physicians. But the ACA hurt some of the 12
to 15 million Americans who previously had bought individual policies, especially
healthy citizens who took risks and who thus chose cheap policies that did not
cover pregnancy or mental illness and that had high deductibles. Because of man-
dated, more extensive coverage in the ACA (e.g., for mental illness) and because
the healthy must subsidize the sick, people holding these policies often saw their
premiums increase under the ACA.
Favoring the ACA #6: No Intergenerational Injustice
No intergenerational injustice exists under the ACA. First, under the veil of igno-
rance, everyone would choose to insure themselves against being injured in a car
accident and having no coverage.
Second, many young people without insurance are now free riders, paying noth-
ing into the system, yet being cared for when sick or injured.
Some seniors need to pay more. Seniors making over $250,000 a year should
not get free Medicare. There should be some means testing.
Justice has different meanings. It will be unjust if the final 19 states don’t
expand Medicaid. They are violating the idea that the whole country is creating a
pool for community rating.
Update: Six Years of the Patient Protection and
Affordable Care Act
The rollout of the ACA suffered terrible problems, especially attacks from Republi-
cans and businesses opposed to it. It also suffered from blameworthy failures of
software in enrolling people in government-run exchanges.
In June 2015, the ACA survived a second major challenge when the U.S.
Supreme Court decided that the ACA allowed the federal government to provide
nationwide tax subsidies to help lower-income Americans buy coverage. “Congress
passed the Affordable Care Act to improve health care insurance markets,” Chief
Justice John Roberts wrote for the 6-to-3 majority, “not to destroy them.”
From 2008 to 2014, the number of Americans without medical coverage dropped
from 48 million to 32 million, a decline of 16 million people. Kentucky and its
Democratic governor embraced the ACA from the start, setting up its own state
plan (wisely calling it “Kynect” and not “Obamacare,” because the latter had bad
associations) and newly enrolling 413,000 Kentuckians, 330,615 through expanded
coverage in Medicaid and 83,000 who bought (often subsidized) private insurance.62
Over 75 percent of these previously lacked medical coverage.
Of course, even though the federal government covered most of the costs of
such expansion of Medicaid in the early years, it still cost Kentucky something and,
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388 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
as the federal government draws down its support over the next few years, it will
cost Kentucky more: at least $74 million in 2017 and $363 million by 2021.63 In
2016, Republican governor Matt Bevin vowed to dismantle Kynect by the end of
2016, calling it “unaffordable” and saying it would soon cost “$150 million a year.”
Most Americans lacking coverage in 2016 did so voluntarily, citing the high cost
of getting coverage. Why were costs so high? The answer is complex.
First, the ACA forbids plans from using experience rating to charge sick people
more or charging young, healthy people less. Second, adverse selection of sick people
needing coverage into plans occurred. Third, during the six years of the ACA, Amer-
ica began a recession that resulted in structural changes in the economy, making
more people struggle to live paycheck-to-paycheck and making them unable to afford
medical coverage. Finally, although premiums of young, healthy people theoretically
keep costs low, repaying student loans and low-paying first jobs did not allow college
graduates to purchase medical coverage, so they have not signed up as expected.
Exorbitant costs of drugs also created high costs, especially drugs such as
Kalydeco, a $300,000-a-year drug by Vertex Pharmaceuticals for people with cystic
fibrosis and drugs for hepatitis C by Gilead Sciences that cost $84,000 for a 12-week
course. In 2015, attention focused on young Martin Shkreli, who bought an anti-
parasitic drug and raised its price from $13.50 a tablet to $750 a tablet In 2016,
Mylan raised the price of EpiPens, which offer emergency medicine for victims of
allergy attacks, from $100 in 2009 to $600. Unlike Canada, which can negotiate
prices with drug companies, the U.S. government cannot by law do so, so insurance
exchanges must pass along costs of drugs to consumers. (This was the deal struck
with Big Pharma that allowed them to back passage of the ACA.)
As Richard Epstein predicted, plans experienced adverse selection (enrollment)
of sick, previously uninsured, expensive patients, which also created high costs.
Addiction to various drugs among Americans has fueled an epidemic of hepatitis,
whose treatment can require Gilead Pharmaceutical’s $84,000 drug and even a
$250,000 liver transplant.
New plans also could not exclude patients with previously existing conditions
or require waiting periods of them. Private insurance companies thus found it dif-
ficult to stay out of red ink: BCBS of Alabama, which has a 90 percent of market
share in the state, lost $135 million in 2015 from costs of insuring patients who
gained coverage under the ACA. United Health Care (UHC), the nation’s largest
health care program, lost $475 million in 2015 and is expected to lose $500 million
in 2016; thus, it is contemplating leaving the ACA exchanges. UHC implied that
too many of its new enrollees waited until they got sick to sign up and then gamed
UHC by qualifying for coverage during the special enrollment period for those who
change jobs, get married, get divorced, or have babies.
Finally, President Obama may have been naïve in his promises to Americans:
Many did not keep their previous plan or physician because their plan or physician
changed, or because they couldn’t afford their previous plan or physician anymore
under a new, more expensive plan. By 2016, this had made some Americans very
angry at the federal government, whom they perceived as taxing them more in
order to pay for medical care for someone else. It may also have been a mistake to
let private insurers be the middlemen: United Health Care and Aetna left most state
exchanges because of huge losses they had occurred insuring clients. Much adverse
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Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 389
selection had occurred, with the neediest patients buying policies and the healthiest
avoiding doing so. In the long-run, it seems that a national, single-payer system is
the only sustainable option.
FURTHER READING
Thomas Bodenheimer and Kevin Grumbac, Understanding Health Policy, 5th ed., New York:
McGraw-Hill, 2008.
Ezekiel Emanuel, The Ends of Human Life: Medical Ethics in a Liberal Polity, Cambridge, MA:
Harvard University Press, 1992.
Richard Epstein, Mortal Peril: Our Inalienable Right to Health Care? New York: Basic Books,
1997.
Sicko, (2008), a documentary film by Michael Moore on the American medical system, in
contrast with England, Canada, France, and Cuba.
DISCUSSION QUESTIONS
1. How is community rating generally Rawlsian in nature, and how is experience
rating more Libertarian?
2. How did Canada’s system work for many years by forbidding physicians and
patients from contracting with each other for money outside the national sys-
tem? Why was this necessary?
3. Does a just society offer its citizens some minimal level of medical care? How
would that minimal level be defined?
4. Should illegal immigrants be entitled to medical care? If not, should physicians
work for the Immigration and Naturalization Service (INS) and report illegal
immigrants in the ER?
5. What are some of the common misconceptions about medical coverage in
America?
6. What are likely costs of the ACA to states?
7. Will young people today really benefit from ACA, or are they going to be tax
slaves to pay for it?
8. What’s the best thing about the ACA? The worst thing?
9. What happens to states if a president who dislikes the ACA is elected and fails
to fund it?
10. Why has the ACA experienced unanticipated costs?
NOTES
1. Lisa Belkin, “Twice a Victim: Of Both Cancer and Care System,” New York Times, March 26, 1993, p. B12.
2. Personal communication from Lisa Belkin to author, June 17, 2006.
3. This case stemmed from a 1993 story by Lisa Belkin. In 2006, an email to her revealed that one of
her children said that Rosalyn had died “several years before.”
4. “International Profiles of Health Care Systems: 2012,” OECD Health Data, June 2012.
5. Alan Guttmacher Institute, quoted in Associated Press, December 15, 1987.
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390 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act
6. Clifford Krauss, “In Blow to Canada’s Health System, Quebec Law Is Voided,” New York Times, June
10, 2005, A3.
7. Ibid.
8. Ibid.
9. Personal communication to author, from former UAB alumnus who practices as a physician in
Canada.
10. Geoffrey Rivett, From Cradle to Grave: 50 Years of the NHS, Kings Fund, 1998, p. 437. ISBN 1-85717-
148-9.
11. Rajeev Syal, “Abandoned NHS IT System Has Cost L10bn so far,” https://www.theguardian.com/
society/2013/sep/18/nhs-records-system-10bn
12. Brian Schilling, “Is Primary Care the Worst/Best Job in Medicine?” http://features. commonwealthfund
.org/is-primary-care-the-best-and-worst-job-in-medicine
13. Paul Starr, The Social Transformation of American Medicine, Basic Books, New York, 1982, p. 381.
14. This has been repeatedly claimed by members of Physicians for a National Health Program; see,
e.g., John V. Walsh, Providence Journal (Scripps-Howard), column, July 14, 1993. See also Paul
Krugman, “Death By Insurance,” New York Times, May 1, 2006.
15. Centers for Medicare and Medicaid Services, “On Its 50th Anniversary, More than 55 Million
Americans Covered by Medicare,” https://www.cms.gov/Newsroom/MediaReleaseDatabase/
Press-releases/2015-Press-releases-items/2015-07-28.html (accessed February 16, 2016).
16. http://www.kaiserhealthnews.org/Daily-Reports/2013/June/04/end-of-life-care.aspx.
17. Robert Pear, “Bailout Provides More Mental Health Coverage,” New York Times, October 6, 2008, p. A1.
18. Department of Veterans Affairs, “Annual Budget Submission,” http://www.va.gov/budget/products
.asp (accessed February 16, 2016).
19. Paul Krugman, “Health Care Confidential,” New York Times, January 26, 2006, p. A23.
20. The act allows both workers and their immediate family members who had been covered by a health
care plan to maintain their coverage if a “qualifying event” causes them to lose coverage. Among
the qualifying events listed in the statute are loss of benefits coverage due to (1) the death of the
covered employee; (2) a reduction in hours (which can be the result of resignation, discharge,
layoff, strike or lockout, medical leave, or simply a slowdown in business operations) that causes
the worker to lose eligibility for coverage; (3) divorce, which normally terminates the ex-spouse’s
eligibility for benefits; or (4) a dependent child reaching the age at which he or she is no longer
covered. COBRA imposes different notice requirements on participants and beneficiaries, depend-
ing on the particular qualifying event that triggers COBRA rights. COBRA also allows for longer
periods of extended coverage in some cases, such as disability or divorce, than others, such as
termination of employment or a reduction in hours. COBRA does not apply, on the other hand, if
employees lose their benefits coverage because the employer has terminated the plan altogether.
Consolidated Omnibus Budget Reconciliation Act of 1985, Wikipedia, http://en.wikipedia.org/wiki/
Consolidated_Omnibus_Budget_Reconciliation_Act_of_1985.
21. Robert Steinbrook, “Health Care Reform in Massachusetts—A Work in Progress,” New England
Journal of Medicine 543, no. 20 (May 18, 2006), p. 2095.
22. Jack K. Shelton and Julia Mann Janosi, “Unhealthy Health Care Costs,” Journal of Medicine and
Philosophy 17, no. 1 (February 1992), p. 8.
23. Robert Pear, “Health Care Premiums Soar as Coverage Shrinks,” New York Times, March 5, 2011, p. A13.
24. Consumers Union, “The Crisis in Health Insurance,” Consumer Reports, August 1990, p. 543.
25. “Key Facts about the Uninsured Population,” Henry Kaiser Foundation, September 26, 2013, http://
kff.org/uninsured/fact-sheet/key-facts-about-the-uninsured-population/.
26. Consumers Union, “Wasted Health Care Dollars,” Consumer Reports, July 1992, p. 436.
27. Courtney S. Campbell, “Gridlock on the Oregon Trail,” Hastings Center Report 23, no. 4 (July–August
1993), p. 6.
28. Matthew J. Carson, “Results of Oregon Health Plan Study Released,” The Commonwealth Fund,
July 29, 2005, http://www.cmwf.org/newsroom/newsroom_show.htm?doc_id=288798
29. Steve LeBlanc, “Mass. Health Care Plan Riles Some Liberals,” Associated Press, April 7, 2006.
30. Patricia Barry, “Coverage,” AARP Bulletin, July–August 2006, pp. 8–10.
pen07945_ch17_367-391.indd 390 9/8/16 9:52 AM
http://features
http://www.kaiserhealthnews.org/Daily-Reports/2013/June/04/end-of-life-care.aspx
http://www.cmwf.org/newsroom/newsroom_show.htm?doc_id=288798
https://www.theguardian.com/society/2013/sep/18/nhs-records-system-10bn
https://www.theguardian.com/society/2013/sep/18/nhs-records-system-10bn
https://www.cms.gov/Newsroom/MediaReleaseDatabase/
http://www.va.gov/budget/products.asp
http://www.va.gov/budget/products.asp
http://en.wikipedia.org/wiki/
http://kff.org/uninsured/fact-sheet/key-facts-about-the-uninsured-population/
http://kff.org/uninsured/fact-sheet/key-facts-about-the-uninsured-population/
Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 391
31. Stuart Altman and Michael Doonan, “Can Massachusetts Lead the Way in Health Care Reform?”
New England Journal of Medicine 354, no. 20 (May 18, 2006), p. 2094.
32. Ibid.
33. Alan Raymond, “Massachusetts Health Care Reform: A 5-Year Progress Report,” Blue Cross-Blue
Shield Foundation of Massachusetts, p. 4, http://bluecrossmafoundation.org/publication/massachu-
setts-health-reform-five-year-progress-report
34. Kevin Sack, “In Massachusetts, Universal Coverage Strains Care,” New York Times, April 5, 2008, p. A1.
35. Raymond, “Massachusetts Health Care Reform.”
36. Olga Pierce, “Analysis: Can Mass. Plan Stay Solvent?” United Press International Story, July 6, 2006.
37. John McDonough, “The Road Ahead for the Affordable Care Act,” New England Journal of Medicine
367, no. 3 (July 19, 2012), p. 200.
38. Cal Thomas, “NHS Lessons for The ACA,” Tribune News Service, Tuscaloosa News, July 12, 2013, p. A6.
39. Julia Preston, “Texas Hospitals’ Separate Paths Reflect the Debate on Immigration,” New York Times,
July 18, 2006, p. A18.
40. Ibid.
41. Garrett Hardin, “The Tragedy of the Commons,” Science 162 (1968), pp. 1243–1248.
42. Shikha Dalmia, “Who’s Milking Who?” Reason, August/September 2006, p. 44.
43. Eduardo Porter, “Here Illegally, Working Hard and Paying Taxes,” New York Times, June 19, 2006,
pp. A1–14.
44. Sabrina Tavernise, “For Medicare, Immigrants Offer Surplus, Study Finds,” New York Times, May
29, 2013, p. A1.
45. Jeffrey Passel, “Pew Research Center: Immigration to Play Lead Role in Future U.S. Growth,” Feb-
ruary 11, 2008, www.pewresearch.org.
46. Consumers Union, “Medicare for All Americans,” Consumer Reports, September 1992, p. 592.
47. Ibid.
48. Kelli Kennedy, “Health Insurers Fear Young People Will Opt Out,” Associated Press, Tuscaloosa
News, July 6, 2013, p. 3A.
49. David Blumenthal et al., “The Future of Health Care,” New England Journal of Medicine 314, no. 11
(March 13, 1986), p. 723.
50. Paul Starr, The Social Transformation of American Medicine, Basic Books, New York, 1982.
51. Raymond, “Massachusetts Health Care Reform,” p. 29.
52. LTC coverage increasingly looks like a bad deal for everyone: Consumers face rising premiums and
not enough young people are buying (or keeping) LTC policies.
53. Amy Goldstein, “Forecast Dire for Medicare Fiscal Health,” Washington Post, May 2, 2006, reprinted
in Birmingham News, “Medicare Remains on Fast Track to Bankruptcy,” p. 3A, http://www.rpc.
senate.gov/policy-papers/medicare-remains-on-fast-track-to-bankruptcy.
54. Robert Pear, “In Medicare Debate, Massaging the Facts,” New York Times, May 23, 2006, p. A19.
55. Richard Epstein, remarks made at UAB, Conference on the Ethics of Managed Care, April 12, 1997.
See also his Mortal Peril, Addison-Wesley, Reading. MA, 1997, especially Chapters 7 and 8.
56. Heritage Foundation, “How Much Will the ACA Cost Your State?” http://www.askheritage.org/
how-much-will-obamacare-cost-your-state/.
57. Carl Elliott, White Coat, Dark Hat, Beacon, New York, 2010.
58. Kevin Robillard, “A Health Care Showdown in Massachusetts,” Newsweek, July 26, 2010, p. 8.
59. David Orentlicher, “Rationing and the Americans with Disabilities Act,” Journal of the American
Medical Association 271, no. 4 (January 26, 1994), pp. 308–314.
60. Ibid.
61. Richard Lamm, “St. Martin of Tours in a New World of Medical Ethics,” Cambridge Quarterly of
HealthCare Ethics 3 (1994), pp. 159–167. Reprinted in Classic Works in Medical Ethics, ed. Gregory
Pence, McGraw-Hill, New York, 1998.
62. Steven Brill, “How Kentucky Got It Right,” Time, August 18, 2014, pp. 19–25.
63. Abby Goodnough, “Kentucky, Beacon for Health Law, Not a Lab in Its Retreat,” New York Times,
November 27, 2015.
pen07945_ch17_367-391.indd 391 9/8/16 9:52 AM
www.pewresearch.org
http://bluecrossmafoundation.org/publication/massachu-setts-health-reform-five-year-progress-report
http://bluecrossmafoundation.org/publication/massachu-setts-health-reform-five-year-progress-report
http://www.rpc.senate.gov/policy-papers/medicare-remains-on-fast-track-to-bankruptcy
http://www.rpc.senate.gov/policy-papers/medicare-remains-on-fast-track-to-bankruptcy
http://www.askheritage.org/how-much-will-obamacare-cost-your-state/
http://www.askheritage.org/how-much-will-obamacare-cost-your-state/
This chapter explores ethical issues of medical enhancement, including how the
enhancement of some people might affect people with disabilities.
FAMOUS CASES OF ENHANCEMENT
Oscar Pistorius and his Cheetahs
In the summer of 2012, South African Oscar Pistorius, born with deformed feet,
amazed the world with how fast he could run on his Cheetahs, special carbon blades
that surgeons attached to his leg bones. Similarly, Sara Reinertsen, a single leg
amputee, runs marathons using a Cheetah instead of a foot. But Cheetahs are graph-
ite—stronger and more flexible than bone. Should they have been allowed to com-
pete? Did medicine make them go from dis-abled to too-abled?
Tess and Prozac
In 2007, psychiatrist Peter Kramer described the transformation of his 30ish patient
Tess, who, after her father died when she was 12, lived in public housing and cared
for her nine siblings and elderly mother, rendering her depressed, withdrawn,
fearful, and unable to form a relationship. After taking Prozac, an antidepressant
and serotonin reuptake inhibitor, Tess overcame her fears, started to date, left
public housing, and became independent. How far should we go in treating people
such as Tess who feel less than well? What if she felt just “less than ideal”? Should
medicine try to fix every limitation in humans, or are some limitations just
natural?
Critics such as bioconservative Leon Kass claim that Tess’s happiness is ersatz,
that she would have been better off fighting through her paralysis to the same ends.
Now she depends on a drug manufacturer for her happiness and must find a way
to pay for the drug, with hope that its effects don’t wane over time. In sum, Tess
has fake happiness, not the real thing.
C H A P T E R 1 8
Ethical Issues in Medical
Enhancement (and their effect on
people with Disabilities)
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Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 393
Cycling and Doping
In the 1980s, professional cyclists began secretly taking the hormone erythropoietin
(EPO), a hormonal growth factor that stimulates production of red blood cells. The
Federal Drug Administration (FDA) approved EPO as a medical treatment for patients
with anemia. At some point during these years, professional cyclists began storing
their own blood, then secretly injecting themselves with the stored blood, both before
and during races as well as using EPO as an enhancement in their blood.
Doping may have originated from doop, a Dutch word Americanized as slang
for a way of drugging victims or from the South African dop, a potent alcohol/
stimulant combination. Regardless, doping now means secret use of performance-
enhancing substances to gain advantage over competitors.
Doping with red blood cells gives an advantage in sports that require heavy use
of oxygen, such as cycling and cross-country skiing. Training at high altitudes in
the Rocky Mountains achieves the same effect, because the lower concentration of
oxygen stimulates the blood to create more red blood cells. Some athletes naturally
possess genes that give them more red blood cells.
An athlete may also transfuse him- or herself with others’ blood that contains
high counts of red blood cells. Any transfer of blood runs risk of infections, mix-ups,
and contamination. If such transfusions are done to avoid detection, then the blood
must be transported and given discretely and then all equipment secreted away.
From 2006 through 2008, random testing in the Tour de France revealed that
leading contestants had high levels of hematocrit, or the percentage of blood volume
occupied by red blood cells—a sign of doping. Such high levels caused these cyclists
to be kicked out of the race.1 Several cyclists later claimed that every competitor in
the race used similar methods. Was there anything wrong with what Lance Arm-
strong and other professional cyclists did? Doesn’t everyone try to get every con-
ceivable advantage in competing, whether in sports or in education?
Ritalin, Adderall, and ADHD
Psychiatrists estimate that attention deficit/hyperactivity disorder (ADHD) affects
approximately 4 percent of school-age children, 75 percent male. ADHD follows
two-thirds into adolescence and 40 percent into adult years.2 Such kids need to be
maintained either on methylphenidate (Ritalin) or dextroamphetamine (Adderall),
which allow them to function well. By 1998, Ritalin had been prescribed for 5 million
American children.3 For both adults and children between 2003 and 2006, and for
these two drugs, American doctors wrote 80 million prescriptions.4 Yet 50 years ago,
only about 50,000 of such prescriptions were written. What changed?
The active ingredient of dextroamphetamine is an amphetamine salt, and
amphetamines are highly addictive. Is it a good thing that millions of American
children function well only on Adderall? Are physicians complicit in this massive
drug dependency? Are they engaged in an unprecedented experiment, risking cre-
ation of millions of lifelong addicts?
Personal Body Shaping and Surgery
Finally, over the past decades, personal body shaping has become more acceptable
among males and females. To create lean, muscular physiques, males combine
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394 Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)
extensive exercise with injections of anabolic steroids and human growth hormone.
