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Brief Contents

Chapter 1 Ethical Reasoning, Moral Theories, Principles, and Chapter 2 Requests to Die: Non-Terminal Patients Chapter 3 Requests to Die: Terminal Patients Chapter 4 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo Chapter 5 Abortion: The Trial of Kenneth Edelin Chapter 6 Assisted Reproduction, Multiple Births, and Elderly Parents Chapter 7 Embryos, Stem Cells, and Cloning Chapter 8 The Ethics of Treating Impaired Babies Chapter 9 Medical Research on Animals Chapter 10 Medical Research on Vulnerable Human Subjects Chapter 11 Surgeons’ Desire for Fame: Ethics of the First Transplants Chapter 12 Just Distribution of Organs: God Committee and Personal Responsibility Chapter 13 Using One Baby for Another: Babies Fae, Gabriel, and Theresa and Conjoined Twins Chapter 14 Ethical Issues of Intersex and Transgender Persons Chapter 15 Involuntary Psychiatric Commitment: The Case of Joyce Brown Chapter 16 Ethical Issues in Testing for Genetic Disease Chapter 17 Ethical Issues in Stopping the Global Spread of AIDS Chapter 18 Ethical Issues with the Affordable Care Act Chapter 19 Ethical Issues in Medical Enhancement

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Contents

PREFACE v 1. Ethical Reasoning, Moral Theories, Principles, and Bioethics 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 5 Straw Man/Red Herring 5 Post Hoc, Ergo Propter Hoc 6 Appeal to Authority 6 Appeals to Feelings and Upbringing 7 Ad populum 7 False Dichotomy 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 Theories of Justice 15 Libertarianism 15 Rawls’ Theory of Justice 15 xi

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Marxism 16 Four Principles of Bioethics 16 2 . Requests to Die: Non-Terminal Patients 19 The Case of Elizabeth Bouvia 19 The Legal Battle: Refusing Sustenance 20 The Case of Larry McAfee 25 The Case of 27 Background: Perspectives on Suicide 27 Greece and Rome 27 Philosophers on Voluntary Death 28 The Concept of Assisted Suicide 31 Ethical Issues: For and against Assisted Suicide 31 Easy to Kill Oneself? 31 Rationality and Competence 32 Autonomy 33 Treating Depression, Pain, and Symptoms Well 34 Social Prejudice and Physical Disabilities 34 Structural Discrimination Against the Disabled 35 Disability Culture 36 Further Reading and Resources 37 Discussion Questions 37

3. Requests to Die: Terminal Patients 38 Holland 38 39 Dr. Quill: Another Approach to Dying 41 Dr. Pou’s Case, Continued 41 Oregon’s Legalization 42 Background: Ancient Greece and the Hippocratic Oath 43 Dr. Pou’s Case, continued 44 The Nazis and “Euthanasia” 44 Modern Developments 46 Recent Legal Decisions 46 Ethical Issues 47 Direct Arguments—Physician-Assisted Dying 47 Killing Is Always Wrong 47 Killing Is Not Always Wrong 48 Killing vs. Letting Die 48 Relief of Suffering 49 Patient Autonomy 50 Indirect Arguments about Physician-Assisted Dying 51 The Slippery Slope 51 Inefficient Means 53 A Financial Empirical Slope? 54

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The Roles of Physicians 54 Mistakes and Abuses 55 Cries for Help 55 Anna Pou, Again: Hero or Villain? 56 Further Reading 57 Discussion Questions 58

4. Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 59 The Quinlan Case 59 Pulling the Plug or Weaning from a Ventilator? 62 Substituted Judgment and Kinds of Cases 63 The Cruzan Case 63 The 66 Enter Lawyers and Politicians 67 What Schiavo’s Autopsy Showed 70 Ethical Issues 71 Standards of Brain Death 71 Chances of Regaining Consciousness from Coma and PVS 72 Terri’s Chances of Re-Awakening 75 Compassion and Its Interpretation 75 Religious Issues 76 Nagging Questions 76 Disability Issues 77 Some Distinctions 77 Advance Directives 80 The Schiavo Case, Bioethics and Politics 80 Further Reading and Resources 81 Discussion Questions 81 5 . Abortion: The Trial of Kenneth Edelin 83 Kenneth Edelin’s Controversial Abortion 83 Background: Perspectives on Abortion 87 The Language of Abortion 87 Abortion and the Bible 87 The Experience of Illegal Abortions 89 1962: Sherri Finkbine 90 1968: Humanae Vitae 90 1973: Roe v. Wade 90 Abortion Statistics 91 Ethical Issues 91 Edelin’s Actions 91 Personhood 91 Personhood as a Gradient 92 The Deprivation Argument: Marquis and Quinn on Potentiality 93 Viability 94 The Argument from Marginal Cases 95 Thomson: A Limited Pro-Choice View 96

