Basic Issues In Medical Ethics - The Eye

95028 FM 02/27/07 18:42 Page xivxivContentsPART II: CONTROLS269Chapter 5 GENETIC CONTROL270CASE PRESENTATION: Stem Cells: Promises andProblems 271BRIEFING SESSION 276Genetic Intervention: Screening, Counseling,and Diagnosis 277Genetic Disease 277Genetic Screening279Genetic Counseling 282Prenatal Genetic Diagnosis 283Ethical Difficulties with Genetic Intervention 286Eugenics 288Negative and Positive Eugenics 289Use of Desirable Germ Cells 290Ethical Difficulties with Eugenics 290Genetic Research, Therapy, and Technology 291Recombinant DNA 292Gene Therapy 293Biohazards 294Ethical Difficulties with Genetic Research,Therapy, and Technology 295SOCIAL CONTEXT: Genetic Testing andScreening 296SOCIAL CONTEXT: Genetic Testing: Too MuchPrevention? 300CASE PRESENTATION: Huntington’s Disease:Genetic Testing and Ethical Dilemmas 303CASE PRESENTATION: GENE THERAPY 306SOCIAL CONTEXT: The Human Genome Project:The Holy Grail of Biology 309READINGS 312Section 1: Embryonic Stem Cells: The Debate 312President’s Council on Bioethics: Cloning andStem Cells 312Pontifical Academy for Life: Declaration on theProduction and the Scientific and TherapeuticUse of Human Embryonic Stem Cells 316Michael J. Sandel: The Moral Status of HumanEmbryos 318Section 2: Genetic Selection: A new Eugenics? 320Julian Savulescu: Procreative Beneficence:Why We Should Select the Best Children 320Leon R. Kass: Implications of PrenatalDiagnosis for the Human Rights to Life 326Section 3: Dilemmas of Genetic Choice 333Jeff McMahan: The Morality of Screening forDisability 333Dena S. Davis: Genetic Dilemmas and theChild’s Right to an Open Future 337Laura M. Purdy: Genetics and ReproductiveRisk: Can Having Children Be Immoral? 346Section 4: Genetic Testing for DiseasePredisposition 352Ruth Hubbard and R. C. Lewontin: Pitfalls ofGenetic Testing 352Robert Wachbroit: Disowning Knowledge:Issues in Genetic Testing 355DECISION SCENARIOS 359Chapter 6 REPRODUCTIVE CONTROL364SOCIAL CONTEXT: Shopping for Mr. GoodspermBRIEFING SESSION 367Techniques of Assisted Reproduction 369IVF 369GIFT, ZIFT, IVC, ULER, PZD, ICSI, DNATransfer, and CD 370Need and Success Rates 371Costs 371Drawbacks 371Potential Risk to Child 372Multiple Births 372Embryos, Eggs, and Transplants 372Gestational Surrogates and Donor Ova 374Criticisms of Assisted ReproductionPractices 375Benefits of IVF and Other Forms of AssistedReproduction 375Ethical and Social Difficulties 376Cloning and Twinning 377Artificial Insemination 378365

95028 FM 02/27/07 18:42 Page xvContentsThe Procedure 378Reasons for Seeking Artificial Insemination 379Sperm Donors 380Issues in Artificial Insemination 380Ova Donors 381Surrogate Pregnancy 381Ethical Theories and Reproductive Control 383CASE PRESENTATION: Hello, Dolly: The Advent ofReproductive Cloning 384CASE PRESENTATION: Louise Brown: The First“Test-Tube Baby” 387CASE PRESENTATION: Saviour Sibling 389CASE PRESENTATION: The McCaughey Septuplets:The Perils of Multiple Pregnancy 390SOCIAL CONTEXT: Postmenopausal Motherhood 392CASE PRESENTATION: Baby M and Mary BethWhitehead: Surrogate Pregnancy in Court 394CASE PRESENTATION: The Calvert Case: AGestational Surrogate Changes Her Mind 395READINGS 396Section 1: Assisted Reproduction 396Cynthia B. Cohen: “Give Me Children orI Shall Die!” New Reproductive Technologies andHarm to Children 396Gillian Hanscombe: The Right to LesbianParenthood 406Congregation for the Doctrine of the Faith:Instruction on Respect for Human Life in ItsOrigin and on the Dignity of Procreation 409Section 2: Saviour Siblings 414David King: Why We Should Not PermitEmbryos to Be Selected as Tissue Donors 414S. Sheldon and S. Wilkinson: Should SelectingSaviour Siblings Be Banned? 