To create more youthful bodies and faces, women use exercise, surgery, and injec-
tions of botox. Is such body modification just personal taste or a perversion? Is there
anything morally wrong with it? Are the physicians who provide it sleazy? Do only
vain people engage in it?
These topics about enhancement occupy a major, expanding area of modern
medicine and create unique ethical issues. The rest of this chapter explores them as
well as what effect, if anything, enhancement might have on people with disabilities.
ETHICAL ISSUES OF MEDICAL ENHANCEMENT
What Counts as an Enhancement?
Consider running a race, say, a half-marathon. What is an acceptable way to increase
performance? Taking mega dosages of caffeine before the race? Wearing an expen-
sive running shoe? Hiring a team to provide water and energy bars at 1-mile inter-
vals? Using a music player with songs with a good beat? A GPS device that beeps
when your pace slows below your target? Using a sabbatical to train instead of
writing a book?
In any competitive sport, coaches are enhancers. As such, the early years of the
Olympics banned coaches. Anyone with special knowledge about physiology, train-
ing, equipment, endurance, muscles, metabolism, and mental focus helps an athlete
to run faster, jump higher, and win. A wealthy athlete who need not work has an
enhancement. Is it fair for him or her to compete against athletes who must train
after work? Ideally, everyone starts from a level playing field.
A college kid with ADHD taking Adderall does not seem like an enhancement
but a remedy. On the other hand, his natural state is lack of concentration, so
Adderall changes this state for the better. We think of things that bring people up
to normal as therapy, whereas the same things, when they take normal people
higher, we think of as enhancements.
This makes for a lot of gray areas. One medical dean claims that by prescription,
one-third of medical students take Ritalin, Adderall, or modafinil (a stimulant that
counters narcolepsy). To gain prescriptions for mentally enhancing drugs, have
savvy medical students learned to fake the symptoms of ADHD or sleep disorders?
Many such students discover that what worked to get them there—intelligence and
hard work—aren’t enough to compete well in medical school. To excel, they need
something more. And how does all these affect people with disabilities (which we
discuss at the end of this chapter)? Shouldn’t society try to bring them up to normal
functioning before it allows normal people to enhance themselves? Shouldn’t every-
one be able to ride a bike before medicine helps professional cyclists dope?
Positional Advantage
If everyone used steroids, there would be no benefit to doing so. If every cyclist
doped, there would be no advantage to doping. Right now, only a small percentage
of athletes take steroids, so a shot-putter who injects steroids can gain more muscle
mass than others and gain a positional advantage. A positional advantage confers on
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Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 395
the beneficiary an asset in a contest relative to others but vanishes if everyone else
has the same asset.
In competitive sports, even gaining a slight positional advantage over opponents
can make the difference between a good performance and an average one. Even when
competing against oneself in marathons, runners go to great lengths to gain small
improvements: training at high altitudes before big races at lower altitudes, eating spe-
cial meals before races, running behind a pacer, buying better shoes, and so on. Maybe
competing in sports is just all about gaining more and more positional advantage.
An Arms Race
If athletes suspect that competitors dope or take steroids, they realize that, by not
doing the same, they are at a competitive disadvantage. This suspicion motivates
them to take even more enhancements, often secretly. The arms race objection is
famous in the literature of enhancement and is a version of the slippery slope
objection in general ethics. The arms race objection basically opposes allowing any-
one to get a new advantage in competing because doing so forces everyone else to
get the same or risk always losing.
For example, taking several steroids together is known as stacking and carries
special dangers. Physicians have reported several cases where young male body-
builders took massive amounts of steroids and damaged their livers or hearts or
became violent. In American professional wrestling, which is really body building
and acting, several cases of “roid rage” have occurred, as when professional wrestler
Chris Benoit in 2007 strangled his wife, suffocated his 7-year-old son, and hanged
himself with a weight-machine pulley.5
The life and death of Lyle Alzado, who played 15 seasons for several professional
football teams, shows the dangers of stacking. In college in 1969, he began taking
anabolic steroids to become bigger and never stopped.6 At his peak, Alzado spent
$30,000 a year on steroids and human growth hormones, often buying them at gyms
around the country. Alzado admitted the steroids made him so crazy that he couldn’t
deal with social stress. His second wife blamed the breakup of their marriage on the
mood swings that steroids caused, a pattern also seen in wrestler Chris Benoit.
After years of denying that he used steroids and three months after being diag-
nosed with brain cancer, Alzado confessed, “It was addicting, mentally addicting.” “I
just didn’t feel strong unless I was taking something.” After receiving radical chemo-
therapy and contracting pneumonia, Alzado died at age 43 in 1992. Officially, he died
from brain lymphoma, a rare form of cancer. Use of steroids cannot be medically
proved to have caused Alzado’s lymphoma, but Alzado himself believed this.
End Secrecy; Legalize Enhancements
Citing the myriad problems of the Tour de France, British bioethicist Julian Savulescu
believes that rather than prohibiting use of banned substances in sports, we should
legalize them. For him, the enormous rewards of winning, coupled with the minimal
consequences of cheating and the low chance of being caught, make doping irre-
sistible to athletes.
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Savulescu thinks that drug use in elite sport is wrong only because it violates
the rules, so we should change the rules to make it permissible. He argues that
doing so will not lead to an arms race of drug taking: “We should not think that
allowing cyclists to take EPO would turn the Tour de France into some kind of ‘drug
race,’ any more than the various training methods available turn it into a ‘training
race’ or a ‘money race.’”7
Savulescu thinks the only limit of drugs in sport should be safety. His oppo-
nents think the safety of athletes is a good reason for prohibiting enhancing drugs
in sports, but Savulescu counters that many sports carry risks of permanent injuries:
race car driving, ski jumping, boxing, diving, jumping horses, pole vaulting, gym-
nastics, and competitive group cheerleading. Yet we tolerate these activities and
lionize their champions.
Furthermore, banning a substance may carry its own harms. Just as prohibition
of alcohol in the 1920s increased deaths due to the unregulated quality of bootleg
alcohol, banning drugs in sport leads to similar problems. If it’s out in the open
and medically supervised, everyone will be better off.
Inauthentic
Perhaps the case where enhancement seems most troubling involves taking drugs
that change mood and personality, for example, Peter Kramer’s patient Tess. In
Better than Well, physician-bioethicist Carl Elliott laments that millions of people
create drug-dependent, new versions of themselves that may be fake.8
Wake Forest English professor Eric Wilson, in Against Happiness: In Praise of
Melancholy, goes even further, arguing that Prozac simulates a living death, blocks
our creativity, hinders our spiritual growth-through-suffering, and should be
avoided.9 For Wilson, creativity, success, ambition, and vision actually conflict with
happiness. Settling for happiness leads to “half-lives, to bland existences, to waste-
lands of mechanistic behavior.” To immunize oneself inside a shell of Prozac, while
millions die each year from AIDS is to be “inauthentic.” Sorrow is “sweet,” he says,
but happiness is “self-satisfied smiles” (smugness), “treacly expressions … painted
on our faces” like botoxed lips and rouge. To be happy is to have “an essential part
of [our] hearts sliced away and discarded like so much waste.” For Wilson, this
world is so evil and awful that, if one does not hide from it inside some drug-
induced fog, one cannot possibly face it and be happy.
Cheating
Perhaps most cyclists in the Tour de France dope. Does that make it ethical? Isn’t
that the ad populum fallacy? Even if only one cyclist does not cheat, an honorable
man still exists. American cyclist Lance Armstrong was a hero for years because he
beat cancer and claimed he did not cheat and “lived strong” without doping. Now
we know he did cheat.
If the majority of athletes do not cheat, then the sport maintains a good, domi-
nant ethos. But when most athletes cheat—as appears to be the case in the Tour de
France—then the entire sport becomes unworthy of competition. The history of the
Tour de France does not explain why we should legalize enhancements, but explains
what happens when a culture of cheating and self-medication corrupts a sport.
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Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 397
In all sports, whether professional, college, or high school, taking steroids to
compete is cheating, plain and simple. Anything not legally open to all competitors
should be banned. Here, the controversy among users and nonusers about the long-
term safety of using steroids is moot. Steroids are used to gain an unfair advantage
in these sports—and that is wrong. In 2016, a doping scandal rocked sports when
tennis star Maria Sharapova, along with 99 other athletes, tested positive for meldo-
nium, a drug that increases endurance by improving the flow of blood.10
Of even greater importance, the casual acceptance of cheating through doping
and use of steroids undermines the spirit of fair competition. The attitude of bla-
tantly cheating to win is destroying many sports. Certainly when we see a large-
muscled man in body building, football, or other contact sports, we just assume
he’s taken steroids or growth hormones. Over the past decade, the average weight
of NFL linemen in football has increased about 80 pounds, and a lot of it is muscle.
Only steroids could do that.
As athletes stack more and more drugs, it is inevitable that cheaters get caught.
When East German female swimmers started to look like American football players,
everyone knew what was going on. It was also only a matter of time before everyone
knew what was occurring in the Tour de France and in professional baseball in
America.
Trite as it may sound, winning isn’t everything in sports. It’s how you win, and
taking banned drugs isn’t the way we want children and friends to win. We shouldn’t
harangue high school athletes about the dangers of using steroids. They will hear
the opposite from older, successful athletes. Rather, we should emphasize that it’s
cheating to use steroids or to dope.
If we don’t ban but allow steroids, doping, and other supplements, as Savulescu
argues, what happens? Given the pervasive culture of cheating in cycling, athletes
will not suddenly stop cheating. If a whole culture is secretly injecting enhancement
drugs to gain positional advantage, then that culture is not going away overnight.
Legal drugs will become the baseline; new drugs for positional advantage will be
sought. What about the argument that everyone would be better off if we just
legalized doping? Although that argument has a certain macho honesty, in real life
it doesn’t work too well. Taking the same attitude, why not let everyone take all
drugs without prescription? (We know from the increasing number of deaths in
North America from overdosages of opioids that this would be a bad thing.)
Okay, so secret use of enhancers is wrong in sports where they are banned, but
what about use of enhancers provided by physicians? What about Tess, college
students on Adderall, and people getting botox injections every other month for
wrinkle-free faces? Are they all cheating?
Here it’s important to do two things. First, we must define “cheating” carefully
and distinguish its different meanings. Second, we must separate kinds of cases and
ethical analysis of each.
We don’t think it’s cheating to defy what occurs naturally. Death in childbirth
from unwashed hands, lifelong pain after automobile accidents, and unchecked
spread of leukemic cells are natural but reversible by modern medicine.
As said, when medicine restores someone to normal functioning, or when it
brings someone below normal functioning at birth up to normal functioning, we
consider it therapy, not enhancement.
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Cheating is best defined when the rules say competitors can’t do X and someone
secretly does X. As several infamous runners have done, it’s cheating to sneak out
early of a marathon; hop on a car, bike, or subway; and then rejoin the leaders at
the end. Likewise, it’s cheating to compete in cycling or baseball and secretly inject
banned enhancers.
So we need to separate two quite different kinds of cases: (1) where enhance-
ment is explicitly banned and participants secretly use banned enhancers and
(2) where use of the enhancers is a personal, self-regarding decision.
What about an 80-year-old person who is trying to present his or her face to
the world as if it’s 30 or 40 years old? Here, someone is “cheating” in a different
sense. Insofar as the deception succeeds, the person cheats other people of knowl-
edge of the person’s true age. But no one is breaking any rules here.
What about antidepressants? Is it cheating to end depression and feel normal?
After all, what’s so great about feeling lousy? What about taking the same drugs to
go from feeling normal to “better than well”?
Of course, we suspect overnight transformations caused by taking drugs as
transient. Surely there is something admirable about struggling with relationships,
building virtues in facing existential crises, and gaining insights by talking about
previous mistakes. Maybe there is a sense here, which Kant would like, where
taking antidepressants is “cheating oneself.”
The movie Limitless and follow-up television series of the same name portrays
Eddie Morra who, after taking a potent, modafinil-like drug, suddenly acquires
amazing intellectual powers and boundless energy for short-term projects. Eddie
regards the drug as helping him harness his whole brain, not just the small part of
his brain that he normally uses. As such, Eddie regards his work on the drug as
his true self.
One way in which Eddie would be cheating would be if he entered intellectual
contests where use of the drug gave him positional advantages. In fair contests,
everybody should have access to the same enhancers.
Similarly, Tess regards herself on Prozac as finding her true self. Critics believe
that the new selves of Tess and Eddie are fake selves that are not built on their real
characters and, hence, are fragile and, ultimately, not worth having. Which is the
real self? The best self? Here we enter deep issues in the philosophy of mind best
left to other philosophers to solve.
Consider also Wilson’s claim about real selves and the suffering of the world.
Let’s accept the premise that antidepressants insulate people against the suffering
of millions of starving, AIDS-stricken people. If so, what’s so special about drugs?
Isn’t a person who spends all his life playing games on an X-box or chatting on
Facebook equally insulated? Or people spending all their free time at country clubs
playing golf and tennis? Why single out antidepressants? And why assume that a
previously depressed physician who took Prozac might not join Doctors without
Borders in his or her new, authentic self?
Not So Dangerous
Some athletes believe that the dangers of using steroids are exaggerated and, in
particular, that if steroids are used correctly and in moderation, they pose few risks
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Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 399
to health. Such athletes also believe that ideology biases the public’s view. They
liken it to medical marijuana, where people may be pro or con before they learn
the real facts.
Although it’s possible that low dosages of steroids by older adults aren’t harmful,
the way most athletes take steroids and growth hormone for positional advantage
is not in such low dosages. And such athletes secretly stack and are surely not
carefully monitored by physicians.
Breast Enhancements. Many enhancements are not studied first in randomized
controlled trials, and as a result, problems often emerge later. For example, in the
early 1960s, surgeons began implanting in women silicone-filled rubber bags, either
between the chest wall and the pectoral muscles or between pectoral muscles and
the breast. Dow Corning manufactured these bags. A decade later, surgeons used
a less viscous silicone gel and a thinner sac, resulting in more ruptures.
In 1995 and after three decades of such implants, 400,000 women registered as
potential claimants in 20,000 lawsuits against Dow Corning.11 In 1998, because of
costs of defending itself against these lawsuits, Dow Corning filed for bankruptcy
reorganization. To settle all claims against it, Dow agreed to compensate women for
removal of breast implants or for ruptures of silicone in the implants.
After these lawsuits, surgeons started to use saline-filled bags. However, even
this procedure led to major complications, including capsular contractures, when
the rubber sac tightens and squeezes the saline, causing leakage from the
capsule.
All the class action suits in federal courts came to a head under the late federal
judge Sam C. Pointer, Jr. in Birmingham, Alabama, who in 1998 appointed four
independent experts to review claims that the implants harmed women. These
court- appointed masters concluded that medical evidence did not show that the
saline implants caused any serious diseases. In 1999, the Institute of Medicine con-
cluded the same, stating that although implants caused local scarring and hardening
of surrounding tissues, they did not cause serious disease.12 Other large studies
around the world came to the same conclusions.
Even if breast implants don’t cause disease, many women didn’t know enough
before they got them. In one survey in 2007, 40 percent of women with implants
believed that, before they had their surgeries, they should have learned more about
their complications.13
In one study of 100 women who had their implants removed, rheumatologists
diagnosed autoimmune or rheumatic disease in 18 of them. In this class of women,
75 percent had lost some sensitivity in their nipples, and 25 patients had lost all
sensation.14 These women had 186 implants removed, and of these, 57 percent had
failed by rupturing or leaking, and bacteria had infected 42 percent.
All implants eventually need to be replaced. Even with the best, third-
generation implants, after 10 years 15 percent of women have implants replaced.15
Did most women who had implants years ago get informed consent about this?
Did they know that women who smoke have twice the rate of complications as
nonsmokers?16 That for women getting experimental or premarket implants at
discounted fees, after three years, the rate of repeat operations runs as high as
20 percent?17
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400 Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)
Bad Effects of Legalization
There is an exposure effect in legalizing banned drugs in sport. Yes, maybe 10 percent
of football players in America use steroids, but if steroids were allowed, 90 percent
would use them. And with that greater public exposure, and probably stacking,
many more problems would occur.
Legalization will ramp up the arms race. When medical marijuana was legalized
in Colorado, hundreds of vendors sprang up overnight, including vending machines
that dispensed marijuana to those with prescriptions. Liquor stores are ubiquitous
in many poor communities, competing with shops offering payday loans, EZ Pawn,
and fast cash for car titles. Do we want the poor similarly victimized by marijuana
head shops on every other corner?
In sports, instead of a few athletes becoming addicted and injured, most athletes
would become so. This makes us raise an even deeper question: What is the true
purpose of sport? To win at all costs? Or to exercise, compete, have fun, and enjoy
fellowship with others?
The Role of Physicians
Another issue in enhancement concerns the role of the physician. If athletes’ taking
enhancers is cheating, then physicians providing enhancers to athletes is also cor-
rupting, both of medicine and sports.
Although medicine is too elastic to rigidly uphold any distinction between ther-
apy and research—where one is a proper, the other, an improper goal—it is not too
elastic to ignore the distinction between what is in the rules and what is not.
In 2010 in New Jersey, 45-year-old physician Joseph Colao wrote prescriptions
for anabolic steroids for 248 police officers and firefighters.18 Although less than 1
percent of men suffer from any hormonal condition requiring steroids, Dr. Colao
colluded with these men to get group medical coverage to pay. (He also quickly
transformed himself into a hulk by taking steroids but suddenly died in 2010 of
heart failure.)
Arne Ljungqvist, chairman of the International Amateur Athletic Federation’s
anti-doping commission, writes that providing prescription drugs to healthy adults,
drugs meant for therapeutic purposes, is “medical malpractice.”19 That statement is
too strong for most drugs, for example, Viagra, but not for purposes of breaking
the rules in competitive sports to gain positional advantage.
Given the medical dangers discussed in this chapter, physicians who enable
such men to bulk up are corrupt. Fake bodily enhancement is a two-way illicit street,
bringing down both those who prescribe and those who get steroids, growth hor-
mones, and other muscle-producing substances.
Disability and Enhancements
In his Theory of Justice, philosopher John Rawls notes that mere equality of oppor-
tunity does not usually guarantee justice, because it is like having superior athletes,
normal people, and people in wheelchairs all line up at the starting line and then
allowing the fastest to win. But what people bring to the starting line of society’s
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Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 401
race for income, prestige, and other goods is not usually up to them. Life gives some
great genes; others, great beauty or wealth; still others, high intelligence or extraor-
dinary motivation; finally, Rawls says, one of the greatest sources of all of inequality—
although we rarely think of it this way—is the family, and in particular, whether a
child has two loving parents, no parents, or dysfunctional parents.20 Having a good
family behind one after a serious mistake in college is often the difference between
later success or failure.
In this text, we have already discussed some ethical issues about people with
disabilities: In the discussion of Elizabeth Bouvia and Larry McAfee, whose deci-
sions to die seemed driven in part by lack of good resources to help them live
normally; in discussing treatment of impaired newborns, whose prognosis is often
much better than had been predicted at birth, leading disability advocates to suspect
prejudice by physicians; and in mentioning genetic abortions, where parents choose
to abort rather than have a child affected by genetic conditions such as Down syn-
drome, or spina bifida, or muscular dystrophy, a trend that disability advocates
worry might be stealth eugenics.
This final section brings in disabilities in yet another way by asking: What is
normal and who defines it? For example, in 1900, the average English male was
5 feet, 5 inches, but in 2000 was 5 inches taller. In Holland recently, 6 feet has become
the average male height. In bioethics, one controversy centers on giving short children
growth hormone to achieve average height, and obviously a child destined to be
merely 5 feet in Holland might be considered a candidate for such hormones.
Historically and biologically, the body has limited what a man or woman can
do, but medicine often finds a way around such limits. Consider infertility, which
once was thought impossible to overcome and led to the death of many a childless
queen. But now, infertility could be considered a disability that reproductive med-
icine allows many men and women to overcome (and reproductive cloning might
be one more step in such advances).
In some quarters, also, pressure exists for every man and woman to approxi-
mate a cultural ideal of beauty and strength, and a part of medicine developed to
cater to such wants. With the right dermatologist, dentist, and cosmetic surgeon—
and sometimes, endocrinologist and psychiatrist—a 70-year-old man or woman can
look, feel, and act like 50.
Some push back against such pressures. We saw such pushback in Chapter 12,
when some parents, such as those who raised the conjoined Hensel twins, resisted
urges to allow separation surgery on their girls, educating them instead to see
themselves as normal. Some deaf parents have similarly resisted the push to give
every deaf child a cochlear implant. They have defended their decision to keep a
child deaf in an interesting way.
Consider Robert Sparrow, who argues that perhaps medicine should not strive
to cure deafness, which he compares to genocide, but instead medicine and society
should see deaf people as a “minority cultural group” that contributes to the wider
society and that needs resources to flourish. A cochlear implant, then, “represents
an attack on the culture of the Deaf, because it seeks to ensure that deaf children
grow up to use a spoken language rather than the signed languages of the Deaf. …
[This] controversy therefore involves questions about the nature of disability and
the definition of ‘normal’ bodies. …”21
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402 Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)
If deafness is a culture and not a disability, then depriving a child of it is a
harm to that child in the same way that courts have ruled that a Native American
orphan should be, if at all possible, raised in a culture of the First Peoples rather
than in a homogenized household.
This is a fascinating and powerful argument, especially because lack of hearing
could be seen as the organizing principle of Deaf Culture, and as such, depriving
a child of participating in that culture would be an important loss.
Defenders of cochlear implants might reply that this argument confuses the
good-of-the-child with the good-of-the-family. Surely, they argue, it is better to hear
than not to hear; surely it is better to see than not to see, and so on. Moreover, it
is well known that children at an early age can learn multiple languages; so why
not give an infant the implant, then teaching him both verbal and sign languages?
That way the child can participate in both cultures.
What is interesting, however, about this line of thought, and the attitude of the
Hensels, is flipping the connotation from something bad to something good, from think-
ing of deafness not as a loss but as a gain, from thinking of being conjoined not as an
impediment but as a special bond, and from thinking of any “disability” not merely as
a lack of some function but instead as a way of participating in a different form of life.