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Feminist Views 96 Genetic Defects 97 A Culture of Life or a Culture of Death? 97 Abortion and Gender Selection 98 Abortion as a Three-Sided Issue 99 Anti-abortion Protests and Violence 99 Live Birth Abortions and How Abortions Are Done 100 Fetal Tissue Research 100 Emergency Contraception 101 Maternal versus Fetal Rights 101 Viability 102 The Supreme Court Fine-Tunes Roe v. Wade 103 Partial Birth Abortions 104 States Restrict Abortion Clinics 104 Further Reading 104 Discussion Questions 105

6 . Assisted Reproduction, Multiple Births, and Elderly Parents 106 The Octamom and the Gosselins 106 Background: Louise Brown, The First Test Tube Baby 107 Harm to Research from Alarmist Media 108 Later Developments in Assisted Reproduction 109 Sperm and Egg Transfer 109 Freezing Gamete Material 111 Payment for Assisted Reproduction: Egg Donors 112 Payment for Assisted Reproduction: Adoption 112 Paid Surrogacy: The Baby M and Jaycee Cases 113 Multiple Births: Before the Octamom and Gosselins 114 Older Parents 115 Gender Selection 116 Ethical Issues 116 Unnatural 116 Physical Harm to Babies Created in New Ways 118 Psychological Harm to Babies Created in New Ways 119 Paradoxes about Harm and Reproduction 119 Wronging versus Harming 120 Harm by Not Knowing One’s Biological Parents? 121 Is Commercialization of Assisted Reproduction Wrong? 122 Screening for Genetic Disease: A New Eugenics? 122 Designer Babies? 123 Assisted Reproduction Worldwide 124 Time to Regulate Fertility Clinics? 125 Conclusions 126 Further Reading 126 Discussion Questions 126

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7 . Embryos, Stem Cells, and Cloning 128 Historical Background of Embryonic Research 128 Two Important Cases 129 History: Embryo Research, Cloning, and Stem Cells 130 Ethical Issues Involving Embryos in Research 135 Valuable from Conception 136 Potential for Personhood 136 Slippery Slopes 136 Reductio ad Absurdum 137 The Interest View 137 Embryos and Respect 138 The Opportunity Cost of Missed Research 139 My Tissue 139 Moot? 140 Reproductive Cloning 140 Reproductive Cloning: Myths about Cloned Persons 140 Against the Will of God? 141 The Right to a Unique Genetic Identity 141 Unnatural and Perverse 142 The Right to an Open Future 142 Abnormalities 143 Inequality 144 Good of the Child 144 Only Way to Have One’s Own Baby 146 Stronger Genetic Connection 146 Liberty 147 A Rawlsian Argument for Cloning and Choice 148 Links Between Embryonic and Reproductive Cloning 148 Further Readings 149 Discussion Questions 149

8 . The Ethics of Treating Impaired Babies 150 1971: The Johns Hopkins Cases 150 1970s: Pediatric Intensivists Go Public 151 Ancient History 152 1981: The Mueller Case: Conjoined Twins 152 1982: The Infant Doe Case 153 1982–1986: The Baby Doe Rules 154 1983–1984: The Baby Jane Doe Case 155 1983–1986: Baby Jane’s Case in the Courts 156 Follow-up on Baby Jane Doe 157 Media Ethics and Bias 159 Ethical Issues 160 Selfishness 160 Personal versus Public Cases 160 Abortion versus Infanticide 161 Killing versus Letting Die with Newborns 162

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Personhood of Impaired Neonates 162 Kinds of Euthanasia 163 Degrees of Defect 163 Wrongful Birth versus Wrongful Life 165 1984: Legislation 166 1992: The Americans with Disabilities Act (ADA) 166 The Strength of Disability Advocates 167 Conceptual Dilemma: Supporting Both Choice and Respect 168 Further Reading 168 Discussion Questions 169

