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Medical Ethics Accounts of

Ground-Breaking Cases EIGHTH EDITION

Gregory E. Pence University of Alabama at Birmingham

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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 © 2015, 2011, and 2008. No part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the prior written consent of McGraw-Hill Education, including, but not limited to, in any network or other electronic storage or transmission, or broadcast for distance learning.

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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  https://lccn.loc.gov/2016026704

The Internet addresses listed in the text were accurate at the time of publication. The inclusion of a website does not indicate an endorsement by the authors or McGraw-Hill Education, and McGraw-Hill Education does not guarantee the accuracy of the information presented at these sites.

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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: [email protected]

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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

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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 …