Overall, in thinking about enhancements and disability, we might think of two
gradients (or, if you prefer, continuums). The first sees a broad spectrum from lack
of function to normal function to heightened function. Consider not being able to
run, being able to run normally, and being able to run 1 mile in less than 4 minutes.
A second gradient is semantic and conceptual: What superficially appears to be a
defect, for example, sickle cell disease, from another perspective could be a bonus,
for example, in protecting against malaria. Having a child bound for life to a wheel-
chair might be considered by many families as a burden, but for some, it could be
a way of being bound together, all centered on that wheelchair bound child.
Conclusion
Enhancement medicine is an expanding, profitable area of medicine rife with ethical
challenges. For some, its providers and customers will be seen as sleazy, and if
things go wrong, people will get what they deserve. Proponents of enhancement,
both patients and physicians, see themselves on the cutting edge of a new
patient-controlled, autonomous world, where caveat emptor rules, and medicine has
developed a true, cash-and-carry marketplace.
FURTHER READING
Ronald Bailey, Liberation Biology: The Scientific and Moral Case for the Biotech Revolution,
Amherst, NY: Prometheus Books, 2005.
Carl Elliot and Peter Kramer, Better than Well: American Medicine Meets the American Dream,
New York: Norton, 2004.
John Evans, Playing God: Human Genetic Engineering and the Rationalization of Public Debate,
Chicago: University of Chicago, 2002.
Francis Fukuyama, Our Posthuman Future: Consequences of the Biotechnology Revolution, New
York: Farrar, Straus and Giroux, 2002.
pen07945_ch18_392-404.indd 402 9/8/16 9:52 AM
Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 403
Ronald Green, Babies by Design: The Ethics of Genetic Choice, New Haven, CT: Yale University
Press, 2007.
Jürgen Habermas, The Future of Human Nature, Polity, London, England, 2003.
John Harris, Enhancing Evolution: The Ethical Case for Making Better People, Princeton, NJ:
Princeton University Press, 2007.
John Harris, Wonderman and Wonderwoman: The Ethics of Human Biotechnology, New York:
Oxford University Press, 1992.
James Hughes, Citizen Cyborg, Boulder, CO: Westview Press, 2004.
Peter D. Kramer, Listening to Prozac, New York: Viking, 1993.
Gregory Pence, How to Build a Better Human: An Ethical Blueprint, Lanham, MD: Rowman &
Littlefield, 2012.
Michael Sandel, The Case against Perfection: Ethics in the Age of Genetic Engineering, Cambridge,
MA: Harvard University Press, 2007.
Julian Savulescu, B. Foddy, and M. Clayton, “Why We Should Allow Performance Enhancing
Drugs in Sport,” British Journal of Sports Medicine, vol. 38, 2004, pp. 666–670.
Gregory Stock, Redesigning Humans: Our Inevitable Genetic Future, New York: Houghton
Miflin, 2002.
Eric Wilson, Against Happiness, New York: Farrar, Straus & Giroux, 2008.
President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness,
Washington, D.C.: Dana Press, 2003.
DISCUSSION QUESTIONS
1. Is enhancement always cheating? What if no one else is affected? Does it make
sense to say one can “cheat oneself” when one is fully aware of the conse-
quences and freely chooses them?
2. Is there such a thing as natural norms or natural limits that should not be trans-
gressed? Does cosmetic surgery do this? What about a person who wanted his
or her face remade to look like a cat or dog? Would it be ethical for a plastic
surgeon to do this?
3. If doping and steroids are legalized, won’t athletes just search for other enhance-
ments to gain positional advantage? In other words, would legalization really
solve the problem of cheating in sports?
NOTES
1. Jamey Keaten, “Tour Rocked Again by Doping,” Associated Press, Birmingham News, July 18, 2008,
p. 8D.
2. “ADHD: Help is On the Way,” St Louis Psychologists and Counseling Information and Referral,
http://www.psychtreatment.com/adhd.htm.
3. Lawrence Diller, Running on Ritalin: A Physician Reflects on Children, Society and Performance in a
Pill, Random House, New York, 1998.
4. Center for Drug Evaluation and Research, Food and Drug Administration, “One Year Post-Pediatric
Exclusivity Post-Marketing Adverse Event Review Drug Utilization Analysis,” June 20, 2007, http://
www.fda.gov/ohrms/dockets/ac/07/briefing/2007-4325b_04_06_Modafinil%20Use%20Review .
5. “Cops Eye ‘Roid Rage in Wrestler’s Murder-Suicide,” Associated Press, June 27, 2007.
6. http://espn.go.com/classic/biography/s/Alzado_Lyle.html.
7. Julian Savulescu, J. Foddy, and M. Clayton, “Why We Should Allow Performance-Enhancing Drugs
in Sport,” British Journal of Sports Medicine, 38 (2004), pp. 666–670.
pen07945_ch18_392-404.indd 403 9/8/16 9:52 AM
http://www.psychtreatment.com/adhd.htm
http://espn.go.com/classic/biography/s/Alzado_Lyle.html
http://www.fda.gov/ohrms/dockets/ac/07/briefing/2007-4325b_04_06_Modafinil%20Use%20Review
http://www.fda.gov/ohrms/dockets/ac/07/briefing/2007-4325b_04_06_Modafinil%20Use%20Review
404 Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)
8. Carl Elliott, Better than Well: American Medicine Meets the American Dream, Norton, New York, 2004.
9. Eric Wilson, Against Happiness: In Praise of Melancholy, Farrar, Straus and Giroux, New York, 2008.
10. Christopher Clarey, “After a Year and Half, A Warning Gives Way to a Doping Crisis,” New York
Times, March 14, 2016, p. D3.
11. “Breast Implants on Trial ‘Chronology of Silicone Breast Implants’,” Frontline (Public Broadcasting
Show), http://www.pbs.org/wgbh/pages/frontline/implants/cron.html.
12. Safety of Silicone Breast Implants, Institute of Medicine, 1999.
13. Harris Interactive, “Patients Agree They Should Have Done More Homework Before Surgery, ASPS
Survey Reveals,” March 5, 2007.
14. W. Peters, “An Outcome Analysis of 100 Women after Explanation of Silicone Breast Implants,”
Annals of Plastic Surgery 39, no. 1 (July 1997), pp. 9–19.
15. J. K. McLaughlin, “The Safety of Silicone-Gel Breast Implants: A Review of the Epidemiological
Evidence,” Annals of Plastic Surgery 59, no. 5 (November 2007), pp. 569–580.
16. C. M. McCarthy et al., “Predicting Complications Following Expander/Implant Breast Reconstruc-
tion: An Outcome’s Analysis Based on Preoperative Clinical Trials,” Plastic Reconstructive Surgery
121, no. 6 (June 2008), pp. 1886–1892.
17. J. B. Tebbets, “Achieving a Zero Percent Reoperation Rate at 3 Years in a 50-Consecutive-Case
Augmentation Mammoplasty Premarket Approval Study,” Plastic Reconstructive Surgery 118, no. 6
(November 2006), pp. 1453–1457.
18. Amy Brittan and Mark Mueller, “New Jersey Doctor Supplied Steroids to Hundreds of Law Enforce-
ment Officers, Firefighters,” New Jersey Star-Ledger, March 9, 2010.
19. Arne Ljungqvist, statement at a UNESCO Social and Human Sciences Conference to examine the
future of the fight against doping, October 21, 2009.
20. John Rawls, A Theory of Justice, Harvard; Belknap Press, 1971, p. 74.
21. Robert Sparrow, “Defending Deaf Culture: The Case of Cochlear Implants,” Journal of Political Phi-
losophy 13, no. 2 (2005), pp. 135–152.
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http://www.pbs.org/wgbh/pages/frontline/implants/cron.html
C H A P T E R 1 9
Ethical Issues in Treating
Alcoholism1
Disputes among Alcoholics Anonymous, Kant,
Neuroscience, Genetics, Social Science, and Fingarette
Whether discussing terrorism, domestic inequality, or medicine, debates are
often philosophical without being explicitly identified as such. Over the past dec-
ades, millions of people have become addicted to heroin, opiates, methampheta-
mines, cocaine, and alcohol, with ensuing debates raging about how to help such
people kick their addictions. This chapter explores how these debates are philo-
sophical, with proponents on some sides often seeing those on the other side as
naïve, ignorant, or puritanical.
Addiction has become an all-too-common fact of modern life, rehabilitation
medicine has exploded (with some programs charging $50,000 a month), and
addicted patients frustrate physicians. The National Institute on Alcohol Abuse and
Alcoholism estimates that 18 million Americans have alcohol use disorder, and from
2002 to 2013, the number of Americans admitted to rehab programs for addiction
to opioids quadrupled, as did deaths from heroin overdoses.2 A 2016 medical survey
claimed that “20 to 22 million [Americans] are addicted to alcohol or other drugs,”3
and another survey then found that almost half of Americans knew a relative or
friend who was an addict.4
This chapter focuses on one kind of addiction, alcoholism, focusing on the
famous case of Ernie Crowfeather. It contrasts how Kant, Alcoholics Anonymous
(AA), Herbert Fingarette, sociologists, neurobiologists, and geneticists conceptualize
alcoholism and individual responsibility.
THE CASE OF ERNIE CROWFEATHER
After a weekend of binge drinking, Ernie Crowfeather, a 26-year-old half-Sioux,
half-white man, presented in the emergency room (ER) of Ellensburg, Washington,
in October 1968, coughing up yellow sputum and blood, with pain in his left kidney.
“Binge drinking” describes two to seven days during which a person repeatedly
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406 Chapter 19 Ethical Issues in Treating Alcoholism
drinks to the point of intoxication, during which he or she gives up his or her usual
activities and obligations.5
Upon work-up, physicians diagnosed a urinary tract infection and anemia in
Ernie Crowfeather. After giving him antibiotics, they sent him home. Over the next
several weeks, Ernie continued to drink heavily. What is “heavily”? In his case and
on most nights, two six-packs of beer. Drinking the same way each day, he arrived
three weeks later at the same ER, complaining of weakness, nausea, and fatigue.
(Under Emergency Medical Treatment and Active Labor Act [EMTALA], federal law
required physicians to keep him until he was stabilized.)
The liver filters out most of the toxic by-products of alcohol, but filtering was
not enough to help his one remaining kidney (because of an accident, one had been
previously removed). He developed headaches, swollen hands and feet, and sud-
denly gained weight. When he developed intractable vomiting, physicians admitted
him to the hospital.
On admission, his blood urea nitrogen (BUN) levels were abnormally high,
above 100, and his urine output was low, about 150 ml every 24 hours. Based on
these symptoms, doctors suspected renal failure and transferred him to the Univer-
sity Hospital for dialysis.
Over the next three months, Ernie had many problems: encephalopathy (brain
swelling), clotting, infections, near cardiac failure, lots of pain, bloody urine, and
possible renal cancer, necessitating biopsies. His physicians called him “a medical
disaster.”
Because peritoneal dialysis in 1968 carried fewer complications than hemodialysis,
physicians used it on Ernie, but they had to continually cut new openings for tubes into
his peritoneal cavity. These openings frequently became infected, perhaps because of
Ernie’s poor compliance with medical routines. Had Ernie been more compliant, sur-
geons could have stitched in him an indwelling shunt and then Ernie would have been
eligible for a home dialysis machine, but his drinking, his lack of personal responsibility
for his health, and his insistence that others dialyze him precluded this possibility.6
When physicians started hemodialysis on Ernie, he experienced clotting at both
the cannula (tubing) site and in his remaining kidney. Then he developed a pericar-
dial effusion or fluid in the pericardium (a thick fibrous sac surrounding the heart).
A pericardium filled with fluid competes with heart muscles for the same space and,
if swollen enough, compresses the heart’s left ventricle and prevents it from refilling,
causing (potentially fatal) cardiac tamponade (compression of the heart). So Ernie’s
physicians inserted an external chest tube to drain this fluid, and he went back on
peritoneal dialysis. Through a renal biopsy, physicians discovered that his kidney had
intravascular coagulation, a serious condition where blood clots inside veins.
This condition, and the general difficulty at this time of maintaining Ernie on
dialysis, led them to decide that Ernie required a kidney transplant. Had it worked,
the transplant would have solved many of Ernie’s medical problems.
Physicians who considered Ernie Crowfeather for a transplant had to consider
many nonmedical factors about him, including alcoholism, being on parole for
armed robbery, two common-law marriages, and he had a child who he did not
support financially. Though the rest of his family seemed responsible and cared
about Ernie, Ernie himself would likely not stop drinking and hence would not be
able to take care of himself on dialysis.
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Chapter 19 Ethical Issues in Treating Alcoholism 407
Seattle’s God Committee (see Chapter 11) rejected Ernie Crowfeather for a
home dialysis machine. It caught a lot of flak for doing so from critics, who thought
it was biased against Native Americans and against lower-class alcoholics.
By all accounts, Ernie was a charming person who was liked by physicians,
staff, and members of the God Committee. Eventually, a group of physicians and
leaders of local charities found Ernie a machine by fabricating a research protocol
particular to Ernie at another facility, University Hospital.
During the 30 months that Ernie was a dialysis patient in hospitals around
Seattle, physicians rescued him several times in ways they never did for healthier,
more compliant patients. Why? In part because Ernie was half-Sioux; in part because
he was charming and what his sister called “a con man.” Not only did physicians
bypass the God Committee to get Ernie a transplant, they jumped him ahead in
the queue to try to get him a kidney transplant.
When that failed and money ran out, two Native American medical profession-
als and a Jewish philanthropist spurred the Seattle-area Native American commu-
nity to rally around Ernie and give funds for his dialysis, which they did. All in all,
Ernie received an extraordinary amount of time and money—the equivalent of mil-
lions of dollars in today’s money—for a medical treatment that he was ambivalent
about receiving.
In speaking of how physicians dreaded the point where they would simply have
to turn Ernie away, Dr. Scribner said:
Why can’t we figure out a way to terminate a patient [from dialysis] when it seems
reasonable to do so, when he’s indicated that he wants it, too. It really isn’t fair to
a person to prejudge his ability to cope with dialysis. And yet we do this because
we’re afraid to get locked into a situation we won’t know how to handle. We can’t
get out once we start. But for some reason, if you don’t start a guy, if you don’t get
really involved with him, the fact you know he is going to die, and then does,
doesn’t seem to bother you so much. But once you’ve seen him on the machine,
and walking around, then the thought of not dialyzing him and having him die just
becomes overpowering.7
Consistently noncompliant throughout his 30-month involvement, not only did
Ernie kept on drinking, but during his last months, he also sought narcotics and
barbiturates and refused to learn home dialysis. Physicians spent a lot of money
and time on this one person, while other anonymous people died. Moreover, as
Scribner said in another context, 95 percent of the others would have done well
and learned home dialysis.8
Nephrologists in Seattle tried repeatedly to get Ernie Crowfeather to change his
ways, to stop drinking, and to adopt healthy living habits so he could live on hemo-
dialysis. But he wouldn’t.
Ernie’s final day came on July 29, 1971. Eleven days before, after 30 months of
being cut and recut painfully for dialysis, after money raised for him had run out,
and in order to get money for more treatment, while drunk, he had robbed a Hilton
hotel. Arrested immediately and released for dialysis, he never went to jail. A week
later, he intercepted a check for $2,000 meant to pay his bills, cashed it, and paid
off some debts to his second wife (by whom he had a second child) and to some
friends.
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408 Chapter 19 Ethical Issues in Treating Alcoholism
He then checked into a remote motel outside Seattle (as he told his sister later)
“to drink myself into oblivion.” Missing his scheduled dialysis appointments, his
friends began searching for him to no avail. In his final phone call, he said, “I’m so
alone. I can’t go back to University Hospital, because they won’t help me anymore.”
Ernie’s sister figured out where he was and raced to find him. When she did,
he was sick from having missed dialysis for several days and from his drinking. She
got him alive to the local hospital, but at 11 pm that night, he died.
Three months after Ernie’s death, his story made the front page of the New
York Times. An article by physician-reporter Lawrence K. Altman began:
SEATTLE, Oct. 23 [1971]—Ernie Crowfeather, a bright, charming part Native Amer-
ican with a history of personal instability and brushes with the law, died recently
at the age of 29 after he refused life-supporting therapy.
By what was regarded as a suicide, Ernie averted the frightening possibility
that his doctors would have had to purposefully turn off, for lack of funds and
because of his irresponsibility, the artificial kidney that for two years had kept him
alive on public money totaling $100,000.9
Free Will
Did Ernie have free will? Certainly no one forced him to put a beer to his lips. On
the other hand, some claim that a powerful disease controlled him, over which he
had no control, much like the disease of heart failure or schizophrenia. Humans
have debated the existence of free will for millennia.
A key assumption of science is that every event has a cause. In medicine, if a
person’s skin turns yellow, physicians would be incompetent if they did not assume
that some change in the patient’s body caused this condition (most commonly, a
problem with the patient’s liver).
Recently, medicine has increasingly looked for genetic factors. Behavior previ-
ously thought to be voluntary, such as sexual attraction to a member of one’s own
sex, is now thought to be determined by genes.
A similar assumption can be made about the mind: In psychology, researchers
assume that each mental event has a cause. Whether investigating relations with
parents in early childhood, classical and operant conditioning, social roles and
expectations, or how the computer-like brain processes data to generate actions,
psychologists seek causes of our actions.
For both the body and mind, researchers do not assume a mysterious entity,
free will, housed in some equally mysterious entity, the soul or mind. Instead, they
assume that every action has a cause. Moreover, they assume that similar humans
will act in similar ways from similar causes.
Social psychologists clearly suspect that humans possess less free will than
humans suppose. In an often-cited example, social psychologist Philip Zimbardo cre-
ated a mock jail in the basement of a building at Stanford University in California
and enrolled students in (what they were told was) an experiment about jails, pris-
oners, and guards.10 In reality, the experiment was about social roles and authority.
Half the students became prisoners in cells and the other half guards. Within
a short time, the powerful images of guards from movies such as Cool Hand Luke
and Escape from Alcatraz provided a powerful model into which student-guards easily
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Chapter 19 Ethical Issues in Treating Alcoholism 409
fell. Almost immediately, they began to abuse the student-prisoners. Thirty years
later, the abuse of Iraqi prisoners by American military personnel in the Abu Ghraib
jail in Baghdad showed the continuing relevance of Zimbardo’s work.
But American citizens and military courts assumed that the abusive military
personnel in Iraq could have chosen otherwise. They assumed the soldiers had free
will to act decently toward Iraqi prisoners. Moreover, other military personnel over-
came the power of the role of abusive guards and acted well toward prisoners.
So how free are people to overcome genetics, early childhood, social condition-
ing, and social roles? More specifically, when it comes to their own health, how free
are people to choose?
Historically, psychiatrist Thomas Szasz has accused psychiatry of undervaluing
free will by making every wrong decision of lifestyle a mental illness.11 Ivan Ilych
in the 1970s also decried a similar “medicalization” of health that took away from
patients control over their lives and deaths.12 More recently, physician Nortin Hadler
in The Last Well Person accuses the medical system of undervaluing patients’ ability
to heal themselves without medical intervention.13
Is Alcoholism a Disease?
Ancient people learned that fermented juice from grapes, potatoes, and other fruits
and vegetables produced an intoxicating brew. Some ancient Greek worshippers of
Dionysus thought that inebriation comes as a gift from their God and celebrated
accordingly. About the same time, people began to notice that some people liked
this brew too much.
In Europe and colonial North America, people drank a lot of wine and beer,
because they did not have safe, clean water. Nevertheless, people came to understand
the dangers of alcohol and preachers soon moralized against drinking. The traditional
free will view held that anyone of good moral character could stop drinking. Today, this
is called the cold turkey view, meaning that a person can simply and suddenly decide
to stop drinking and hold out against temptation by sheer force of willpower.
Some psychiatrists reject free will about alcohol. They believe that predisposing
genes, influences in early childhood, social stress, and physical addiction create a
specific disease, called alcoholism.
AA, an organization dedicated to helping people stop drinking alcohol, com-
pletely agrees with this perspective. It holds that:
… alcoholism is an illness, a progressive illness, which can never be cured. But
which, like some other diseases, can be arrested. Going one step further, many
members of Alcoholics Anonymous feel that the illness represents the combination
of a physical sensitivity to alcohol and a mental obsession with drinking, which,
regardless of consequences, cannot be broken by willpower alone.
Before they are exposed to Alcoholics Anonymous, many alcoholics who are
unable to stop drinking think of themselves as morally weak or, possibly, mentally
unbalanced. The concept of Alcoholics Anonymous is that alcoholics are sick people
who can recover if they will follow a simple program that has proved successful for
more than one and a half million men and women.
Once alcoholism has set in, there is nothing morally wrong about being ill. At
this stage, free will is not involved, because the sufferer has lost the power of choice
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410 Chapter 19 Ethical Issues in Treating Alcoholism
over alcohol. The important thing is to face the facts of one’s illness and to take
advantage of the help that is available. There must also be a desire to get well.
Experience shows that the Alcoholics Anonymous program will work for all alco-
holics who are sincere in their efforts to stop drinking; it usually will not work for
those not absolutely certain that they want to stop.14
We shall call this the disease model of alcoholism. According to this view, Ernie
Crowfeather did not really choose to drink heavily. Once he started drinking, he
fell down a downward path to alcohol addiction, and he could not have done oth-
erwise. Once he took his first drink, his fate was sealed.
In this model, the exact cause of Ernie’s disease, whether genetic, physiological,
neurological, social, or psychological, doesn’t matter. The important fact is that
Ernie had a disease and had no control over his actions. Sadly, he could not stop
drinking, even to save his life.
The disease model logically implies several things. First, if alcoholism is a dis-
ease, then alcoholics cannot simply decide not to drink. Free will alone is powerless
against alcohol, and alcoholics need help in conquering their disease, especially
medical help such as drugs to ameliorate symptoms of withdrawal from alcohol.