416Section 3: Surrogate Pregnancy 423Bonnie Steinbock: Surrogate Motherhood asPrenatal Adoption 423Elizabeth S. Anderson: Is Women’s Labor aCommodity? 430Section 4: Human Cloning 438Leon R. Kass: The Wisdom of Repugnance 438xvCarson Strong: The Ethics of HumanReproductive Cloning 443DECISION SCENARIOS 447PART III: RESOURCES453Chapter 7 SCARCE MEDICALRESOURCES 454CASE PRESENTATION: The Prisoner Who Neededa Heart 455BRIEFING SESSION 456Transplants, Kidneys, and Machines 457Controlling Rejection 458Allocation and Scarcity 458Seattle and Kidney Machines 459Dialysis Costs and Decisions 459Microallocation Versus Macroallocation 460Ethical Theories and the Allocation of MedicalResources 461SOCIAL CONTEXT: Acquiring and AllocatingTransplant Organs 462CASE PRESENTATION: Selection Committee forDialysis 470CASE PRESENTATION: Transplants forthe Mentally Impaired 473CASE PRESENTATION: Drug Lottery: TheBetaseron Shortage 474READINGS 475Section 1: Allocating Transplant Organs 475Jacob M. Appel: Wanted Dead or Alive? KidneyTransplantation in Inmates Awaiting Execution 475Robert M. Sade: The Prisoner Dilemma: ShouldConvicted Felons Have the Same Access to HeartTransplantation as Ordinary Citizens? 477Carl Cohen et al.: Alcoholics and LiverTransplantation 479Section 2: Acquiring Transplant Organs 483Ronald Munson: The Donor’s Right to Take aRisk 483Janet Radcliffe-Richards et al.: The Case forAllowing Kidney Sales 484

95028 FM 02/27/07 18:42 Page xvixviContentsKishore D. Phadke and Urmila Anandh,Ethics of Paid Organ Donation 487Aaron Spital and Charles A. Erin: Conscriptionof Cadaveric Organs for Transplantation: Let’s atLeast Talk About It 489Section 3: Allocation Principles 492Nicholas Rescher: The Allocation of ExoticMedical Lifesaving Therapy 492George J. Annas: The Prostitute, the Playboy,and the Poet: Rationing Schemes for OrganTransplantation 500DECISION SCENARIOS505Chapter 8 PAYING FOR HEALTH CARE509CASE PRESENTATION: Robert Ingram: Dilemma ofthe Working Poor 510BRIEFING SESSION 511Claim-Rights, Legal Rights, and StatutoryRights 512Moral Rights 512Political Rights 513Health Care as a Right 513Objections 514SOCIAL CONTEXT: American Dream, AmericanNightmare 515CASE PRESENTATION: Massachusetts Takes theLead 519CASE PRESENTATION: The Canadian System as aModel for the United States 521READINGS 525Section 1: Justice and Health Care 525Allen E. Buchanan: Is There a Right to a DecentMinimum of Health Care? 525Uwe E. Reinhardt: Wanted: A Clearly ArticulatedSocial Ethic for American Health Care 530Section 2: Medicine and the Market 533Paul Krugman: Health Economics 101 533William S. Custer et al.: Why We Should Keep theEmployment-Based Health Insurance System 534Section 3: Alternatives 536Allan B. Hubbard: The Health of a Nation 536Ezekiel Emanuel: Health Care Reform: StillPossible 538DECISION SCENARIOS 540PART IV: TERMINATIONSChapter 9 ABORTION545546CASE PRESENTATION: The Conflict Begins:Roe v. Wade 547BRIEFING SESSION 548Human Development and Abortion549The Status of the Fetus 550Pregnancy, Abortion, and the Rights of Women 551Therapeutic Abortion 552Abortion and the Law 553Ethical Theories and Abortion 553SOCIAL CONTEXT: A Statistical Profile ofAbortion in the United States 555SOCIAL CONTEXT: Plan B: Pregnancy Preventionand Politics 559SOCIAL CONTEXT: RU-486: “The Abortion Pill” 562SOCIAL CONTEXT: The “Partial-Birth Abortion”Controversy 565SOCIAL CONTEXT: Supreme Court DecisionsAfter Roe v. Wade 569CASE PRESENTATION: When Abortion Was Illegal:Mrs. Sherri Finkbine and the ThalidomideTragedy 572READINGS 573Section 1: The Status of the Fetus 573John T. Noonan Jr.: An Almost Absolute Valuein History 573Judith Jarvis Thomson: A Defense of Abortion 576Mary Anne Warren: On the Moral and LegalStatus of Abortion 586Don Marquis: Why Abortion Is Immoral 594Mark T. Brown: The Morality of Abortion andthe Deprivation of Futures 599Section 2: Feminist Perspectives 602Susan Sherwin: Abortion Through a FeministEthic Lens 602

