week 4 discussion As healthcare organizations become more complex and our focus on the patient experience expands, nurses are leading and participating in

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 what ways is EBP applied where you work or where you do clinicals?
  • Discuss the findings of a QI initiative or study from either your clinical location/hospital website or another online source.

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
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Some ancillaries, including electronic and print components, may not be available to customers outside
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ISBN 978-1-259-90794-4
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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

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Education does not guarantee the accuracy of the information presented at these sites.

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pen07945_fm_i_xxii.indd 2 09/12/16 8:52 PM

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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• An Instructor’s Manual for each chapter with full chapter outlines, sample test
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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 …

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