Second, if alcoholism is a disease, then alcoholics should not be blamed for
being sick. Leprosy strikes patients down, regardless of their virtue, and people
should not be faulted for getting such diseases. To do so is to commit the classic
moralistic sin of blaming the victim.
Third, if alcoholism is a disease, then people with this disease should be called
“patients” and should be treated like any other kind of patient. That is, they should be
treated in a kind of institution called a “hospital” or “rehabilitation center,” and the
people treating them should be “physicians”—people specially trained to cure diseases.
Fourth, if alcoholism is a disease, medical insurance should cover its treatment.
Group medical insurance both protects us against unexpected illness and subsidizes
the sick by taxing healthy people. As such a moral enterprise, healthy nondrinkers
should pay these premiums to help sick people recover from alcoholism.
This kind of model involves professions of helplessness in the face of the disease
alone, requires both total honesty about one’s behavior and confronting others with
their deceptions, as well as calling upon others in a group for support.
The disease model of alcoholism has been powerful historically in developed
countries as well as in behavioral medicine. It has spawned various offshoots, such
as seeing various eating disorders as diseases (bulimia, anorexia, morbid obesity) as
well as certain kinds of compulsive behavior (sex addiction).
Sociologists on Alcoholism
In analyzing Ernie’s case in their classic of medical sociology, The Courage to Fail,
professors Renée Fox and Judith Swazey devoted a chapter to Ernie’s case. They
extensively investigated the patient who so haunted physician Belding Scribner, his
staff, and the God Committee. In their view:
Ernie’s response to his situation [his drinking, his non-compliance] was conditioned
by his social background and his personality traits. These same factors [his Sioux
background and personality] contributed to the ways physicians and the local com-
munity became involved in the case.15
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Chapter 19 Ethical Issues in Treating Alcoholism 411
During the time (1965–1975) when Fox and Swazey were writing, the environmental
model of disease ruled in medicine. (Today, explanatory fashion in medicine has
swung to the other way where the genetic model reigns supreme.)
For Fox and Swazey, social factors explain a person’s behavior more than any-
thing else. In Ernie’s case and in the staff’s reaction to him, they think his “Indi-
anness” mattered most.16
Many Americans feel guilty about the fact that white immigrants caused the
deaths of 90 percent of Native Americans, both directly through murder and through
forced marches to starvation and indirectly through introduction of diseases such
as smallpox and yellow fever (against which Native Americans had no immunity)
and theft of their lands by deception and broken treaties. Physicians in a state
whose largest city is named for Chief Seattle would have understandably felt some
guilt and made exceptions for this young, charming, half-Sioux male.
According to Fox and Swazey, as well as Ernie’s own mother, this half-white, half-
Sioux rebelled against his Native American ancestry, disliked the name “Crowfeather,”
and tried to “look white.” In addition to ambivalence about his Indianness, Fox and
Swazey stress that his father was absent most of the time and died early, that he was
one of six children, and that he was the only male in a female, Catholic household.
Ernie’s sisters said that as a smart, handsome but rebellious male child, Ernie often
“got his own way” with his “great ability to manipulate people and situations for his
own ends.” Fox and Swazey believe that his mother’s second marriage strongly influ-
enced him. After a bicycle accident left him without a kidney, his stepfather became
so angry at the care his mother lavished on Ernie that the marriage ended.
Ernie’s social situation deteriorated after this accident. Because he lost a kidney,
he could no longer compete in running events, football, or basketball, in which he
previously excelled.
After his mother’s divorce and his loss of a kidney, Ernie dropped out of high
school and tried odd jobs. Then he robbed a bar, got 22 months in reform school,
violated his parole, and got another 21 months for doing so. He spent most of ages
15 through 25 in jail, or out drinking, and living on the edges of criminality.
So these sociologists naturally believe that Ernie’s social background caused
him to drink, not his free choices. Any other half-Sioux, half-white, and single male
child in such a female family, deprived of his athletic prowess and powerfully labeled
as an “ex-con,” would turn to alcohol.
Neuroscience on Alcoholism and Addiction
Lately, the new kid on the block discussing alcoholism and addiction is the inter-
disciplinary field of neurosciences. Nora Volkow, penning an overview in a medical
journal, writes, “After centuries of efforts to reduce addiction and its related costs
by punishing addictive behaviors failed to produce adequate results, recent basic
and clinical research has provided clear evidence that addiction might be better
considered and treated as an acquired disease of the brain.”17
Notice the implied moral condemnation of anyone who disagrees with the claim
that addiction is a disease of the brain: “The concept of addiction as a disease of
the brain challenge deeply ingrained values about self-determination and personal
responsibility that frame drug use as a voluntary, hedonistic act.”18
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412 Chapter 19 Ethical Issues in Treating Alcoholism
For neurobiologists, the fundamental fact about addiction is the early, potent
release of dopamine in the ecstasy of the first high and the subsequent quest to
repeat it, despite the fact that continued drug usage triggers smaller and smaller
amounts of dopamine, such that addicts at some point no longer experience eupho-
ria. But then the second, biological process has been embedded: “In the addicted
brain, the antireward system becomes overactive, giving rise to the highly dysphoric
phase of drug addiction that ensues when the direct effects of the drug wear off or
the drug is withdrawn.”19 So even though “persons with addiction frequently cannot
understand why they continue to take the drug when it no longer seems pleasur-
able,” the answer is that the brain has changed and now “there is a correspondingly
intense motivational push to escape the discomfort associated with the after effects
of use.” And of course, all these impair “executive processes,” leading to many poor
judgments about family, work, and risk-benefit ratios.
Is this overly reductionist? Probably. And yet it may be true for the 2–10 percent
of people who use alcohols and drugs and become addicted. But it also means that
90–98 percent can tolerate alcohol and drugs without becoming full-blown addicts.
Geneticists on Alcoholism
Another scientific view of alcoholism comes from genetics. Some geneticists firmly
believe that destructive drinking such as that of Ernie Crowfeather stems not from
free will but from inherited genes. They usually argue that alcoholism is polygenic,
where more than one gene causes alcoholism. Mark Willenbring, director of treat-
ment research from 2004 to 2009 at the National Institute on Alcohol Abuse and
Alcoholism, claims that neuroscience shows that 60 percent of alcohol and drug
dependence is caused by genes.20
As an overview, consider what happens physiologically when a person drinks
alcohol. Basically, two important enzymes (proteins that catalyze reactions) begin to
work. When ingested into the body, ethanol converts to acetaldehyde, which then
converts to acetate.21 An enzyme called dehydrogenase enables these conversions.
Toxic to the body, acetaldehyde produces uncomfortable physiological responses:
headaches, facial flushing, or profuse sweating.22
Some people react quickly and intensely to alcohol (this is sometimes called “alco-
hol sensitivity”). When they ingest alcohol, they produce too much acetaldehyde and
not enough dehydrogenase. If they keep drinking, they build up a toxic level of acetal-
dehyde. For such people, their body’s negative response makes them avoid alcohol.
Some people (often Asians) have a mutation in dehydrogenase that prevents
acetaldehyde’s conversion to acetate. This mutation increases the body’s adverse
reactions to alcohol and lowers incidence of alcoholism. Asians have high alcohol
sensitivity, which causes a low level of alcoholism in them.
Supposedly, Native Americans should behave the same. Evolutionary genetics
says they originally migrated from Asia through Alaska. So they share most genes
with Asians.
But Native Americans have both a high sensitivity to alcohol and a high inci-
dence of alcoholism. Native Americans have a mutation and are not deficient in
aldehyde dehydrogenase. Not being able to metabolize acetaldehyde, alcohol makes
them flush and have headaches. But they still drink.
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Chapter 19 Ethical Issues in Treating Alcoholism 413
In a 2003 study in Human Genetics of 582 adult members of a southwest Native
American tribe, 85 percent of males met “the DSM-III-R criteria for alcohol-
dependence at some point in their lives.”23 Nearly 85 percent of adult males over
age 35 also had met the same criteria, and nearly 65 percent of them had engaged
in binge drinking. Nevertheless, all these Native American males also experienced
the kind of flushing that makes many Asians sick from drinking alcohol. So why
did these Native Americans keep drinking?
Geneticists don’t really know. They speculate that Native Americans may have a
genetic variant that makes them susceptible to dependence on alcohol. They think that
it’s a downward spiral for many Native Americans. After the first drink, geneticists
think a gene is activated that makes it almost impossible for them to stop drinking.
So geneticists believe Native Americans have an especially lethal combination
of genes regarding alcohol: first, genes that make them alcoholics, and second,
genes that make them unable to physiologically tolerate the effects of alcoholism.
As the neurobiological model says, at first they get high on alcohol, then it becomes
less desirable, then it makes them really miserable, and then they drink to escape
the misery that alcohol causes in them. Such seems to have been Ernie Crowfeath-
er’s downward path to his early death.
What about this view? It is currently fashionable to think that every human trait,
vice, or disease has a genetic basis. As mentioned, this is partly a fad. In the 1960s and
1970s, an opposite bias held sway that environmental factors caused most diseases.
While funding agencies today encourage scientists to search for genetic causes of cancer,
in the previous period they encouraged them to look for environmental carcinogens.
There is some reason to doubt the genetic explanation of alcoholism. What is that?
For some genetic diseases, if you have the gene for a lethal disease, you get the
disease regardless of what happens in the environment. Huntington’s disease, a
lethal neurological condition, is like that. For other diseases, you crave something,
and if it isn’t around, you seek it out. If alcoholism were like that, a person who
had never been exposed to alcohol would seek it out. Yet people raised in dry
countries do not seek out alcohol.
So, even if it’s genetic, alcoholism is a peculiar disease. Even if heavy drinking is
caused in part by genes, it is also true that alcohol must be introduced to the person
and be part of his or her environment. In groups of teetotalers, or societies where
alcohol is forbidden, people with predispositions to alcoholism never become
alcoholics.
More generally, we should ask what it means to say, “Alcoholism is gene-based.”
No pattern of familial inheritance, such as autosomal dominant or X-linked, has
been established across generations of families. Moreover, alcoholism can skip gen-
erations, such as children of alcoholics don’t drink. How can a gene-based disease
operate this way?
Kant on Human Dignity, Free Will, and Alcoholism
As discussed in Chapter 1, Immanuel Kant articulated an ethical theory that gave
a special moral standing to persons. Kant famously stated, “Act so that you treat
humanity, whether in your own person or in that of another, always as an end and
never as a means only.”24
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With this statement, Kant asserts that humans have intrinsic value, not deriv-
ative or extrinsic value. Kant recognized the duality of human nature, the fact that
humans combine both a physical nature, governed by laws of the natural sciences,
and a mental nature, the seat of rationality, free will, spirituality, and morality. As
a thing, a human body can be thought of as chemicals in motion and thrown out
of a window, such a thing obeys the laws of physics in falling to the ground. But
as a nonphysical person, a human is a much grander, more dignified kind of being.
It is important not only to understand what Kant thought about the value of
humans but also why. Humans are special because of several unique qualities. First,
they are rational, meaning they are capable of weighing reasons, evaluating evi-
dence, and reflecting on the best path to a goal. Second, they possess free will,
meaning they can rise above their animal nature, their psychological conditioning,
and their social roles to make genuinely free decisions. Third, they are capable of
rising above self-interest and doing the right thing, simply because moral duty
requires it. That is, they are capable of being true moral agents. Finally, they possess
a deep self (some would call this a “soul”) that is the subject of consciousness,
conscience, reflection, and free will, making humans unique in the animal kingdom.
For all these reasons, humans have moral value, unique in the universe.
All of these distinctive human qualities underlie the value of autonomy in
Kantian ethics, a value important in bioethics. In the context of drinking, Kant
believes humans can be “law-givers unto themselves” or give up on themselves,
treating themselves as things. But in doing the latter, they voluntarily destroy some-
thing that is part of their essence.
It does not matter to Kant if most humans abuse their natures and do not act
according to their highest parts. Even if most people voluntarily act irrationally,
selfishly, and as if they had no free will, it does not mean to Kant that some humans
cannot act correctly. Kant prefers to base his theory on what humans can achieve
and how they can act, not on how they actually act.
Because each human is special, all humans are special. From this simple truth,
enormous ethical obligations are generated. Each of us has a strict obligation to
treat other humans as fully autonomous, equal moral agents, to not harm other
humans, to go to the aid of injured humans, and, in all ways, to respect humanity
and persons therein.
Kant’s Critique of the Disease Model
For Kant, the most important flaw of the disease model is in treating persons as
mere things. That is, it treats Ernie as the cumulative result of the causal forces
acting on his body and personality, such that his drinking inevitably flows from
these causes. For Kant, this account loses the essence of persons—their rationality,
their conscious reflection, and their real choices.
At its heart, the disease model treats people as things and as if they have no
free will. They are victims of bigger forces that cause them to drink and not respon-
sible agents who made bad choices and who could make better choices in the future.
And that is precisely the second problem for Kant. People do have free will,
and to treat them as if they do not is to treat them badly, like animals or things,
and demean their humanity. Surely, they chose to drink, and for sure, they became
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Chapter 19 Ethical Issues in Treating Alcoholism 415
dependent on alcohol, but that doesn’t mean they forever lost their ability to choose
otherwise. People make choices every day, including the choice to buy another
bottle of whiskey. According to some of his statements, Ernie Crowfeather at times
agreed with Kant’s view.
Indeed, for Kant, AA contradicts itself, because its recovery program assumes
that each alcoholic has the power to choose to be sober. Moreover, when AA agrees
with Kant that alcoholics are responsible for their actions and should be treated as
such, isn’t it assuming a power to change?
And what about responsibility? You do not see members of AA testifying at
driving under the influence (DUI) of alcohol trials for manslaughter (where a drunk
driver killed someone) that the alcoholic should go free because he was not respon-
sible for his behavior.
Perhaps a kinder view of AA is to say that it assumes that free will is a necessary
but not a sufficient condition of kicking alcohol. But if so, then this is a different
kind of disease than, say, cystic fibrosis, where free will plays no role in contracting
the disease or getting free of it.
Finally, Kant’s theory emphasizes that the right thing to do is universalizable.
That is, we should generalize the rule we are acting on so that all of humanity can
and should act on the same rule. If we treat alcoholics as people who are not
responsible for their actions because they have a disease, then we should absolve
most of humanity because their actions also have prior causes.
But that method of treating humans is not only philosophically incorrect but
also morally reprehensible: It treats people as if they had no human dignity, no
rationality, no power of reflection, and, yes, no free will. To treat people that way
is false not only to real human nature but also to human dignity and worth.
Put differently, the disease model’s approach to alcoholism cannot be the real
solution to curing alcoholism, but, for Kant, is itself part of the real problem. It is part
of the problem, because it ignores the key fact that must occur for an alcoholic to
change—that he or she must consciously decide to change and to decide each day to
stay sober.25 So long as any model avoids this fact, it is doomed to failure.
That fact may explain why approaches to curing addictions that substitute one
substance for another (methadone for heroin, marijuana for alcohol, and a nicotine
patch for cigarettes) fail most of the time. Ignoring the centrality of free will in human
lives and morality explains the growing tendency to see everyone as a victim, whether
it be persecuted atheists, Christians, Muslims, Jews, scientists, minorities, or liberals.
Kant would despise this cultural fixation on victims, because it undermines
human dignity and freedom. In a certain real sense, if you make a person think he
or she is a victim, he or she will start to feel and act like one. On the other hand,
if you make the same person think he or she is autonomous and responsible for
him- or herself, he or she will start to feel and act that way. Kant’s insight is the
moral truth behind all programs that try to teach youth personal responsibility and
pride in exercising control over their lives and bodies. Interestingly, this is exactly
how one overview of addiction concludes:
… there is an important but restricted, sense in which the addicted individuals in
question are not “responsible” for their decisions regarding drug use. The high
likelihood of relapse means that, as a matter of clinical fact, they are usually not
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416 Chapter 19 Ethical Issues in Treating Alcoholism
accountable. At the same time, clinical experience also suggests that we should treat
addicted individuals as if they are responsible because that empowerment is often
crucial to their recovery.26
Fingarette’s Research
Philosopher Herbert Fingarette’s Heavy Drinking analyzes alcoholism differently.
Sympathetic to Kant, this modern philosopher empirically investigated whether
most alcoholics follow the road predicted by the disease model. In doing so, Fing-
arette came upon some interesting findings.
Fingarette concluded that many beliefs about alcoholism are false: Alcoholics
do not lose self-control, alcoholism fails the criteria of a medical disease, and alco-
holics retain free will. Fingarette looked at many clinical studies and statistical com-
parisons between various methods of treating alcoholics and concluded that
alcoholics choose to be heavy drinkers and are people who choose to make drinking
a “central activity” of their lives.27
He specifically denies AA’s central claim that alcoholism involves a specific pro-
gression of disease, where the alcoholic cannot change until he or she hits rock
bottom. Instead, he finds that most so-called alcoholics learn to moderate and con-
trol their drinking: They learn to eat before they drink, drink only at home and not
while driving, or drink alone to hide it from others. Almost 90 percent of drinkers
do not end up like Ernie Crowfeather: They experience bad things from drinking
(or addiction) and they change their behavior. Only a small percentage—somewhere
between 2 percent and 10 percent—tumble down the stairway to the uncontrollable
hell of hard addiction.
In a well-known study in genetics about drinking by Native Americans, although
the researchers implied that most of the Native American males they interviewed
were alcoholics, the researchers did note that “many of these participants were in
remission at the time of the examination” (my emphasis).28 Their alcoholism cannot
have been caused by several genes in the normal sense of “causation” and yet, at
the same time, many are in remission. Perhaps these Native American men learned,
like so many other heavy drinkers, to moderate their drinking. In any case, genes
are not causing alcoholism here in the same way that a genetic disease such as
Prader-Willi syndrome makes people crave food insatiably.
Fingarette argues that most heavy drinkers fail the AA criteria for
alcoholism-as-a-disease. As an example, he says that one in five Americans at any
given time drinks heavily enough to have alcohol-related problems, yet those people
do not consider themselves alcoholics. Nor do they meet all the criteria for the dis-
ease model: They do not miss work due to intoxication, do not have blackouts, and
have no obvious loss of memory.
Fingarette also denies that alcoholics lack free will over their drinking, citing
studies that show that alcoholics moderate their drinking based on the rising cost
of alcoholic beverages, an impending DUI court appearance, or the continuing
embarrassment of passing out in front of their teenage children. According to one
study done on hospitalized alcoholics who were given alcohol for performing a
specific, monotonous task, alcoholics choose to moderate their drinking based on
what they perceive as benefits and costs. In other words, the desire to drink first
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Chapter 19 Ethical Issues in Treating Alcoholism 417
can be resisted, second, can be moderated, and third, the harmful effects of the
desire can be reduced.
Fingarette also answers the argument that alcoholics can have self-control in a
hospital environment that they could not have at home: If the alcoholic can gain
self-control by being in a different environment, this implies that the loss of self-
control is not due to an internal disease but due to external situations, for instance,
job frustration or a poor home life.
Fingarette furthermore points out that if AA works because alcoholics attend
the meetings and abstain from alcohol, this implies that the alcoholic can exhibit
self-control. In other words, the treatment plan of total abstention can only work
properly if the alcoholic has sufficient self-control to abstain, which would be impos-
sible if the alcoholic lacked that self-control due to an unstoppable disease. Finally,
AA’s emphasis on abstention does not seem to be better for its members in the long
term than programs that emphasize moderate alcohol consumption.
Harm Reduction versus Moralism in Medicine
Perhaps because of its Puritan heritage, Americans generally pursue abstinence-only
policies in fighting addiction. Canada, Britain, and Europe pursue less drastic strat-
egies that try to reduce harms associated with various problems. The pragmatic,
harm reduction approach to medical problems sharply contrasts with a moralistic
“preaching” approach. The former has come to be called in medical circles (espe-
cially in Europe) the harm reduction approach, and the Harm Reduction Coalition
(HRC) lobbies for this approach worldwide.29
As we saw in Chapter 9 in discussing past moral battles about how to combat
infectious diseases, harm reduction parallels past moral debates in the history of
medicine, for instance, in combating syphilis, physicians debated combating “sin”
versus combating spirochetes. Later in combating AIDS, debates erupted about the
wisdom of giving drug-dependent patients clean needles for used ones.
So worldviews collide here. Harm reduction is pragmatic, nonmoralistic, and
focused on reducing associated bad consequences of deviant behavior rather than
eliminating the behavior itself or on moralizing about it. Its opponents see it as
amoral, relativistic, and, as a result, indirectly encouraging deviant behaviors.
Physician Alexander DeLuca, once chief of addiction medicine at St. Luke’s
Roosevelt Hospital in New York City, once ran the Smithers Addiction Treatment
and Research Center there. Hired as an abstinence-only advocate, his medical expe-
riences led him to embrace the moderation of HRC. At one point he decided that
most of the practice of medicine basically consists of harm reduction.
For example, the approach of Dr. Willenbring to treating alcoholism is to offer
brief intervention techniques and nonconfrontational therapy, as well as support on
drugs to treat depression, anxiety, and other disorders. Such a multifaceted approach
rejects the disease theory of alcoholism and tries to maximize a patient’s control
over his or her condition.30 Purists in AA or the cold turkey approach abhor his
tolerance of occasional use of marijuana or beer.
Of great interest, AA refuses to participate in scientific studies designed to
prove its effectiveness. In contrast, HRC’s methods have been extensively studied
and proved somewhat successful.
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418 Chapter 19 Ethical Issues in Treating Alcoholism
The two approaches differ dramatically in how they think about control. AA
emphasizes that the alcoholic has no control over his or her drinking and, to cease
drinking, must acknowledge a higher power. HRC emphasizes that the drinker can
control the consequences of his or her drinking, so it gives control to the person most
affected. This can be important in dealing with alcoholic drinking by college students.