95028 FM 02/27/07 18:42 Page xviiContentsSidney Callahan: A Case for Pro-Life Feminism 605Section 3: Late-Term Abortion 611Peter Alward: Thomson, the Right to Life, andPartial-Birth Abortion 611Paul D. Blumenthal, The Federal Ban onSo-Called “Partial-Birth Abortion”Is a DangerousIntrusion into Medical Practice 615DECISION SCENARIOS 617Chapter 10 TREATING OR TERMINATING:THE DILEMMA OF IMPAIRED INFANTS 622CASE PRESENTATION: The Agony of BenteHindriks 623BRIEFING SESSION 624Genetic and Congenital Impairments 624Specific Impairments 625Down Syndrome 625Spina Bifida 625Hydrocephaly 626Anencephaly 626Esophageal Atresia 626Duodenal Atresia 626Problems of Extreme Prematurity 626Testing for Impairments 627Amniocentesis and CVS 627Alphafetoprotein 628New Noninvasive Tests 628Ethical Theories and the Problem of BirthImpairments 628CASE PRESENTATION: Baby Owens: DownSyndrome and Duodenal Atresia 630SOCIAL CONTEXT: The Dilemma of ExtremePrematurity 631SOCIAL CONTEXT: The Baby Doe Cases 636CASE PRESENTATION: Baby K: An AnencephalicInfant and a Mother’s Request 638READINGS 639Section 1: The Status of Impaired Infants 639John A. Robertson: Examination of Argumentsin Favor of Withholding Ordinary Medical Carefrom Defective Infants 639xviiH. Tristram Engelhardt Jr.: Ethical Issues inAiding the Death of Young Children 646Robert F. Weir: Life-and-Death Decisions in theMidst of Uncertainty 651Section 2: Other Perspectives 657Michael L. Gross: Avoiding AnomalousNewborns 657Section 3: The Groningen Protocol 664James Lemuel Smith: The Groningen Protocol:The Why and the What 664Alan B. Jotkowitz and Shimon Glick: TheGroningen Protocol: Another Perspective 667DECISION SCENARIOS 669Chapter 11 EUTHANASIA ANDPHYSICIAN-ASSISTED SUICIDE675CASE PRESENTATION: Terri Schiavo 676BRIEFING SESSION 682Active and Passive Euthanasia 682Voluntary, Involuntary, and NonvoluntaryEuthanasia 682Defining “Death” 683Advance Directives 685Ethical Theories and Euthanasia 687CASE PRESENTATION: Karen Quinlan: TheDebate Begins 689CASE PRESENTATION: The Cruzan Case: TheSupreme Court Upholds The Right to Die691SOCIAL CONTEXT: Physician-Assisted Suicide inOregon 694CASE PRESENTATION: Dr. Jack Kevorkian, Activistand Convicted Felon 697CASE PRESENTATION: A Canadian Tragedy 699CASE PRESENTATION: Rip van Winkle, for a Time:Donald Herbert 700SOCIAL CONTEXT: Physician-Assisted Suicide:The Dutch Experience 701READINGS 703Section 1: The Case Against AllowingEuthanasia and Physician-AssistedSuicide 703

95028 FM 02/27/07 18:42 Page xviiixviiiContentsJ. Gay-Williams: The Wrongfulness ofEuthanasia 703Daniel Callahan: When Self-DeterminationRuns Amok 706Section 2: The Case for Allowing Euthanasiaand Physician-Assisted Suicide 711John Lachs: When Abstract MoralizingRuns Amok 711Peter Singer: Voluntary Euthanasia: AUtilitarian Perspective 715Daniel E. Lee: Physician-Assisted Suicide: AConservative Critique of Intervention 722Section 3: The Killing–Letting Die Distinction 725James Rachels: Active and Passive Euthanasia 725Winston Nesbitt: Is Killing No WorseThan Letting Die? 729Section 4: Deciding for the IncompetentSupreme Court of New Jersey: In the Matter ofKaren Quinlan, an Alleged Incompetent 733DECISION SCENARIOS 735PART V: FOUNDATIONS OF BIOETHICS:ETHICAL THEORIES, MORAL PRINCIPLES,AND MEDICAL DECISIONS 739BASIC ETHICAL THEORIES 742Utilitarianism 743The Principle of Utility 743Act and Rule Utilitarianism 744Preference Utilitarianism 748Difficulties with