9 . Medical Research on Animals 170 The Animal Liberation Front and Gennarelli’s Research 170 Evaluating the Philadelphia Study 172 PETA and Edward Taub’s Research on Monkeys 173 The Law and Animal Research 174 Numbers and Kinds of Animals in Research 175 Descartes on Animal Pain 176 C. S. Lewis on Animal Pain 177 Philosophy of Mind and Ethics 177 Peter Singer on Speciesism 178 Tom Regan on Animal Rights 179 Why We Need Animals in Research: The Official View 181 Critiquing the Official View 182 Chimpanzees and Research 183 Further Reading 184 Discussion Questions 184

10. Medical Research on Vulnerable Human Subjects 186 Infamous Medical Experiments 186 The Nuremberg Code 188 The Tuskegee Study (or “Study”) 190 Nature and History of Syphilis 190 The Racial Environment 191 Development of the Tuskegee Study 192 A Study in Nature Begins 192 The Middle Phase: Poor Design 193 Spinal Taps and Deception 193 Revelation of the Study to the World 194 Ethical Issues of the Tuskegee Study 196 and Deception 196 Racism 196 Media Coverage 197 Harm to Subjects 197 Effects on Subjects’ Families 198 Kant and Motives of Researchers 199

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Hiv Prevention in Africa: Another Tuskegee Study? 199 The Krieger Lead Paint Study 201 1946–1948: The Guatemalan Syphilis Study 202 Financial Conflicts and Twenty-First-Century Research 202 Toward International Standards of Research Ethics 203 The Collaborative Model 204 The Death of 205 Further Reading 207 Discussion Questions 207

1 1 . Surgeons’ Desire for Fame: Ethics of the First Transplants 208 The First Heart Transplant 208 Fame Cometh 211 The Post-Transplant Era: “Surgery Went Nuts” 211 Barney Clark’s Artificial Heart 212 The Implant 213 Post-Clark Implants 215 Limb Transplants 217 Face Transplants 217 Ethical Issues 219 The Desire to Be First and Famous 219 Concerns about Criteria of Death 221 Quality of Life 222 Defending Surgery 224 Cosmetic versus Therapeutic Surgery 224 Expensive Rescue versus Cheap Prevention 224 Real Informed Consent? 225 Conclusion 226 Further Reading 226 Discussion Questions 227

12. Just Distribution of Organs: The God Committee and Personal Responsibility 228 The God Committee and Artificial Kidneys 228 Shana Alexander Publicizes the God Committee; Starts Bioethics 230 The End-Stage Renal Disease Act (ESRD) 231 The Birth of Bioethics 232 Supply and Demand of Donated Organs 232 Ethical Issues 233 Social Worth 233 Personal Responsibility for Illness and Expensive Resources 234 Kant and Rescher on Just Allocation 235 Wealth, Celebrities, Justice, and Waiting Lists for Organs 236 Retransplants 238 The Rule of Rescue 239 Sickest First, UNOS, and the Rule of Rescue 240

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Living Donors 241 Costs and the Medical Commons 243 Non-Heart-Beating Organ Transplantation 244 The God Committee, Again 246 Further Reading 247 Discussion Questions 247

13. Using One Baby for Another: Babies Fae, Gabriel, and Theresa and Conjoined Twins 249 1984: Baby Fae 249 1987: Baby Gabriel and Paul Holc 251 1992: Baby Theresa 253 1993: The Lakeberg Case: Separating Conjoined Twins 254 Ethical Issues 255 Use of Animals as Resources for Humans 255 Alternative Treatments? 256 Babies as Subjects of Research 257 Informed Consent 258 The Media 259 Therapy or Research? 260 Ethics and Terminology: Infants as “Donors” 262 Anencephalics and Brain Death 263 Saving Other Children 265 Costs and Opportunity Costs 265 Conclusions 266 Further Reading 266 Discussion Questions 266

14. Ethical Issues of Intersex and Transgender Persons 267 David Reimer 267 Intersex People 270 Congenital Adrenal Hyperplasia 271 Fetal Dex 272 Ethical Issues 273 What Is Normal and Who Defines It? 273 Secrecy in the Child’s Best Interest 274 Ending the Shame and Secrecy 274 Transgender/Intersex and Civil Rights 275 Nature or Nurture, or Both? 276 An Alternative, Conservative View 276 Ken Kipnis’ Proposals 277 Medical Exceptions 277 The Dutch Approach: Delaying Puberty 278 Conclusions 278 Further Reading 278 Discussion Questions 279