Like battles over AIDS, genetics, reproductive rights, and assisted dying, battles
over the correct approach to alcoholism create ideological passions. William Madsen
and some AA defenders severely attacked Fingarette.31 60 Minutes later took Madsen’s
viewpoint in criticizing Mark and Linda Sobell, pioneering psychology professors in
addiction research, and implied that their approach had killed some of their patients.32
When Dr. DeLuca embraced the evidence-based HRC, St. Luke’s fired him.33
As another example of these passions, any defense of Kant’s view or harm reduc-
tion usually invokes strong responses by members of AA, who see their way as the
only way to stop drinking and who view these other approaches as enabling weak
people to continue drinking. What may be closest to the truth is that AA’s way works
well for a minority of heavy drinkers and its cold turkey, total conversion approach
may be the only approach that can help them. Having had such a method work, it
is difficult for AA members to believe that Kant or HRC could have any part of the
truth about drinking or that other methods might work for other drinkers.
Harm reduction also applies to other moral issues beyond alcohol, especially
about addiction. In Europe, it lies behind the approach to marijuana and many
addictive drugs, as well as to legalizing and regulating prostitution and gambling.
HRC tries not to eliminate an age-old behavior but to reduce harms associated with
it. Similar approaches could reduce harms associated with handguns, teenage preg-
nancy, smoking, steroids in sports, and malpractice in medicine. For example, one
University of Alabama at Birmingham (UAB) researcher has advocated switching
cigarette smokers who have repeatedly failed to quit to smokeless (chewing) tobacco,
arguing that most of the harms associated with cigarettes come from the smoke and
that the switch can prevent the onset of lung cancer or emphysema.34 The American
Lung Association and many pulmonary physicians hated this HRC strategy, cham-
pioning instead the cold turkey approach.
Compromises
How much free will did Ernie have? How much of it should physicians assume in
patients? Medicine assumes that every human event has a cause, and this assumption
has fueled its progress. Physicians once thought demonic possession caused schizo-
phrenia, or bad parenting, but no longer. People with neurofibromatosis, phenylke-
tonuria, and Huntington’s disease were stigmatized until we learned the genetic
causes of these diseases. Given this legacy, shouldn’t we presume that alcoholism is
polygenetically caused until we have overwhelming evidence to support free will?
From a sociological perspective, well-educated, healthy, intelligent, financially
secure, mentally well-balanced people, blessed with good supportive families seem
to have free will. In contrast, ignorant, sick, stupid, poor, and mentally ill people all
too easily become addicted to alcohol, nicotine, and other addictive substances.
So when it comes to a final decision, which way do we go? Do we say, yes, Ernie
had the free will to work or write, but not to go cold turkey and kick the bottle?
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Chapter 19 Ethical Issues in Treating Alcoholism 419
Free will could exist on a gradient where genes, early childhood, social envi-
ronments, and other influences could diminish or increase it. From that perspective,
the relevant question is not, “Are people free?” but rather, “To what degree was a
particular person at a particular time and place free?” For example, “When, if ever,
was Ernie free not to drink?” (Probably in high school before he lost his kidney.)
Kant’s view seems too extreme in postulating that each person has maximal
free will. He seems punitive to people in bad circumstances, not only about rejecting
alcoholism as a disease but also in rejecting degrees of free will. Kant seems to see
alcoholics as wrongdoers in the same class as liars and thieves. In this sense, Kan-
tian is a Puritan.
When an issue is so in doubt, do we want physicians to side with the Puritans?
Or do we want physicians to be nonjudgmental and to help those who want to be
helped? Do we want physicians or a God Committee of laypersons to decide that
people like Ernie are not worth a dialysis machine? Do we want physicians to be moral
judges and deny liver transplants to alcoholics? Is that really what physicians are for?
Conclusion
What, then, about moral blame? Should we blame Ernie Crowfeather for his death?
Did a disease like cancer kill him, such that at death his relatives could collect life
insurance, or did he voluntarily drink and commit suicide?
Answers here are not easy because the causes of alcoholism seem complex and
variable. Indeed, one could easily spend a semester on just a course about alcohol-
ism and addiction (e.g., we have not even touched on issues about race and class
and how they affect drinking and drug-usage—major topics in the literature).
Perhaps the best conclusion we should make is that, because it is an open
question whether alcoholics can quit, we probably should err on the side of com-
passion and not blame them for drinking.
And should alcoholism in medicine be seen as a disease? Maybe not. We should
not confuse the classic, AA version of alcoholism-as-a-disease with the more moderate,
controllable heavy drinking. Many people are heavy drinkers but not classic alcoholics.
And heavy drinking is probably, but not entirely, caused in part by a gene-based
predisposition to such behavior. Even so, such behavior leaves room for environ-
mental and familial causes, as well as a window for some free will.
As for Native Americans, they likely have a genetic tendency to alcohol depen-
dency that is toxic to them, but nevertheless, they still have some free will over
whether to take that first drink, whether to binge drink, whether to help or dis-
courage other Native Americans from taking a first drink, and whether to moderate
the harmful effects of their drinking.
Another thing we know is that the problems of addiction will remain. Recently,
Mexican cartels have flooded North America with cheap versions of Fentanyl, a
powerful synthetic painkiller “up to 50 times more powerful than heroin and 100
times more potent than morphine,” which acts almost instantaneously on the brain,
such that addicts collapse even before withdrawing a needle (and hence before
naloxone, which reverses an overdose’s lethal effects, can be given).35
The one thing that has not been emphasized in this chapter is how much this
issue affects ordinary physicians in primary practice. As physician-essayist Abigail
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420 Chapter 19 Ethical Issues in Treating Alcoholism
Zuger writes, “On some days, [in our hospital in New York City] it seems as if we
spend all our energies managing not the conditions we are trained to manage but
on the addictions that complicate them.”36
DISCUSSION QUESTIONS
1. How much do you think Ernie Crowfeather was responsible for his drinking?
2. Do some people have a harder time stopping drinking than others? What fac-
tors make it harder for some people to stop?
3. Is Kant’s view too harsh on drinkers and addicts? Are they really free to quit?
4. Is the disease/neuroscience model too lenient on drinkers and addicts? Don’t
they have some responsibility for their actions? If not, why enter them in reha-
bilitation programs in the first place?
5. How does the harm reduction approach offer a compromise to the extremes of
Kant and the disease model?
6. Does Fingarette’s research suggest that much of the money spent on rehabili-
tation programs is wasted?
FURTHER READING
Herbert Fingarette, Heavy Drinking, Berkeley, CA: University of California Press, 1988.
Herbert Fingarette, Mapping Responsibility, Chicago, Illinois: Open Court, 2004.
Renée Fox and Judith Swazey, The Courage to Fail: A Social View of Organ Transplants and
Dialysis, rev. ed., Chicago: University of Chicago Press, 1978.
Gabrielle Glaser, “The Irrationality of Alcoholics Anonymous,” The Atlantic Magazine, March 2015.
Linda and Mark Sobell, Problem Drinkers: Guided Self-Change Treatment, New York: Guilford
Publishing, 1996.
Nora Volkow et al., “Neurobiologic Advances from the Brain Disease Model of Addiction,”
New England Journal of Medicine, vol. 374, no. 4, January 28, 2016, pp. 363–371
Alcoholics Anonymous, http://www.aa.org/.
American Society of Addiction Medicine homepage, http://www.asam.org/.
Genetics and Alcoholism, http://www.indiana.edu/˜rcapub/v17n3/p18.html, http://alcoholism.
about.com/od/genetics/.
NOTES
1. This chapter could easily be read with Chapter 11 on the God Committee, because it focuses on
its most famous patient and his issues with drinking. I am grateful to Ben Hippen, M.D., a kidney
transplant surgeon now practicing in Charlotte, North Carolina, and on the UNOS board, who
carefully critiqued an earlier version of this chapter when he was a fellow at UAB in 2005. I am
also grateful to G. Lynn Stephens, who originally introduced me to the work of Fingarette, and
also to Fingarette himself, who graciously sent me a copy of his Mapping Responsibility and who
answered questions about his work. I am also indebted to UAB professor Matt King for reading a
penultimate version of this chapter.
2. Gabrielle Glaser, “Rehab Rooted in Science,” New York Times, Feburary 23, 2016, p. D1.
3. Nora Volkow et al., “Neurobiologic Advances from the Brain Disease Model of Addiction,” New
England Journal of Medicine 374, no. 4 (January 28, 2016), p. 363.
pen07945_ch19_405-422.indd 420 9/8/16 9:52 AM
http://www.indiana.edu/
http://www.aa.org/
http://www.asam.org/
http://alcoholism.about.com/od/genetics/
http://alcoholism.about.com/od/genetics/
Chapter 19 Ethical Issues in Treating Alcoholism 421
4. Associated Press Poll, “Most Americans See Drugs as a Big Problem,” U.S. News and World Report,
March 26, 2016.
5. “Guidance for Authors on the Policy of the Journal of Studies on Alcohol Regarding the Appropriate
Use of the Term ‘Binge,’ ” Journal of Studies on Alcohol, http://www.jsad.com/page/instructions/binge.
6. http://kidney.niddk.nih.gov/kudiseases/pubs/hemodialysis/.
7. R. Fox and J. Swazey, The Courage to Fail, p. 300.
8. Ibid.
9. Lawrence K. Altman, “Artificial Kidney Use Poses Awesome Questions,” New York Times, October
23, 1971. Quoted from Fox and Swazey, The Courage to Fail, p. 266.
10. Martha Knisely Huggins, Mika Haritos-Fatouros, and Philip Zimbardo, Violence Workers: Police Tortur-
ers and Murderers Reconstruct Brazilian Atrocities, University of California Press, Berkeley, CA, 2002.
11. Thomas Szasz, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct, rev. ed.,
Perennial Currents, New York, 1984.
12. Ivan Ilych, Limits to Medicine: Medical Nemesis, the Expropriation of Health, Penguin, New York, 1976.
13. Nortin Hadler, The Last Well Person: How to Stay Well despite the Health-Care System, McGill-Queen’s
University Press, Montreal, Canada, 2004.
14. Alcoholics Anonymous World Services Inc., http://www.aa.org/ (accessed August 28, 2016).
15. Fox and Swazey, The Courage to Fail, p. 267.
16. Ibid., p. 268.
17. Nora Volkow et al., “Neurobiologic Advances … ,” p. 363.
18. Ibid., p. 364.
19. Ibid., p. 367.
20. Gabrielle Glaser, “Rehab Rooted in Science.”
21. E. Quertemont, “Genetic Polymorphism in Ethanol Metabolism: Acetaldehyde Contribution to
Alcohol Abuse and Alcoholism,” Molecular Psychiatry 9, no. 6 (June 2004), pp. 570–581.
22. D. W. Crabb, M. Matsumoto, D. Chang, and M. You, “Overview of the Role of Alcohol Dehydro-
genase and Aldehyde Dehydrogenase and Their Variants in the Genesis of Alcohol-related Pathol-
ogy,” Proceedings of the Nutritional Society 63, no. 1 (February 2004), pp. 49–63.
23. Connie Mulligan et al., “Allelic Variation at Alcohol Metabolism Genes (ADH1B, ADH1C, ALDH2)
and Alcohol Dependence in an Native American Population,” Human Genetics 113 (July 12, 2003),
pp. 325–336.
24. Immanuel Kant, Groundworks of the Metaphysics of Morals, 1785, Cambridge University Press edi-
tion, 2012, Cambridge, MA.
25. Personal accounts of overcoming heavy drinking often say the same. See Dennis Wholey, The Courage
to Change: Personal Conversation about Alcoholism, Houghton Mifflin Company, New York, 1984.
26. Louis Charland, “Decision-Making Capacity and Responsibility in Addiction,” in eds. Jeffrey Poland
and George Graham, Addiction and Responsibility, MIT Press, Cambridge, MA, 2011.
27. Herbert Fingarette, Heavy Drinking, Berkeley, CA, University of California Press, 1988.
28. Connie Mulligan et al., “Allelic Variation … ,” p. 329.
29. The Harm Reduction Coalition’s website is p://harmreduction.org/
30. Gabrielle Glaser, “Rehab Rooted in Science,” p. D4.
31. Stanton Peele, The Diseasing of America: Addiction Treatment out of Control, Lexington Books, Lex-
ington, MA, 1989.
32. Stanton Peele, “Herbert Fingarette: Radical Revisionist: Why Are People so Upset with This Retir-
ing Philosopher?” in Mary I. Bockover, ed., Rules, Rituals, and Responsibility: Essays Dedicated to
Herbert Fingarette, Open Court Press, La Salle, IL, 1991, pp. 37–53.
33. Dr. DeLuca’s professional website is http://www tordeluca.com/.
34. See the “For Smokers Only” website at http://www.smokersonly.org/
35. Katherine Seelye, “Heroin Yields Ground to Fentanyl, Its More Potent Killer Cousin,” New York
Times, March 26, 2016, p. A1.
36. Abigail Zuger, “A Trouble Bond between Hospital and Addicts,” New York Times, February 8, 2016.
pen07945_ch19_405-422.indd 421 9/8/16 9:52 AM
http://www.jsad.com/page/instructions/binge
http://kidney.niddk.nih.gov/kudiseases/pubs/hemodialysis/
http://www.aa.org/
http://www tordeluca.com/
http://www.smokersonly.org/
pen07945_ch19_405-422.indd 422 9/8/16 9:52 AM
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I-1
Name Index
Abernethy, Virginia, 308
Acer, David, 351
Adkins, Janet, 33, 34
Admiraal, Pieter, 48
Alexander, Leo, 30–31, 49
Alexander, Shana, 245
Aller, Gloria, 313
Aller, Greg, 313
Aller, Robert, 313
Allwood, Mandy, 118
Altman, Lawrence K., 233,
362, 408
Alzado, Lyle, 395
Angell, Marcia, 209
Annan, Kofi, 353, 354
Annas, George, 20–21, 22,
248, 273
Antinori, Severino, 135
Appelbaum, Paul, 318, 319
Aquinas, Thomas, Saint, 14,
28–29, 89, 140
Aristotle, 159
Armstrong, Lance, 396
Asch, Ricardo, 115
Augustine, 28
Aurelius, Marcus, 27–28
Ayala, Anissa, 255
Ayala, Marissa, 255
Badham, Paul, 88
Baer, Ted D., 228
Bailey, Leonard, 264–268, 270–277
Baker, John, 160
Barnard, Christiaan, 50, 76, 221,
222, 223–225, 231, 233, 237,
265, 266, 268
Barnes, Donald, 182
Bartlett, Roscoe, 192
Battin, Margaret Pabst, 51
Battiste, Christopher, 307
Beatty, Warren, 292
Beaumont, William, 196
Benedek, Thomas, 206
Benjamin, Martin, 249
Benning, Annett, 292
Benoit, Chris, 395
Bergalis, Kimberly, 351–352
Bernard, Claude, 202
Bernat, James, 73
Bertrand, Marcheline, 325
Blaiberg, Philip, 224
Blanshard, Terry, 105
Bleuler, Manfred, 315
Boeck, Caesar, 201
Bono, Chaz, 292
Bopp, James, 49
Boswell, John, 352
Bourgois, Philippe, 358
Bousada, Maria Carmen
del, 119
Bouvia, Elizabeth, 19–24, 39
Bove, Joseph, 350
Brandt, Karl, 31
Brinkley, Christie, 113
Britton, John, 100
Brodie, John, 139
Broelsch, Christoph, 255
Brown, John, 111
Brown, Joyce, 299–303,
308–309
Brown, Louise, 110–115
Brown, William J., 204–205
Brownback, Sam, 136
Bruning, Fred, 167
Bruusgaard, J. E., 201, 203,
207, 208
Buchanan, Patrick, 349
Buck, Carrie, 328
Bull, Patricia White, 70–71
Bunker, Chang, 290
Bunker, Eng, 290
Burcham, Jack, 229
Bush, George W., 65, 121,
135–136, 354, 361, 370
Bush, Jeb, 65, 66, 67, 78
Buxtun, Peter, 204, 205
Buyukmichi, Nedim, 181
Buzzanca, Jaycee, 116
Callahan, Dan, 121
Cameron, David, 377–378
Campbell, A., 158
Campo, Laura, 268
Canal, Danny, 253
Caplan, Arthur, 215
Capron, Alexander, 273,
275, 279
Carder, Angela, 102
Carlo, Wally, 175
Carr, Elizabeth, 112, 132
Carson, Ben, 269–270, 274
Casey, Robert, 251
Cates, Judy, 118
Ceausescu, Nicolae, 99, 216
Charlton, Eda, 199
Charo, Alto, 36, 318
Chase, Cheryl, 289, 291
Chodoff, Paul, 309–310
Christerson, Tom, 236
Chukwu, Nkem, 118
Clark, Barney, 225, 226–229, 235
Clinton, Bill, 205
Clinton, Hillary, 212
Cohen, Carl, 189, 249
Colao, Joseph, 400
Colby, William, 66
Collins, Francis, 192
Compton, Carolyn, 189
Constantine, 159
Coolidge, Calvin, 329
Cornelson, Ronald, 100
Cournand, Andre, 225
Cranford, Ronald, 63, 65–66, 75
Craze, Lizzie, 236
Crowfeather, Ernie, 249, 253,
405–420
Cruzan, Nancy, 57, 61–64, 67, 73,
74–78
Curren, William, 91
pen07945_nidx_I-1_I-4.indd 1 9/13/16 9:41 AM
I-2 Name Index
Dalai Lama, 183
Darvall, Denise Ann, 222, 234
Darvall, Edward, 69, 222, 234
Darwin, Charles, 328
Davis, Emma, 114
Davis, Geena, 113
Davis, Junior, 133
Davis, Mary Sue, 133
Dean, Howard, 375
Dear, Robert, 105
Deering, Warren, 23
Delahunty, James, 172
DeLuca, Alexander, 417, 418
Descartes, René, 69, 184–185
DeSillers, Ronnie, 252–253
Devauchelle, Bernard, 231
DeVries, William, 226–229,
233, 235
Diamond, Milton, 292–293
Dickinson, Robert Latou, 113
Dinoire, Isabelle, 230–232,
233–234, 235, 238
Dion, Celine, 113
Dixon, Greg, 349
Dockery, Gary, 69
Doerflinger, Richard, 137
Donaldson, Kenneth, 305
Donne, John, 28
Dreger, Alice, 269, 274, 291
Dubernard, Jean-Michel, 229–231,
234, 235
Duff, R., 158
Duff-Fraker, Leilani, 174
Easterly, William, 360
Edelin, Kenneth, 84–88
Edmond, Jean, 256
Edwards, Robert, 111, 120, 132
Eisen, Howard, 255
Elbe, Lili, 288
Elizabeth II, 111
Elliott, Carl, 396
Engelhardt, H. Tristram, Jr., 170
Epstein, Richard, 388
Erlich, Paul, 201
Everett, Emmett, 36
Falwell, Jerry, 349
Farmer, Paul, 357–358
Felos, George, 67
Fine, Russ, 25, 26, 45
Fingarette, Herbert, 250, 416–417
Fink, Sheri, 35, 36, 37
Finkbine, Sherri, 90–91
Fins, Joseph, 70, 71, 72, 216
Fisher, Daniel, 314
Fisher, Donald, 20
Fiske, Charles, 253
Fiske, Jamie, 253
Flanagan, Newman, 86, 87, 88, 95
Fleming, Alexander, 208
Fletcher, John, 167
Fletcher, Joseph, 120–121
Fontaine, Nicholas, 185
Ford, Henry, 328
Forssmann, Werner, 234
Foucault, Michel, 349
Fox, Michael J., 137
Fox, Michael W., 182
Fox, Nathan, 216
Fox, Renée, 239, 248, 259, 410, 411
Frederick the Great of Prussia, 352
Friedman, Benjamin, 207–208
Friend, Claudia, 312
Friend, Greg, 312–313
Friend, Joe, 312
Frist, Bill, 67
Frustaci, Patti, 117
Frustaci, Sam, 117
Galton, Francis, 328
Gandhi, Mahatma, 34
Gearhart, John, 134
Gelsinger, Jesse, 196, 215
Gennarelli, Thomas, 179–181, 188
Gianelli, Paul, 165
Giffords, Gabby, 312
Gilgunn, Caroline, 75
Gill, Carol, 40–41
Gilligan, Carol, 12
Gillman, Charlotte Perkins, 30
Giminez, Enrique, 85, 86
Ginsburg, Ruth, 105
Girsh, Faye, 45
Giuliani, Rudolph, 311
Glazer, Shep, 246
Glick, Seymour, 51
Gomperts, Rebecca, 105
Gonzalez, Juan, 307
Goodall, Jane, 192
Goodman, Ellen, 210, 310
Gosnell, Kermit, 105
Gosselin, Jon, 109–110
Gosselin, Kate, 109–110
Gould, Robert, 309
Grawitz, Ernst, 197
Gray, Fred, 205
Greek, Ray, 191
Greer, George, 65, 66, 67
Groveman, Sherri, 289
Gunn, David, 100
Gustafson, James, 158, 166–167
Hadler, Nortin, 409
Hadrian, 352
Hahn, Beatrice, 347
Haldane, J. B. S., 329
Hallam, Clint, 229–230
Hamilton, Joseph, 199
Hamilton, Pamela, 167
Hammesfahr, William, 66
Hansen, Lawrence, 192
Hardin, Garrett, 257
Harding, Courtenay, 315
Hardy, James, 264, 273
Hare, R. M., 3
Hartke, Vance, 246
Hata, S., 201
Hatch, Orrin, 137
Haydon, Murray, 228
Hayes, Catherine, 335
Hearst, William, 328
Heckler, Margaret, 350
Heller, Jean, 205
Hensel, Abigail, 290
Hensel, Brittany, 290
Hentoff, Nat, 43, 50
Herrick, Ronald, 255
Hill, Paul, 100
Hippocrates, 38
Hirschfeld, Magnus, 288
Hogue, Larry, 307
Holc, Alice, 267
Holc, Gordon, 267
Holmes, Oliver
Wendell, 328–329
Holtrop, Hugh, 85–86
Homans, William, 95
Homans, William Perkins, Jr., 86
Hoppe, Arthur, 20
Houben, Rom, 72
Howe, Gordie, 139
Hughes, Marl, 133
Hume, David, 28–29, 186
Humphrey, Derek, 21–22, 32,
42, 48
Hunter, Holly, 113
Hurewitz, Mike, 256
Hutzler, Alice, 36
Huxley, Aldous, 2, 112
Hwang Woo-suk, 136–137
Iliescu, Adriana, 119
Ilych, Ivan, 409
Jacobson, Cecil, 115
Jarvik, Robert, 226, 229, 243
Javed, Arshad, 59, 60, 77
Jaynes, Julian, 303
Jefferson, Mildred, 85
Jenner, Caitlyn, 292
Jobs, Steve, 250, 251
Johnson, Edward, 25
Johnson, Frank, 305
Johnson, Harriet McBryde, 75
Johnson, Lyndon, 161, 370
Jolie, Angelina, 113, 325–326, 332,
334, 338, 339
Jonsen, Albert, 91, 253
Jorgensen, George, 288
Kagan, Shelly, 188
Kamisar, Yale, 49
Kamm, Frances, 97, 174–175
Kampmeier, R. H., 206–207, 208
Kamrava, Michael, 109
pen07945_nidx_I-1_I-4.indd 2 9/13/16 9:41 AM
Name Index I-3
Kant, Immanuel, 11–12, 29,
208–209, 248, 249–250,
413–416, 418, 419
Kantrowitz, Adrian, 232, 268
Kasper, Anna, 232
Kass, Leon, 121, 143, 153
Katz, Jay, 316
Keh, Arceli, 119
Kelley, Crystal, 116–117
Kennedy, Anthony, 353
Kennedy, James, 67
Kennedy, John, 306
Keri-Lynn, 164–165
Kerr, Kathleen, 162–163, 164
Keuskamp, Arjen, 162
Kevorkian, Jack, 33–34
King, Marie-Claire, 325
King, Martin Luther, Jr., 34
Kipnis, Kenneth, 293–294
Kirklin, John, 225
Klein, Nancy, 102
Koch, Ed, 299, 300, 301–302,
308–309
Kolff, Willem, 225–226, 229,
243–244, 246
Koop, C. Everett, 161, 164,
165–166
Koop, James, 100
Korein, Julius, 59
Kornberg, Warren, 112
Kramer, Larry, 349, 353
Kramer, Peter, 392, 396
Krauthammer, Charles, 275
Kübler-Ross, Elisabeth, 32
Lahti, Adrienne, 318
Lakeberg, Amy, 269
Lakeberg, Angela, 269
Lamadrid, Tony, 313
Lamm, Richard, 257, 386
Latimer, Robert, 45
Laughlin, Harry, 328
Laureys, Steven, 72
Levy, Robert, 309
Lewis, C. S., 185–186
Lieberson, Jonathan, 349–350
Lifton, Robert Jay, 31
Linares, Dan, 173
Linares, Rudy, 173
Lippman, Robert, 300, 301,
302, 309
Ljungqvist, Arne, 400
Loftin, Max, 252
Lollobrigida, Gina, 224
Longmore, Paul, 22, 43, 44
Lopez, Maria, 329–330
Lorber, John, 158–159, 170, 174
Loren, Sophia, 224
Lower, Richard, 221, 247
Lucas, James, 203
Lynn, Joanne, 51, 63
Lyons, Emily, 100
Madsen, William, 418
Mahoney, Patrick, 67
Mantle, Mickey, 251
Marquis, Don, 94–95
Martinez, Mel, 78
Marx, Karl, 16
Mayfield, William, 66
Maynard, Brittany, 26–27
Mbeki, Thabo, 357
McAfee, Larry, 24–26, 39
McArdle, Charles, 189
McArdle, John, 182
McCanus, Wilda, 36
McCaughey, Bobbi, 118
McCaughey, Kenny, 118
McCormick, Richard, 140, 141,
143, 169, 273, 280
McCullough, Larry, 289
McFarlane, Robert, 40
McGee, Glenn, 140
McGuire, James, 86, 87
McIntyre, Abigayle, 313
McKiever, Kevin, 307
McMath, Jahi, 70
McRae, Donald, 224
Meese, Edwin, 164
Mengele, Josef, 197–198
Merk, Karl, 230
Mill, John Stuart, 16–18,
29–30
Millar, J. D., 205
Montagnier, Luc, 348
Montaigne, Michel de, 28
Moore, Francis, 225
Moriarty, Estella, 268, 269, 279
Morra, Eddie, 398
Morse, Robert, 59, 60, 67
Moss, Alvin, 249
Mueller, Pamela, 159–160
Mueller, Robert, 159–160
Mullen, Nancy, 40–41
Muller, Hermann J., 329
Murnaghan, Sarah, 253
Murray, Joseph, 255
Museveni, Yoweri, 355
Najarian, John, 276
Napoleon, 159
Nash, John, 314
Navratilova, Martina, 288
Nehlsen-Cannarella, Sandra,
265, 276
Nelson, Charles, 216
New, Maria, 289
Newkirk, Ingrid, 183
Newman, George, 162,
165–166
Nixon, Richard, 369
Nolen, William, 87
Noonan, John, 94–95
Norwood, William, 271–272
Nozick, Robert, 15
Obama, Barack, 371, 372, 376,
378, 383, 387, 388
O’Connor, J. B., 305
O’Connor, Sandra Day, 103
Olivieri, Nancy, 212
Orlans, Barbara, 184
O’Rourke, Kevin, 41, 74
Outka, Gene, 143
Owen, Adrian, 72
Owens, Walter, 160
Ozar, David, 142
Pacheco, Alex, 181–182
Palin, Sarah, 168
Pappworth, Henry, 199
Pariente, Barbara, 66
Paris, John, 74
Patel, Nayna, 127
Paul II, John, 91, 140
Paul VI, 91
Pearson, Justin, 268
Peck, Gregory, 224
Pelosi, Nancy, 137
Perry, Rick, 139
Perutz, Max, 121
Phoenix, River, 57
Picoult, Jodi, 255
Pinel, Philippe, 303
Pistorius, Oscar, 392
Pitt, Brad, 325
Pius IX, 89, 140
Pius XII, 76
Pizzo, Philip, 239
Plato, 27, 159
Plum, Fred, 59
Pointer, Sam C., Jr., 399
Pojman, Louis, 3
Pons, Timothy, 182
Pou, Anna, 34–37, 48–49
Preston, Thomas, 228
Proxmire, William, 205
Putnam, Rosemarie, 91
Quill, Timothy, 51
Quinlan, Joseph, 61
Quinlan, Julia, 58, 61
Quinlan, Karen, 57–60, 247
Quinn, James, 236
Quinn, Warren, 94–95
Rachels, James, 47
Ramsey, Paul, 85, 120, 273
Randall, Tony, 119
Rascher, Sigmund, 197
Raskind, Richard, 288
Rawls, John, 15–16, 153, 381–382,
400–401
Reagan, Ronald, 161
Reemtsma, Keith, 264–265, 273, 275
Regan, Tom, 171, 188–189, 270
Reich, Warren, 91
Reimer, David, 284–288
pen07945_nidx_I-1_I-4.indd 3 9/13/16 9:41 AM
I-4 Name Index
Reimer, Janet, 284
Reimer, Ron, 284
Reinertsen, Sara, 392
Rescher, Nicholas, 250
Reverby, Susan, 211
Rhoads, Cornelius, 198
Richards, Renée, 288
Richey, Charles, 183
Richter, Rudolf, 288
Rifkin, Jeremy, 121, 122
Rios, Elsa, 132–133
Rios, Mario, 132–133
Rivers, Eunice, 203, 204
Roberts, John, 387
Robertson, Pat, 349
Robinson, William, 328
Roche, Ellen, 210
Rodríguez, Nilda, 255
Rogers, Judy, 252
Roosevelt, Franklin, 198
Roosevelt, Theodore, 328
Rorty, Richard, 18
Rosenhan, D., 304
Rothman, David, 198–199
Rudolph, Eric, 100
Russell, Frederick, 28
Salem, Rifaat, 114
Sanchez, Thomas, 97
Sanders, Bernie, 375
Sanderson, Robert, 100
Santorum, Rick, 168
Sartre, Jean-Paul, 28
Saunders, Cicely, 48
Savulescu, Julian, 395–396
Scantlin, Sarah, 71
Schiavo, Michael, 64, 65, 67, 74, 78
Schiavo, Terri, 57, 63, 64–69,
72–78
Schindler, Mary, 64
Schindler, Robert, 64
Schouten, Fred, 267
Schouten, Karen, 267
Schwartz, Rosalyn, 367–376
Scott, Kenneth, 199
Scott, Matthew, 230
Scott, Richard, 20, 24
Scribner, Belding, 225, 244, 245,
247, 253, 407, 410
Seed, Dick, 135
Seligman, Martin, 182
Semenya, Caster, 288
Sepkowitz, Kent, 358
Sewell, Barbara, 255
Sewell, James, 255
Seymour, Jane, 113
Shamoo, Adil, 315
Shanks, Niall, 191
Sharapova, Maria, 397
Shewmon, Alan, 71
Shkreli, Martin, 388
Shumway, Norman, 221, 222, 232,
236, 239
Siegel, Norman, 308
Siegler, Mark, 249
Siemionow, Maria, 230, 231–232
Sims, J. Marion, 113
Singer, Peter, 8, 9, 45, 93, 170,
186–188, 192
Slepian, Barnett, 100
Smith, Alyssa, 255
Smith, Karen, 253
Smith, Roy, 330–331
Smith, Teri, 255
Snow, John, 347
Sobell, Linda, 418
Sobell, Mark, 418
Socrates, 27, 38, 352
Sorkow, Harvey, 116
Sparrow, Robert, 401
Spinoza, Baruch, 28
Stahl, Lesley, 165–166
Starnes, Vaughn, 256
Starzl, Thomas, 234, 257,
264–265, 271, 276, 386
Staub, Norman, 225
St. Aubert, Maryline, 231
Steinbeck, John, 207
Steinbock, Bonnie, 47, 142
Stell, Lance, 70
Steptoe, Patrick, 111, 132
Stern, Bill, 116
Stern, Elizabeth, 116
Stevens, Paul, 160
St. Martin, 196
Suleman, Nadya, 110, 122
Sunderland, Trey, 319
Swazey, Judith, 239, 245, 248,
410, 411
Szasz, Thomas, 304, 409
Talbot, Margaret, 292
Talbot, Simon, 230
Tamminga, Carol, 318
Tanenbaum, Melvyn, 162
Tarasoff, Tatiana, 307
Tarrant, Barbara, 256
Taub, Edward, 181–183
Terasaki, Paul, 271, 276
Terry, Randall, 67, 100
Theroux, Paul, 360
Thiele, John, 36, 37
Thogmartin, Jon, 68
Thompson, Jacqueline, 118
Thomson, Jarvis, 141
Thomson, Judith Jarvis, 96–97
Thurmond, Strom, 119
Tiefel, Hans, 122
Tiller, George, 100
Tong, Paul, 91
Tong, Rosemarie, 91
Tooley, Michael, 170
Tools, Robert, 236
Trepanier, Angela, 340
Trutt, Stephanie, 181
Tuchman, Barbara, 346–347
Tucker, Bruce, 114, 247
Udobi, Iyke Louis, 118
van Zyl, Dirk, 236
Vidal, Gore, 352
Volkow, Nora, 411
Vonderlehr, Raymond, 202–203
Vos Savant, Marilyn, 229
Vukov, Judith, 313
Waddill, William, 100
Wade, Henry, 91
Waithe, Mary Ellen, 259
Wallace, George, 67
Wallis, Terry, 70
Walsh, Alexis, 307
Wanglie, Helga, 75
Warren, Mary Anne, 92–93
Warren, Petra, 159
Washburn, Lawrence, 162
Washkansky, Louis, 221–224,
234, 237
Watson, James, 121
Wayne, John, 226
Webdale, Kendra, 307
Weber, William, 162
Webster, William, 74
Weisbard, Alan, 259
Weldon, Dave, 67
Weller, Barbara, 67
Wexler, Alice, 326–327
Wexler, Leonard, 164
Wexler, Nancy, 326–327, 333, 334,
336, 337
White, Ryan, 350
Whitehead, Mary Beth, 116
Whitehurst, Todd, 124
Whitner, Comelia, 102
Wilkes, J. C., 31
Willenbring, Mark, 412
Williams, Nushawn, 353
Williams, Tennessee, 352
Wilmut, Ian, 139
Wilson, E. O., 6
Wilson, Eric, 396
Wilson, James, 215
Wood, Carl, 113, 118
Wood, Walter, 256, 257
Yamanaka, Shinya, 138
Zachary, R. B., 170–171
Zavos, Panayiotis, 135
Zeanah, Charles H., 216
Zimbardo, Philip, 408–409
Zuger, Abigail, 420
pen07945_nidx_I-1_I-4.indd 4 9/13/16 9:41 AM
I-5
Subject Index
Abnormal harm, 123, 172
Abortion, 84–105
clinics, states restriction on,
104–105
culture of death and, 98–99
doctrine of double effect and,
14, 89
Edelin case, 84–88
feminist views of, 97
fetal tissue research and, 101
Finkbine case, 90–91
and gender selection, 99
genetic defects and, 97–98
illegal, experience of, 90
vs. infanticide, 168
language of, 88
limited pro-choice view of,
96–97
live birth, 100–101
maternal vs. fetal rights,
102–103
partial birth, 104
personhood/potentiality and,
92–95
protests and violence against, 100
religious views on, 85, 88–90, 98
Roe v. Wade decision, 60,
90–91, 103–104
self-administered, by
telemedicine, 105
statistics on, 92
as three-sided issue, 99
viability and, 86, 95–96, 103
Absolute risk, 122, 330
Addiction, alcoholism and, 411–412
Ad hominem (“to the man”), 5
Adoption, payment for, 115–116
Ad populum, 7
Adult stem cells, 135
Advanced Cell Technology (ACT),
134–135
Advance directives, 77–78
Affordable Care Act (ACA), 376–389
arguments against, 377–389
bureaucracy, 379
costs under, 385–387
efficiency, 378
illegal immigrants and, 377–378
intergenerational justice
under, 387
rationality and, 380
Against Happiness: In Praise of
Melancholy (Wilson), 396
AIDS. See HIV/AIDS
Alcoholism, 405–419
and addiction, 411–412
Crowfeather case, 405–419
as disease, 409–410
geneticists on, 412–413
harm reduction vs. moralism,
417–418
Kantian ethics and, 413–414
neuroscience on, 411–412
sociologists on, 410–411
Alcohol-related end-stage liver
disease (ARESLD), 249
Alcohol use, 2, 57, 249
Allocation of resources, 243–261
Alzheimer’s disease, 33, 330–331
American Medical Association
(AMA), 59, 77
Americans with Disabilities Act
(ADA), 44, 75, 173
Amplification system, 348–349,
358
Anencephaly, 266–269, 278–279
Animal cloning, 78, 133–134, 136
Animal Liberation (Singer),
186–187, 188
Animal Liberation Front (ALF),
179–181
Animal research, 179–192
Cartesianism and, 185
law and, 183
need for, 189–190
numbers and kinds of, 184
official view of, 189–192
pain of animals in, 184–186
philosophy of mind and, 186
speciesism and, 186–188
value of animal life and,
188–189
Animal-to-human transplants,
264–266, 269–277
Annie Hall (movie), 44
Antidepressants, enhancement
with, 392, 396
Apotex Inc., 212
Appeals to feelings and
upbringing, 7
Argument, 1–2
on killing, 45–46
from marginal cases, 96
Argument from marginal
cases, 96
Artificial feeding, 76–77. See also
Feeding tubes
Artificial heart, 225–229
Artificial insemination, 113
Artificial kidneys, 243–248.