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15. Involuntary Psychiatric Commitment: The Case of Joyce Brown 280 The Case of Joyce Brown 280 The Legal Conflict 281 Ideology and Insanity 284 Patients’ Rights 285 Legal Victories for Psychiatric Patients 286 Deinstitutionalization 287 Violence and the Mentally Ill Homeless in the Cities 288 Ethical Issues 289 Paternalism, Autonomy, and Diminished Competence 289 Homelessness and Commitment 290 Psychiatry and Commitment 291 Suffering and Commitment: Benefit and Harm 292 Housing for the Mentally Ill as an Ethical Issue 293 Mass Shootings and the Mentally Ill 294 Further Reading 295 Discussion Questions 295

16. Ethical Issues in Testing for Genetic Disease 296 Case 1: Angelina Jolie and Genetic Testing for Cancer 296 Background: Basic Genetics 297 Case 2: Nancy Wexler and Huntington’s Disease 297 The Eugenics Movement 299 Case 3: Testing for Diabetes 300 Case 4: Testing for Alzheimer’s disease 302 Ethical Issues 303 Preventing Disease 303 Testing as Self-Interest 303 Testing Only to Hear Good News 304 Testing as a Duty to One’s Family 305 Testing One’s Family by Testing Oneself 306 Personal Responsibility for Disease 307 Testing and Sick Identities 308 Preventing Suicide by Not Knowing 309 Testing Only with Good Counseling 309 Genetic Testing and Insurance 310 Premature Announcements and Over simplifications 310 Caveat Emptor: Making Money from Genetic Testing 311 Preventing Genetic Disease: Final Thoughts 312 Further Reading 313 Discussion Questions 314

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17. Ethical Issues in Stopping the Global Spread of AIDS 315 Background: Epidemics, Plagues, and AIDS 315 A Brief History of AIDS 316 AIDS and Ideology 317 Transmission of HIV and Testing for HIV 319 Kimberly Bergalis’s Case 320 Three Ethical Issues in Stopping the Spread of AIDS 321 Homosexuality 321 HIV Exceptionalism 322 Stopping the Worldwide Spread of HIV: Five Views 322 Educational Prevention 324 Feminism 325 Triage 326 Structuralism 327 Replies and Rebuttals 328 Conclusion 331 Further Reading 332 Discussion Questions 332

18. Ethical Issues of the Affordable Care Act 333 Rosalyn Schwartz 333 Universal Medical Coverage 334 1962 to Present: Canada 334 The National Health Service in England 335 The American Medical System: 1962–2012 335 1965: Medicare Begins 336 1965: Medicaid Begins 336 1997: CHIP 337 Tricare and VA Hospitals 337 1985: COBRA 338 1986: EMTALA 338 1993–1994: Clinton’s Health Care Security Bill 338 1996: HIPPA 339 1962–2012: Coverage at Work through Private Plans 339 Blue Cross/Blue Shield and Kinds of Ratings 340 Oregon, Vermont, and Massachusetts Cover Everyone 341 2010: The Patient Protection and Affordable Care Act 342 For and Against The ACA 343 Opposing the ACA #1: Illegal Immigrants 343 Favoring the ACA #1: Illegal Immigrants 344 Favoring the ACA #2: Greater Efficiency 345 Opposing the ACA #2: Federal Bureaucracy Is Inefficient 345 Favoring the ACA #3: Making Medicine Rational 346 Opposing the ACA #3: Government Cannot Make Medical Finance Rational 346

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Opposing the ACA #4: Health Care Is Not a Right 347 Favoring the ACA #4: Minimal Health Care Is a Right 348 Opposing the ACA #5: Health Care Is Not a Right 350 Favoring the ACA #5: Costs Can Be Controlled 352 Opposing the ACA #6: Intergenerational Injustice 353 Favoring the ACA #6: No Intergenerational Injustice 354 Further Reading 354 Discussion Questions 354

19. Ethical Issues in Medical Enhancement 356 Ethical Issues of Medical Enhancement 357 What Counts as an Enhancement? 357 Positional Advantage 358 An Arms Race 358 End Secrecy; Legalize Enhancements 359 Inauthentic 359 Cheating 360 Not Dangerous 362 Bad Effects of Legalization 363 The Role of Physicians 363 Conclusions 364 Further Reading 364 Discussion Questions 364

NOTES N–1 NAME INDEX I–0 SUBJECT INDEX I–0

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