See also Kidney dialysis
As Nature Made Him: The Boy
Who Was Raised as a Girl
(Colapinto), 287
Assisted reproduction, 109–128
commercialization of, 124–125
confidentiality in, 124
developments in, 112–115
and embryonic research, 132
first IVF baby in U.S., 132
first test-tube baby,
110–111, 132
gender selection in, 119
genetic disease, screening
for, 125
harm in, 117–118, 121–124
media coverage on, 112
multiple births in, 109–110,
117–118
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I-6 Subject Index
Assisted reproduction (Continued)
older parents in, 118–119
payment for, 115–116
regulation of fertility clinics,
127–128
religious views on, 119–121
worldwide, 126–127
Assisted suicide, 39. See also
Physician-assisted dying
Attention deficit/hyperactivity
disorder (ADHD), 393
Autonomy, 12, 16–17
involuntary psychiatric
commitment and, 308
and requests to die, 41–42
Baboons, 264–266
medical research on, 179–181
organs from, 269–277
Baby Doe rules, 157, 161
Baby Fae case, 264–266, 269–277
Baby Gabriel case, 264,
266–268, 280
Baby(ies). See also Impaired babies
costs and opportunity costs
of, 280
defined, 88
designer, 126
informed consent for
procedures on, 273–274
as organ donors, 264, 266–269,
277–280
as research subjects, 272–273,
275–277
The Baby in the Bottle (Nolen), 87
Baby Jane Doe case, 157, 162–166
Baby M case, 116–117
Baby Theresa case, 264, 268–269
Bad Blood (Jones), 206
Baseline harm, 123, 172
Bayh–Dole Act, 212
A Beautiful Mind (movie), 314
Begging the question, 8
Beneficence, 17
Best interests of patients, 63
Better than Well (Elliott), 396
Bias, media ethics and, 165–166
Bible
and abortion, 88–90
and suicide, 28
Binge drinking, 405–406
Bioethics
birth of, 247
four principles of, 16–18
global, 354
good reasoning in, 1–4
mistakes in reasoning, 4–8
and politics, 78–79
Biogenetic child, 113–114
Biological inequality, 149
Biological sex, 285, 290
Birthright citizenship, 377
Birth(s). See also Assisted
reproduction; Impaired
babies
multiple, 109–110, 117–118
wrongful, 123, 171–172
Black Death, 346
Blue Cross/Blue Shield, 373–374
Body shaping, 393–394
Bowen v. American Hospital
Association et al., 164
Bowers v. Hardwick, 352
Brain death
in anencephalic babies,
268–269, 279–280
in organ donors, 234–235
standards for, 58, 69–70
Brave New World (Huxley), 2, 112
Breast, enhancements of, 399
Breast cancer genes, 325–326
Bubonic plague, 346
Bucharest Early Intervention
Project (BEIP), 216
Buck v. Bell, 328–329
Canadian health-care system,
368–369
Cancer, genetic testing in, 325–326
Cardinal virtues, 13
Care, Ethics of, 12–13
Cartesianism, 185
Catholic Church
on abortion, 85
on comatose patients, 74
on embryos, 140
on suicide, 41
Cheating, medical enhancement
and, 396–398
Cherry-picking, 374
Child abuse, 172–173
Child Abuse Amendments
(CAA), 173
Children’s Health Insurance
Program (CHIP), 371
Chimpanzees
medical research on, 192
organs from, 264–265, 273–274
Cholera, 347, 362
Christian Defense Coalition, 67
Civility, 4
Clear and convincing
evidence, 62
Clinical Antipsychotic Trials of
Intervention Effectiveness
(CATIE), 320–321
Cloning
animal, 78, 133–134, 136
background on, 132–140
embryonic and reproductive,
links between, 153–154
fraudulent claims on research,
135, 136–137
legal restrictions on, 136
primate, problems with. See
Primate cloning, problems
with
Rawlsian argument for, 153
reproductive, 144–147
sheep (Dolly), 78, 133–134,
136, 139
COBRA, 372
Cognitive criterion
of brain death, 69
of personhood, 92–93, 170
Coma
anoxic, 71
best interest of patients, 63
compassion for patients in,
73–74
Cruzan case, 57, 61–64, 74
defined, 58
disability issues in, 75
extraordinary vs. ordinary
treatment in, 76
futile vs. non-futile care in,
75–76
Quinlan case, 57–62, 74, 77
regaining consciousness from,
70–72
Schiavo case, 57, 64–69, 72–73,
74, 78–79
substituted judgment for
patients, 61, 63
withdrawing vs. forgoing
treatment, 77–78
Commercialization, of assisted
reproduction, 124–125
Committee on Medical
Research, 198
Common Rule, 212
Community rating, 373
Compassion, for comatose
patients, 73
Compassion and Choices
(Hemlock Society), 21–22
Competence. See also Incompetent
patients
involuntary psychiatric
commitment and, 308
Complete androgen insensitivity
syndrome (CAIS), 294
Conceptual slippery slopes, 49
Congenital adrenal hyperplasia
(CAH), 288–289, 293, 294
Conjoined twins, 159–160,
264, 290
separating, 269–270
Consciousness. See also Persistent
vegetative state (PVS)
chances of regaining from coma
and PVS, 70–72
as gradient, 71
minimally conscious state,
68, 70
sentience vs., 186
pen07945_sidx_I-5_I-12.indd 6 9/13/16 9:42 AM
Subject Index I-7
Consequentialism, 9
Consistency, 2
Consolidated Omnibus
Budget Reconciliation Act
(COBRA), 372
The Constant Gardener (movie), 214
Constraint-Induced Movement
Therapy, 182–183
Contraception, emergency,
101–102
Cost-plus reimbursement, 246
Cost shifting, 373
Council for International
Organizations of Medical
Sciences (CIOMS), 215
Counseling, genetic, 338
The Courage to Fail (Fox and
Swazey), 410
CRISPR, 342
Culture of death, 98–99
Cycling, doping in, 393
Cyclosporine, 235, 238–239
Death. See also Physician-assisted
dying; Requests to die;
Suicide
of anencephalic babies,
268–269, 279–280
criteria of, 57–58, 69
culture of, 98–99
of organ donors, 234–235
Death with Dignity Act
(Oregon), 37
Deception
informed consent and,
205–206
of research subjects, 203–204
Declaration of Helsinki, 319
Defense of Marriage Act
(DOMA), 352
Dehydrogenase, 412
Deinstitutionalization, 306
Depression, and request to die, 42
Deprivation argument, and
abortion, 94–95
Designer babies, 126
Dexamethasone, prenatal use
of, 289
Diabetes, genetic testing in,
329–330
Diabetes Prevention Program
(DPP), 341
Diagnostically related group
(DRG), 246
Dialysis. See Kidney dialysis
Dickey-Warner Amendment, 133
Difference principle, 382
Dignity, Kantian ethics and,
413–414
Disabilities, persons with. See also
Impaired babies
comatose patients as, 75
and medical enhancements,
400–402
prejudice and discrimination
against, 43–45
requests to die, 19–51
Discovery Health Channel, 110
Distributive justice, 18
and allocation of medical
resources, 243–261
Doctrine of double effect, 14, 89
Dolly (cloned sheep), 78, 133–134,
136, 139
Donation-after-cardiac-death
(DCD), 257–260
Donor Sibling Registry, 124
Doping, 393
Down syndrome, 157, 160,
168–172
Draize tests, 184
Duodenal atresia, 157
Durable power of attorney, 78
Duty, in Kantian ethics, 11
Ebola virus, 362
Egalitarianism, 18
Egg donors, payment for, 115
Egg transfer, 113–114
“Either-Or” fallacy, 7
The Elephant Man (movie), 44
Embryos, 342. See also Abortion;
Assisted reproduction
Bush (George W.) policy on,
135–136
Davis case, 133
fraudulent claims on research,
135, 136–137
frozen, 114
genetic screening of, 125
historical perspective on
research, 132–140
indeterminancy of, 143
induced pluripotent stem cells
vs., 138
interest view of, 142
legal restrictions on use, 136
Obama policy on, 137
opportunity cost of missed
research on, 143–144
personhood/potentiality and,
140–141
religious views of, 140
research, 133
and respect, 142–143
Rios case, 132–133
slippery slope and, 141
spare, 133
Emergency contraception, 101–102
Emergency Medical Treatment
and Active Labor Act
(EMTALA), 372
Empirical slippery slopes, 48–49
End-stage liver disease (ESLD), 249
End Stage Renal Disease Act
(ESRDA), 246–247, 370
Enhancement. See Medical
enhancement
Ensoulment, 89
Enthymeme, 2
Environmental inequality, 149
Epidemics, 346–347. See also HIV/
AIDS
Equivocation, 7–8
Erythropoietin (EPO), 393
Ethical reasoning
Ethics of Care, 12–13
good reasons in, 1–4
Kantian ethics, 11–12
mistakes in, 4–8
natural law, 13–14
Thomistic, 13–15
virtue ethics, 13
Ethical theories, 8–14
moral relativism, 8–9
utilitarianism, 9–11
Ethics Advisory Board, 132
Ethics of Care, 12–13
Eugenics, 125, 328–329
Euthanasia, 30–32, 170. See also
Physician-assisted dying
active vs. passive, 47
Evidence, 1, 62
Experience rating, 373–374
Exposure effect, 400
Extraordinary vs. ordinary
treatment, 76
Face transplant, 229–232, 237
Fair Benefits Model, 214
Fair-minded, 4
False dichotomy, 7
Family illness, 316
Farm and Animal Research
Facilities Protection Act,
1992, 183
Feeding tubes, 76–77
Cruzan case, 61–64
extraordinary vs. ordinary
treatment in, 76
futile vs. non-futile care in,
75–76
Quinlan case, 58
refusal of, 20–24
Schiavo case, 64–69
Feelings, appeals to, 7
Feminism
abortion views, 97
Ethics of Care, 12–13
HIV/AIDS views, 355–359
Fetal dex, 289
Fetal tissue research, 101
Fetus. See also Abortion
defined, 88
listing for heart transplants,
251–252
pen07945_sidx_I-5_I-12.indd 7 9/13/16 9:42 AM
I-8 Subject Index
Fetus (Continued)
personhood/potentiality and,
92–95
rights, maternal rights vs.,
102–103
viability of, 86, 103
Five Days at Memorial (Fink), 36
Food. See also Feeding tubes
refusal of, 20–24
Free will, 408–409
Kantian ethics and, 413–414
Frozen embryos, 114
Fusion, cloning, 134
Futile vs. non-futile care, 75–76
Gamete intrafallopian transfer
(GIFT), 113
Gamete material, freezing of,
114–115
GATTACA (movie), 337, 341
Gay-related immune deficiency
(GRID), 347–348
Gender identity, 285, 290
Gender presentation, 290
Gender reassignment
John/Joan case, 284–287
surgical, 293
Gender role, 285
Gender selection
and abortion, 99
in assisted reproduction, 119
Gene, 326
Gene therapy, death in, 215
Genetic criterion, of personhood,
94–95
Genetic defects, and abortion,
97–98
Genetic diseases, 326. See also
Genetic testing
Genetic identity, 145–146
Genetic Information
Nondiscrimination Act
(GINA), 338–339
Genetic testing, 325–342
for Alzheimer’s disease,
330–331
cancer, 325–326
counseling required with, 338
for diabetes, 329–330
disease prevention through,
331–332, 340–342
eugenics and, 328–329
family issues in, 334–335
financial interests in, 339–340
good news sought in, 333–334
Huntington’s disease, 326–327
and insurance, 338–339
personality responsibility for
disease in, 335–336
premature announcements and
oversimplifications, 339
prenatal, 125
self-interest in, 332–333
sick identity from, 336–337
suicide risk from results, 337
Genitalia, ambiguous. See Intersex
persons
Germ line gene therapy, 138
Gestations. See Births; Multiple
births
Global bioethics, 354
God Committee, 243–248,
260–261
Golden Rule, 73–74
Gradient view of personhood,
93–94, 169
Greece, ancient
death and suicide in, 27–28
and Hippocratic Oath, 38–39
infanticide in, 159
natural law in, 13
virtue ethics in, 13
Griswold v. Connecticut, 59–60, 61,
91, 150
Guardian ad litem, 160, 163
Guatemalan syphilis study,
211–212
HAART, 360–361
Hand transplant, 229–230
Harm
abnormal, 123, 172
assisted reproduction and,
117–118, 121–124
baseline, 123, 172
to human research subjects,
207–208
involuntary psychiatric
commitment and, 310–311
medical enhancement and,
398–399
paradox of, 122–123
total, 172
wrongful birth vs. wrongful
life, 123
wronging vs., 123–124
Harm principle, 17
Harm reduction approach,
417–418
Harm Reduction Coalition (HRC),
417–418
Harm Reduction Movement
(HRM), 200
Harrison Act of 1914, 30
Harvard criteria, of brain death,
69, 234
Health care, 367–389. See also
Affordable Care Act (ACA)
American system of, 369–373
Blue Cross/Blue Shield, 373–374
Canadian system of, 368–369
costs in, 385–387
genetic testing and, 338–339
intergenerational justice in, 387
preexisting conditions and, 367
private plans, 372–373
ratings, 373–374
as right, debate over, 381–385
United Kingdom system of, 369
universal medical coverage, 368
Health Insurance Portability
and Accountability Act
(HIPAA), 372
Health maintenance organizations
(HMOs), 369
Heart, artificial, 225–229
Heart transplant
fetuses listed for, 251–252
first, 221–224
LVADs as bridge to, 236
number and results of, 224–225
Heavy Drinking (Fingarette), 416
Hemlock Society, 21–22, 32, 42
Hemodialysis. See Kidney
dialysis
Heredity, and schizophrenia, 314
Hippocratic Oath, 34, 38–39
HIV/AIDS, 346–363
amplification system for,
348–349
Bergalis case, 351–352
educational prevention, 355,
359–361
exceptionalism in, 353
feminist perspective on,
355–359
historical perspective on,
346–350
and ideology, 348–350
placebo study in Africa,
209–210, 214
prevention of, 353–363
structuralism and, 357–358
testing for, 350–351
transmission of, 350–351
triage in, 357, 360
Holland, physician-assisted
dying in, 32–33
Homeless persons
deinstitutionalization and, 306
housing for, 311–312
involuntary psychiatric
commitment of, 299–303,
308–311
Homophobia, 352
Homosexuality, 352–353
Homozygous recessive, 326
Hospice movement, 32
HSET spindle proteins, 148
Humanae Vitae, 91
Human cloning. See Reproductive
cloning
Human dignity, Kantian ethics
and, 413–414
Human Embryo Research
Panel, 133
pen07945_sidx_I-5_I-12.indd 8 9/13/16 9:42 AM
Subject Index I-9
Human Genome Project, 326
Human research subjects, 196–216
babies as, 272–273, 275–277
collaborative model for, 214–215
Common Rule and, 212
deception of, 203–206
Fair Benefits Model, 214
financial conflicts and, 212–213
Guatemalan syphilis study on,
211–212
harm to, 207–208
HIV study in Africa on,
209–210, 214
international standards of
research ethics, 213–214
Kantian ethics on, 208–209
Krieger lead paint study on,
210–211
Nazi experimentation on,
196–197
Nuremberg Code on, 198
therapy vs. experimentation on,
275–277
Tuskegee Study on, 200–209
Huntington’s disease, 326–327
Hydration, artificial, 76–77.
See also Feeding tubes
Illegal immigrants, health-care
coverage for, 377–378
Immediate animation, 89
Immigrants, illegal, health-care
coverage for, 377–378
Immigration Restriction Act of
1924, 329
Immortalized human stem cell
lines, 134
Impaired babies, 157–175
abortion vs. infanticide, 168
ancient societies and, 159
assisted reproduction and,
117–118, 121–122
Baby Doe rules, 157, 161
Baby Doe squads, 161
Baby Jane Doe case, 157
conjoined twins, 159–160
degrees of defects, 170–171
disability advocates and, 174
Infant Doe case, 157, 160
Johns Hopkins cases, 157–158
killing vs. letting die, 169
legislation on, 172–173
media coverage on, 165–166
Mueller case (conjoined twins),
159–160
pediatric intensivists, 158–159
personal vs. public cases,
167–168
personhood of, 169–170
selfishness and, 166–167
wrongful birth vs. wrongful life,
171–172
Impartiality, 3
Improved Standards for
Laboratory Animals Act of
1985, 183
Incompetent patients. See also
Coma; Mentally ill persons
compassion for, 73–74
substituted judgment for, 61, 63
Indeterminancy, of embryos, 143
Induced pluripotent stem (IPS)
cells, 138
Inequality, reproductive cloning
and, 149–150
Infant Doe case, 157, 160
Infanticide, 159
abortion vs., 168
Infant(s). See Baby(ies); Impaired
babies
Informed consent, 273–274
for transplantation, 238–239
Informed consent, and deception,
205–206
Institutional Animal Care and Use
Committees (IACUCs),
181, 183
Institutional Review Boards
(IRBs), 205
Interest view, of embryos, 142
Intergenerational justice, 387
Intersex persons, 284–295
civil rights of, 292
conservative view of, 293
Dutch approach to (delaying
puberty), 294
John/Joan case, 284–287
Kipnis’ proposals on, 293–294
medical exceptions for
treating, 294
nature–nurture debate about,
285, 292–293
secrecy, in child’s best interest,
290–291
secrecy and shame, overcoming,
291–292
transgender vs., 288
Intracytoplasmic sperm injection
(ICSI), 113
In vitro fertilization (IVF),
110–111. See also Assisted
reproduction
Involuntary psychiatric
commitment, 299–312
autonomy and, 308
Brown case, 299–311
competence and, 308
deinstitutionalization vs., 306
harm vs. benefit in, 310–311
legal victories for patients,
305–306
O’Connor criteria for, 301,
305–306
paternalism and, 308
patients’ rights vs., 303–304
psychiatry and, 309–310
Wyatt decision on, 305
Irreversibility standard, of brain
death, 69–70
Jarvik-7 artificial heart, 226–229
Jaycee case (surrogacy), 116–117
Johns Hopkins cases, 157–158
Journal of the American Medical
Association, 201, 202
Judicious neglect, 59
Justice
in allocation of medical
resources, 243–261
as bioethical principle, 17–18
in health care, 382–385
Rawls on, 15–16, 153, 382–384
theories of, 15–17
Justification, 1
The Just War in the Middle Ages
(Russell), 28
Kant, Immanuel, 11–12
Kantian ethics, 11–12
and alcoholism, 413–414
and disease model, 414–416
and human research subjects,
208–209
and suicide, 29
utilitarianism vs., 9–10
Kendra’s Law, 307
Kidney dialysis. See also Artificial
kidneys
The End Stage Renal Disease
Act (ESRDA), 246–247
Rogosin/nocturnal, 260
Kidneys, artificial, 243–248
Killing
argument on, 45–46
vs. letting die, 46–47
Krieger lead paint study, 210–211
The Last Well Person (Hadler), 409
Latent syphilis, 200
Lawrence v. Texas, 352
LD-50 (lethal dosage) tests, 184
Lead paint study, 210–211
Left ventricular assist devices
(LVADs), 236
Leprosy, 347
Libertarianism, 15
Lifeboat Test, 189
Life support. See Ventilators
Limb transplant, 229–232
Live birth abortion, 100–101
Living organ donors, 2–3, 255–257
Living will, 78
Logic, 2
Malpractice, 59
Managed care, 246
pen07945_sidx_I-5_I-12.indd 9 9/13/16 9:42 AM
I-10 Subject Index
Mandated choice, for organ
donation, 247
Mandated multi-plan coverage, 368
Marginal cases, argument
from, 96
Marxism, 16
Massachusetts health-care plan,
375–376
Mass shootings, 312
Maximization, 9–11
Media coverage
assisted reproduction, 112
Baby Fae case, 274–275
conjoined twins, 269
organ transplantation, 224, 233
Schiavo case, 67
Tuskegee Study, 206–207
Medicaid, 370–371
Medical enhancement, 392–402
cheating and, 396–398
defined, 394
disability and, 400–402
ethical issues of, 394–402
exposure effect in, 400
harm in, 398–399
Pistorius’s case, 392
positional advantage, 394–395
role of physicians in, 400
Tess’s case, 392
Medically reasonable options, 163
Medicare, 370
Meningocele, 158
Mentally ill persons
deinstitutionalization of, 306
housing for, 311–312
ideology and insanity, 303
involuntary psychiatric
commitment of, 299–312
and mass shootings, 312
rights of, 303–304
violence of, 307–308
Methicillin-resistant Staphylococcus
aureus (MRSA), 362
Million Dollar Baby (movie), 44
Mind, philosophy of, 186
Minimally conscious state (MCS),
68, 70
Mitochondria, 134
swapping, 138–139
Mitotic spindles, 148
Monkeys, medical research on,
181–183
Moralism, 417–418
Moral relativism, 8–9
Moral status, 142
Moral value, 142
Multiple births, 109–110, 117–118
Multiple listings, for transplants,
250–252
Myelomeningocele, 158
Myriad Genetics, 339
My Sister’s Keeper (Picoult), 255
National Alliance on Mental
Illness (NAMI), 318
National Bioethics Advisory
Commission (NBAC), 135
National Health Service (NHS),
369
National Transplantation Act
(1984), 250
Nature vs. nurture, 285, 292–293
Nazi Germany, 8–9, 42–43, 196–
197, 328
and euthanasia, 30–32
Neonatal intensive care unit
(NICU), 157. See also
Impaired babies
Neurological criterion, of
personhood, 95
New England Journal of Medicine,
71, 85
Nocturnal dialysis, 260
Non-heart-beating cadaver donors
(NHBCD), 257–260
Nonmaleficence, 17
Non-therapeutic experiment, 318
Norm of reaction, 326
NuMA spindle proteins, 148
Nuremberg Code, 198, 315
Nutrition, artificial. See Feeding
tubes
Obama health-care plan. See
Affordable Care Act (ACA)
Obergefell v. Hodges, 352–353
O’Connor v. Donaldson, 301,
305–306
Oklahoma v. Skinner, 60, 91
One Flew over the Cuckoo’s Nest
(movie), 304
One-hit, two-hit model, 333
On Liberty (Mill), 16, 29–30
Ontario Protocol, 266–268, 279
Onus of proof, 3
Oosight, 148
Operation Desert Storm, 199–200
Operation Rescue, 100
Opportunistic infections, 350
Opt-out vs. opt-in policy, for
organ donation, 248
Oregon
health-care plan in, 375–376
physician-assisted dying in,
37–38
Organ
distribution of, 243–261
transplantation of. See
Transplantation
Organ-utilitarians, 252
Other-regarding acts, 30
Pain, animal, 184–186
Palliative care, 32
Paradox of harm, 122–123
Parens patria, 163
Parental age, in assisted
reproduction, 118–119
Partial birth abortions, 104
Paternalism, 17, 308, 337
Patient Protection and Affordable
Care Act (PPACA), 339,
367–389. See also Affordable
Care Act (ACA)
Patient rights movement, 303–304
Payment, in assisted reproduction,
115–116
PEOPLE (magazine), 110
People for the Ethical Treatment
of Animals (PETA), 179,
181–183, 270
Persistent vegetative state (PVS)
Cruzan case, 61–64
defined, 58
misdiagnosis of, 72
Quinlan case, 57–62
regaining consciousness from,
70–72
Schiavo case, 64–69
Personhood
and abortion, 92–95
cognitive criterion of, 92–93, 170
and embryo research, 140–141
genetic criterion of, 94–95
gradient view of, 93–94, 169
and impaired babies, 169–170
neurological criterion of, 95
Physician-assisted dying
cries for help and, 51
Hippocratic Oath and, 34,
38–39
Holland and, 32–33
Kevorkian and, 33–34
legalization in U.S., 37–38
mistakes and abuses in, 50–51
Pou and (Hurricane Katrina),
34–37
relief of suffering in, 47–48
role of physicians in, 50
slippery slope argument on,
48–50
Pittsburgh protocol, for organ
donation, 258–259
Pneumonic plague, 346
Positional advantage, 394–395
Post hoc, ergo propter hoc (“After
This, Therefore, Because of
This”), 6
Potentiality, 94–95
Preexisting condition, 367
Prepaid group medical coverage, 374
Preponderance of evidence, 62
Presumed consent, 248
Primary syphilis, 200
Primate cloning, problems with,
147–154
spindle problem, 148–149
pen07945_sidx_I-5_I-12.indd 10 9/13/16 9:42 AM
Subject Index I-11
Principle, 2
Principle of totality, 14
Privacy, right to
abortion decisions, 60, 91–92
Griswold decision, 59–60, 61
Quinlan case, 59–60
Pro-choice view, limited, 96–97
Proof, onus of, 3
Prozac, 392
Psychiatric commitment. See
Involuntary psychiatric
commitment
Psychological trauma, 122
Puberty, delaying, for intersex
persons, 294
Quality of life, post-transplant,
235–236
Question-begging mistakes, 8
Racism
and involuntary psychiatric
commitment, 301
and Tuskegee Study,
201–202, 206
Rationality
in Affordable Care Act, 380
in Kantian ethics, 12
in suicide, 40–41
Rawlsian justice, 15–16, 382–384
Reasonableness, 3–4
Red herring fallacy, 5–6
Reductio ad absurdum, 84, 94, 141
Relative risk, 122, 330
Relativism, moral, 8–9
Relevance, 1
Religious views
on abortion, 85, 88–90, 98
on assisted reproduction,
119–121
on embryos, 140
on reproductive cloning, 145
of suicide, 28
Remmelink Commission, 32
Reproduction, assisted. See
Assisted reproduction
Reproductive cloning, 144–147
myths about, 144–145
religious views on, 145
Requests to die. See also
Physician-assisted dying
autonomy and, 41–42
Bouvia case, 19–24
competence and, 40–41
Maynard case, 26–27
McAfee case, 24–26
non-terminal patients, 19–51
rationality and, 40–41
terminal patients, 19–51
Research. See Animal research;
Human research subjects
Research embryos, 133
Respect
embryos and, 142–143
for impaired babies, 174–175
Respirators. See Ventilators
Retransplantation, 252–253
Risk
absolute, 122, 330
relative, 122, 330
Roe v. Wade, 60, 84, 91–92, 96,
103–104
and Edelin case, 86
and embryonic research, 132
Rogosin dialysis, 260
Role-based ethics, 13
Roman Catholic Church. See
Catholic Church
Rome, ancient
death and suicide in, 27–28
infanticide in, 159
Rule of fourths, 314
Rule of rescue, 253–255
Sacrifice surgeries, on conjoined
twins, 264, 272
SARS, 362
Savior siblings, 11
Scapegoats, 347
Schizophrenia, 313–315
CATIE Study, 320–321
drug companies and research
on, 317–318
family dilemmas, 316–317
people with, research on,
312–321
problems of consent in
research, 315–316
psychiatric researchers, 318–319
Scope-of-morality premise, 9
Sedation, terminal, 46–47
Selfishness, and impaired babies,
166–167
Self-regarding acts, 30
Self-sacrifice, 17
Sentience, 186
Sexual (gender) identity, 285, 290.
See also Intersex persons
Sexual orientation, 290
Ship of fools, 303
Sickest first, for transplants,
254–255
Sick identity, 336–337
Single-payer system, 368
Slippery slope, 4–5
in anencephaly, 278–279
conceptual, 49
in embryo research, 141
empirical, 48–49
in physician-assisted dying, 32,
48–50
in Quinlan case, 60
Social Darwinism, 328
Social worth criteria, 245, 248
Sociobiology (Wilson), 6
Somatic cell nuclear transfer
(SCNT), 134
Souls, 89, 185
Spare embryos, 133
Speciesism, 186–188
Sperm transfer, 113
Spina bifida, 158–159, 174
Spindle proteins, 148
Spindles, 148–149
Sports, medical enhancement
in, 393
St. Elsewhere (television series), 85
Stacking, steroid, 395
State Children’s Health Insurance
Program (sCHIP), 371
Stealth eugenics, 342
Stem cells
acceptance, vs. tissue rejection,
144
adult, discovery of, 135
background on, 132–140
Bush (George W.) policy on,
135–136
ethical issues involving
embryos, 140–144
fraudulent claims on research,
135, 136–137
immortalized lines, creation
of, 134
induced pluripotent, 138
Obama policy on, 137
opportunity cost of missed
research on, 143–144
Sterilization, 328–329
Steroid use/abuse, 395–400
Stoicism, 13
Straw man, 4, 5–6
Structuralism, and HIV/AIDS,
357–358
Substituted judgment, 61, 63, 74
Suffering, relief of, 310–311
Suicide. See also Physician-assisted
dying; Requests to die
assisted, 39
autonomy and, 41–42
competence and, 40–41
genetic testing and risk of, 337
misconceptions about, 39–40
perspectives on, 27–34
philosophers on, 28–30
rationality and, 40–41
Superovulation, 110
SUPPORT Study, 41, 78, 175, 333
Surrogacy, 116–117
Sustenance. See also Feeding
tubes
refusal of, 20–24
The Switch (television movie), 26
Symptom relief, request to die
for, 42
Synergism, drug, 57
pen07945_sidx_I-5_I-12.indd 11 9/13/16 9:42 AM
I-12 Subject Index
Syphilis, 347
Guatemalan study, 211–212
latent, 200
nature and history of, 200–201
primary, 200
tertiary, 200–201
Tuskegee Study on, 200–209
Tarasoff decision, 307
Telemedicine, self-administered
abortion by, 105
Temporal priority vs. causality, 6
Temporary incompetence, 308
Terminal sedation, 46–47
Terri’s Law, 66–67
Tertiary syphilis, 200–201
Test-tube babies, 110–111, 132.
See also Assisted
reproduction
Theory of Justice (Rawls), 400
Therapy vs. experimentation,
275–277
Total harm, 172
Totality, principle of, 14
Traditional surrogacy, 116
Tragedy of the commons, 257, 377
Transgender persons, 288. See also
Intersex persons
Transplantation
animal-to-human (xenografts),
264–266, 269–277
babies as donors, 264, 266–269,
277–280
cosmetic vs. therapeutic, 237
costs vs. benefits of,
237–238, 257
death criteria for donor,
234–235
defense of, 236–237
ethical issues in, 221–239
first heart transplant, 221–224
good reasoning in, 2
informed consent for,
238–239
live organ donations for,
247–248
living donors for, 2–3
multiple listings and favoritism
in, 250–252
quality of life after, 235–236
retransplants in, 252–253
rule of rescue, 253–255
sickest first for, 254–255
supply and demand of organs
for, 247–248
Transplantation (journal), 256
Triage, 10
in HIV/AIDS, 357, 360
TRICARE, 371
Trolley problem, 10
Tu quoque, 5
Tuskegee Study, 200–209
ethical issues in, 205–209
media coverage, 206–207
racism and, 201–202, 206
Twins, conjoined, 159–160,
264, 290
separating, 269–270
United Network for Organ
Sharing (UNOS), 235,
250–252, 254–255, 267
Universalization, 2–3
Universal medical coverage, 368
Upbringing, appeals to, 7
Utilitarianism, 9–11
virtue/Kantian ethics vs., 9–10
Value, theory of, 9–10
Values inventory, 78
Vegetative state. See Persistent
vegetative state (PVS)
Veil of ignorance, 15–16, 381
Ventilators
extraordinary vs. ordinary
treatment, 76
futile vs. non-futile care, 75–76
pulling the plug vs. weaning,
60–61
Quinlan case, 57–62
religious views of withdrawal
of, 74
Vermont health-care plan,
375–376
Vertical transmission, 351
Veterans Health Administration
(VHA), 371–372
Virtue ethics, 13
utilitarianism vs., 9–10
Vivisectionists, 185
Washout period, 312–313
West Nile virus, 363
Whose Life Is It, Anyway?
(movie), 44
Who Shall Live (television
documentary), 245
Who Shall Play God? (Rifkin), 121
Withdrawing and forgoing
treatment, 77–78
Wrongful birth vs. wrongful life,
123, 171–172
Wronging vs. harming, 123–124
Wyatt v. Stickney, 305
Xenografts, 264–266
Yersinia pestis, 346
Zika virus, 363
pen07945_sidx_I-5_I-12.indd 12 9/13/16 9:42 AM
B-1
Bioethics Bowls are excellent opportunities to argue compelling issues in a com-
petitive context. In 2010, author Dr. Gregory Pence’s University of Alabama team
won the National Championship at the Intercollegiate Ethics Bowl, and his team
won the National Bioethics Bowl Championship at Duke University in 2011 and at
Florida State University in 2015. Following his successes at these bioethics bowls,
Dr. Pence has identified topics for debate below for each chapter of this text.
Bioethics Bowl Debate Topics
Bioethics Bowl Debate Topics
Chapter 2. Did Brittany Maynard die too soon? Should she have been
allowed to die? Was Dr. Anna Pou a heroine or villain? What
would you have done in her place?
Chapter 3. Should patients in persistent vegetative states be assumed to be
in minimally conscious states, unless proven otherwise?
Chapter 4. Should abortion doctors have admitting privileges to local hos-
pitals and should women undergoing abortions have elaborate
consent forms comparable to standard kinds of surgery?
Chapter 5. Should limits of age be put on elderly women who want to
gestate embryos? Should limits be put on the number of embryos
implanted during assisted reproduction?
Chapter 6. Would it be permissible to try to originate a child by reproduc-
tive cloning?
Chapter 7. Is it permissible to not operate on a Down baby if it is permis-
sible to abort a Down fetus in the second trimester?
Chapter 8. Do primates still need to be used at all in psychological and
medical research?
Chapter 9. Should medical research in developing countries be held to the
same standard as medical research in America? What about psy-
chological research, as in the study on Romanian orphans?
pen07945_em_B-1_B-8.indd 1 9/9/16 8:28 AM
B-2 Bioethics Bowl Debate Topics
Chapter 10. Do surgeons abuse patients in trying to be the first to do a new
kind of surgery?
Chapter 11. Should alcoholics get liver transplants?
Chapter 12. Should one baby ever be used to help another?
Chapter 13. Should intersex children be allowed to wait until they are teen-
agers to decide their gender?
Chapter 14. Is research on people with schizophrenia usually ethical? Or bad
for such people?
Chapter 15. In taking presymptomatic tests, is the truth ever too toxic for
some people to handle?
Chapter 16. Are some methods immoral for stopping the global spread
of HIV?
Chapter 17. Is the Affordable Care Act creating more justice?
Chapter 18. Is all medical enhancement cheating, in one form or another?
Chapter 19. Is Kant correct that Alcoholics Anonymous contradicts itself
about how to stop drinking?
pen07945_em_B-1_B-8.indd 2 9/9/16 8:28 AM
Cover
Title Page
Copyright Page
Preface
About the Author
Acknowledgments
Brief Contents
Contents
Chapter 1. Good and Bad Ethical Reasoning; Moral Theories and Principles
Good Reasoning in Bioethics
Giving Reasons
Universalization
Impartiality
Reasonableness
Civility
Mistakes in Ethical Reasoning
Slippery Slope
Ad Hominem (“To the Man”)
Tu Quoque (Pronounced “Tew-kwoh-kway”)
Straw Man/Red Herring
Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because of This”)
Appeal to Authority
Appeals to Feelings and Upbringing
Ad Populum
False Dichotomy (“Either-Or” Fallacy)
Equivocation
Begging the Question
Ethical Theories, Principles, and Bioethics
Moral Relativism
Utilitarianism
Problems of Utilitarianism
Kantian Ethics
Problems of Kantian Ethics
The Ethics of Care
Virtue Ethics
Natural Law
Theories of Justice
Libertarianism
Rawls’s Theory of Justice
Marxism
Four Principles of Bioethics
Final Comment
Discussion Questions
Notes
Chapter 2. Requests to Die: Terminal and Nonterminal Patients
The Case of Elizabeth Bouvia (1983–Present)
The Legal Battle: Refusing Sustenance
The Case of Larry McAfee (1985–1995)
The Case of Brittany Maynard (2013–2014)
Background: Perspectives on Dying Well
Greece and Rome
The Bible and Religious Views
Philosophers on Voluntary Death
The Nazis and “Euthanasia”
Hospice and Palliative Care
Dying in Holland
Jack Kevorkian
Dr. Anna Pou
Recent Legal Decisions
Oregon, 1994
Ancient Greece and the Hippocratic Oath
Ethical Issues
The Concept of Assisted Suicide
Misconceptions about Suicide
Rationality and Competence
Autonomy
Inadequate Resources and Poor Treatment
Social Prejudice and Physical Disabilities
Is Killing Always Wrong?
Killing versus Letting Die
Relief of Suffering
Slippery Slopes
Physicians’ Roles, Cries for Help, and Compassion
Mistakes and Abuses
Cries for Help
Further Reading and Resources
Discussion Questions
Notes
Chapter 3. Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo
The Quinlan Case
Pulling the Plug or Weaning from a Ventilator?
Substituted Judgment and Kinds of Cases
The Cruzan Case
The Terri Schiavo Case
Enter Lawyers and Politicians
What Schiavo’s Autopsy Showed
Ethical Issues
Standards of Brain Death
Chances of Regaining Consciousness from Coma and PVS
Terri’s Chances of Re-awakening
Compassion and Its Interpretation
Religious Issues
Nagging Questions
Disability Issues
Some Distinctions
Advance Directives
The Schiavo Case, Bioethics and Politics
Further Reading and Resources
Discussion Questions
Notes
Chapter 4. Abortion: The Trial of Kenneth Edelin
Kenneth Edelin’s Controversial Abortion
Background: Perspectives on Abortion
The Language of Abortion
Abortion and the Bible
The Experience of Illegal Abortions
1962: Sherri Finkbine
1968: Humanae Vitae
1973: Roe v. Wade
Abortion Statistics
Ethical Issues
Edelin’s Actions
Personhood
Personhood as a Gradient
The Deprivation Argument: Marquis and Quinn on Potentiality
Viability
The Argument from Marginal Cases
Thomson: A Limited Pro-Choice View
Feminist Views
Genetic Defects
God Must Want Me to Be Pregnant, or Else I Wouldn’t Be
A Culture of Life or a Culture of Death?
Abortion and Gender Selection
Abortion as a Three-Sided Issue
Antiabortion Protests and Violence
Live Birth Abortions and How Abortions Are Done
Fetal Tissue Research
Emergency Contraception
Maternal versus Fetal Rights
Viability
The Supreme Court Fine-Tunes Roe v. Wade
Partial Birth Abortions
States Restrict Abortion Clinics
Self-Administered Abortion by Telemedicine
Further Reading
Discussion Questions
Notes
Chapter 5. Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents
The Octomom and the Gosselins
Louise Brown, the First Test Tube Baby
Harm to Research from Alarmist Media
Later Developments in Assisted Reproduction
Sperm and Egg Transfer
Freezing Gamete Material
Ethical Issues
Payment for Assisted Reproduction: Egg Donors
Payment for Assisted Reproduction: Adoption
Paid Surrogacy: The Baby M and Jaycee Cases
Multiple Births: Before the Octomom and Gosselins
Older Parents
Gender Selection
Unnatural
Physical Harm to Babies Created in New Ways
Psychological Harm to Babies Created in New Ways
Paradoxes about Harm and Reproduction
Wronging versus Harming
Harm by Not Knowing One’s Biological Parents?
Is Commercialization of Assisted Reproduction Wrong?
Screening for Genetic Disease: A New Eugenics?
Designer Babies?
Assisted Reproduction Worldwide
Time to Regulate Fertility Clinics?
Conclusion
Further Reading
Discussion Questions
Notes
Chapter 6. Embryos, Stem Cells, and Reproductive Cloning
Background on Embryonic Research, Cloning, and Stem Cells
Ethical Issues about Reproductive Cloning
Valuable from Conception
Potential for Personhood
Slippery Slopes
Reductio ad Absurdum
The Interest View
Embryos and Respect
The Opportunity Cost of Missed Research
My Tissue
Moot?
Reproductive Cloning
Reproductive Cloning: Myths about Cloned Persons
Against the Will of God?
The Right to a Unique Genetic Identity
Unnatural and Perverse
The Right to an Open Future
Problems with Primate Cloning
The Spindle Problem
Inequality
Good of the Child
Only Way to Have One’s Own Baby
Stronger Genetic Connection
Liberty
A Rawlsian Argument for Cloning and Choice
Links between Embryonic and Reproductive Cloning
Further Readings
Discussion Questions
Notes
Chapter 7. Impaired Babies and the Americans with Disabilities Act
1971: The Johns Hopkins Cases
1970s: Pediatric Intensivists Go Public
Ancient History
1981: The Mueller Case: Conjoined Twins
1982: The Infant Doe Case
1982–1986: The Baby Doe Rules
1983–1984: The Baby Jane Doe Case
1983–1986: Baby Jane’s Case in the Courts
Follow-up on Baby Jane Doe
Media Ethics and Bias
Ethical Issues
Selfishness
Personal versus Public Cases
Abortion versus Infanticide
Killing versus Letting Die with Newborns
Personhood of Impaired Neonates
Kinds of Euthanasia
Degrees of Defect
Wrongful Birth versus Wrongful Life
1984: Legislation
1992: The Americans with Disabilities Act (ADA)
The Strength of Disability Advocates
Conceptual Dilemma: Supporting Both Choice and Respect
UAB’s Support Study on Premies
Further Reading
Discussion Questions
Notes
Chapter 8. Medical Research on Animals
The Animal Research Front and Gennarelli’s Research
Evaluating the Philadelphia Study
PETA and Edward Taub’s Research on Monkeys
The Law and Animal Research
Numbers and Kinds of Animals in Research
Descartes on Animal Pain
C. S. Lewis on Animal Pain
Philosophy of Mind and Ethics
Peter Singer on Speciesism
Tom Regan on Animal Rights
Why We Need Animals in Research: The Official View
Critiquing the Official View
Chimpanzees and Research
Further Reading
Discussion Questions
Notes
Chapter 9. Medical Research on Vulnerable Populations
Infamous Medical Experiments
William Beaumont
Nazi Medical Research
Josef Mengele
The Nuremberg Code
Questionable American Research
The Tuskegee Study (or “Study”)
Nature and History of Syphilis
The Racial Environment
Development of the Tuskegee Study
Ethical Issues in the Tuskegee Study
Informed Consent and Deception
Racism
Media Coverage
Harm to Subjects
Effects on Subjects’ Families
Kant and Motives of Researchers
Other Studies Like the Tuskegee Study
HIV Prevention in Africa: Another Tuskegee Study?
The Krieger Lead Paint Study
1946–1948: The Guatemalan Syphilis Study
Financial Conflicts and Twenty-First-Century Research
Toward International Standards of Research Ethics
The Collaborative Model
The Death of Jesse Gelsinger
The Bucharest Early Intervention Project (BEIP)
Further Reading
Discussion Questions
Notes
Chapter 10. Ethical Issues in First-Time Organ Surgeries
The First Heart Transplant
Fame Cometh
The Post-Transplant Era: “Surgery Went Nuts”
Barney Clark’s Artificial Heart
The Implant
Post-Clark Implants
Limb and Face Transplants
Ethical Issues in First-Time Surgeries
The Desire to Be First and Famous
Concerns about Criteria of Death
Quality of Life
Defending Surgery
Cosmetic versus Therapeutic Surgery
Expensive Rescue versus Cheap Prevention
Real Informed Consent?
Conclusion
Further Reading
Discussion Questions
Notes
Chapter 11. The God Committee
The God Committee and Artificial Kidneys
Shana Alexander Publicizes the God Committee; Starts Bioethics
The End Stage Renal Disease Act (ESRDA)
The Birth of Bioethics
Supply and Demand of Donated Organs
Ethical Issues in Allocating Scarce Medical Resources
Social Worth
Personal Responsibility for Illness and Expensive Resources
Kant and Rescher on Just Allocation
Wealth, Celebrities, Justice, and Waiting Lists for Organs
Retransplants
The Rule of Rescue
Sickest First, UNOS, and the Rule of Rescue
Living Donors
Costs and the Medical Commons
Non-Heart-Beating Organ Transplantation
The God Committee, Again
Further Reading
Discussion Questions
Notes
Chapter 12. Using One Baby for Another
1984: Baby Fae
1987: Baby Gabriel and Baby Holc
1992: Baby Theresa
1993: The Lakeberg Case: Separating Conjoined Twins
Ethical Issues
Use of Animals as Resources for Humans
Alternative Treatments?
Babies as Subjects of Research
Informed Consent
The Media
Therapy or Research?
Ethics and Terminology: Infants as “Donors”
Anencephalics and Brain Death
Saving Other Children
Costs and Opportunity Costs
Conclusion
Further Reading
Discussion Questions
Notes
Chapter 13. Ethical Issues in the Treatment of Intersex and Transgender Persons
David Reimer
Intersex People
Congenital Adrenal Hyperplasia
Fetal Dex
Ethical Issues
What Is Normal and Who Defines It?
Secrecy in the Child’s Best Interest
Ending the Shame and Secrecy
Transgender/Intersex and Civil Rights
Nature or Nurture, or Both?
An Alternative, Conservative View
Ken Kipnis’s Proposals
Medical Exceptions
The Dutch Approach: Delaying Puberty
Conclusion
Further Reading
Discussion Questions
Notes
Chapter 14. Involuntary Psychiatric Commitment and Research on People with Schizophrenia
The Case of Joyce Brown
The Legal Conflict
Ideology and Insanity
Patients’ Rights
Legal Victories for Psychiatric Patients
Deinstitutionalization
Violence and the Mentally Ill Homeless in the Cities
Ethical Issues
Paternalism, Autonomy, and Diminished Competence
Homelessness and Commitment
Psychiatry and Commitment
Suffering and Commitment: Benefit and Harm
Housing for the Mentally Ill as an Ethical Issue
Mass Shootings and the Mentally Ill
Ethical Issues in Research on People with Schizophrenia
Washout Period
Schizophrenia
Problems of Consent in Schizophrenia Research
Family Dilemmas
Drug Companies and Research on Schizophrenia
Researchers Defend Themselves
Harm to Subjects and the Kantian Ideal of Patient Care
Structural Critiques of Modern Psychiatric Research
The CATIE Study
Further Reading
Discussion Questions
Notes
Chapter 15. Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy Wexler, Angelina Jolie, Diabetes and Alzheimer’s
Case 1: Angelina Jolie and Genetic Testing for Cancer
Background: Basic Genetics
Case 2: Nancy Wexler and Huntington’s Disease
The Eugenics Movement
Case 3: Testing for Diabetes
Case 4: Testing for Alzheimer’s Disease
Ethical Issues
Preventing Disease
Testing as Self-Interest
Testing Only to Hear Good News
Testing as a Duty to One’s Family
Testing One’s Family by Testing Oneself
Personal Responsibility for Disease
Testing and Sick Identities
Preventing Suicide by Not Knowing
Testing Only with Good Counseling
Genetic Testing and Insurance
Premature Announcements and Oversimplifications
Caveat Emptor: Making Money from Genetic Testing
Preventing Genetic Disease
Embryos, Genetics, and CRISPR
Further Reading
Discussion Questions
Notes
Chapter 16. Ethical Issues in Stopping the Global Spread of Infectious Diseases: AIDS, Ebola, and Zika
Background: Epidemics, Plagues, and AIDS
A Brief History of AIDS
AIDS and Ideology
Transmission of HIV and Testing for HIV
Kimberly Bergalis’s Case
Two Ethical Issues in Stopping the Spread of AIDS
Homosexuality
HIV Exceptionalism
Stopping the Worldwide Spread Of HIV: Four Views
Educational Prevention
Feminism
Triage
Structuralism
Replies and Rebuttals
Progress
Ethical Issues in Preparing for Future Pandemics
Further Reading
Discussion Questions
Notes
Chapter 17. Ethical Issues of the Patient Protection and Affordable Care Act
Rosalyn Schwartz
Universal Medical Coverage
1962 to Present: Canada
The National Health Service in England
The American Medical System: 1962–2012
1965: Medicare Begins
1965: Medicaid Begins
1997: CHIP
Tricare and VA Hospitals
1985: COBRA
1986: EMTALA
1996: HIPAA
1962–2012: Coverage at Work through Private Plans
Blue Cross/Blue Shield and Kinds of Ratings
Oregon, Vermont, and Massachusetts Cover Everyone
2010: The Patient Protection and Affordable Care Act
For and Against the ACA
Opposing the ACA #1: Illegal Immigrants
Favoring the ACA #1: Illegal Immigrants
Favoring the ACA #2: Greater Efficiency
Opposing the ACA #2: Federal Bureaucracy Is Inefficient
Favoring the ACA #3: Making Medicine Rational
Opposing the ACA #3: Government Cannot Make Medical Finance Rational
Opposing the ACA #4: Health Care Is Not a Right
Favoring the ACA #4: Minimal Health Care Is a Right
Opposing the ACA #5: Health Care Is Not a Right
Favoring the ACA #5: Costs Can Be Controlled
Opposing the ACA #6: Intergenerational Injustice
Favoring the ACA #6: No Intergenerational Injustice
Update: Six Years of the Patient Protection and Affordable Care Act
Further Reading
Discussion Questions
Notes
Chapter 18. Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)
Famous Cases of Enhancement
Oscar Pistorius and his Cheetahs
Tess and Prozac
Cycling and Doping
Ritalin, Adderall, and ADHD
Personal Body Shaping and Surgery
Ethical Issues of Medical Enhancement
What Counts as an Enhancement?
Positional Advantage
An Arms Race
End Secrecy; Legalize Enhancements
Inauthentic
Cheating
Not So Dangerous
Bad Effects of Legalization
The Role of Physicians
Disability and Enhancements
Conclusions
Further Reading
Discussion Questions
Notes
Chapter 19. Ethical Issues in Treating Alcoholism
The Case of Ernie Crowfeather
Free Will
Is Alcoholism a Disease?
Sociologists on Alcoholism
Neuroscience on Alcoholism and Addiction
Geneticists on Alcoholism
Kant on Human Dignity, Free Will, and Alcoholism
Kant’s Critique of the Disease Model
Fingarette’s Research
Harm Reduction versus Moralism in Medicine
Compromises
Conclusion
Discussion questions
Further Reading
Notes
NAME INDEX
SUBJECT INDEX
BIOETHICS BOWL DEBATE TOPICS