Utilitarianism 749Kant’s Ethics 750The Categorical Imperative 750Another Formulation 751Duty 751Kant’s Ethics in the Medical Context 752Difficulties with Kantian Ethics 754Ross’s Ethics 755Moral Properties and Rules 755Actual Duties and Prima Facie Duties 756Ross’s Ethics in the Medical Context 758Difficulties with Ross’s Moral Rules 758Rawls’s Theory of Justice 759The Original Position and the Principlesof Justice 759Rawls’s Theory of Justice in the MedicalContext 761Difficulties with Rawls’s Theory 763Natural Law Ethics and Moral Theology 764Purposes, Reasons, and the Moral Law asInterpreted by Roman Catholicism 764Applications of Roman CatholicMoral–Theological Viewpoints in the MedicalContext 766Difficulties with Natural Law Ethics andMoral Theology 768MAJOR MORAL PRINCIPLES 769The Principle of Nonmaleficence 770The Principle of Beneficence 771The Principle of Utility 773Principles of Distributive Justice 774The Principle of Equality 775The Principle of Need 775The Principle of Contribution 776The Principle of Effort 776The Principle of Autonomy 777Autonomy and Actions 778Autonomy and Options 778Autonomy and Decision Making 779Restrictions on Autonomy 780THEORIES WITHOUT PRINCIPLES 782Virtue Ethics 782The Virtues 783Virtue Ethics in the Medical Context 783Difficulties with Virtue Ethics 784Care Ethics 784Values, Not Principles 785Care Ethics in the Medical Context 786Difficulties with Care Ethics 787Feminist Ethics 788Feminist Ethics in the Medical Context 789Difficulties with Feminist Ethics 790Retrospect 790

95028 FM 02/27/07 18:42 Page xixPrefaceIn shaping the eighth edition of this book, I havetried to capture both the intellectual excitementand the great seriousness that surroundbioethics. I’ve done my best, in particular, to convey these aspects to those new to the field.By emphasizing cases and presenting relevant medical, scientific, and social information,I’ve attempted to introduce readers to the basicissues and make them active participants in theenterprise of deliberation and problem solving.I believe that everyone, whatever the level ofknowledge or intellectual sophistication, will findthis a useful and engaging book.TopicsThe topics I’ve selected are all fundamental onesin bioethics. They reflect the range and variety ofthe problems we now confront and involve ethical and social issues that have excited the mostimmediate concern. But more than this, theproblems raised are ones so profoundly seriousthat they lead people to turn hopefully to philosophical consideration in search of satisfactoryresolutions.ReadingsThe Readings present current thinking aboutthe topics and show that such considerationcan be worthwhile. All are readable andnontechnical, and many reveal bioethics at itsbest. Although philosophers are strongly represented, the authors also include jurists, scientists, clinical researchers, social critics, andpracticing physicians. The moral problems ofmedicine always have scientific, social, legal,and economic aspects, and to deal with themsensibly and thoroughly, we need the knowledge and perceptions of people from a varietyof disciplines.I have also opted for diversity in anotherway, by trying to see to it that opposing viewpoints are presented for major topics.Part of the intellectual excitement of bioethicsis generated by the searing controversies surrounding its issues, and to ignore these conflictswould be misleading. Even worse, it would denyreaders the opportunity of dealing directly withproposals and arguments incompatible with theirown views. Hence, I’ve felt an obligation to raiseissues that some would prefer to ignore and topresent proposals to resolve them that othersreject as wrong or even immoral. I hold, alongwith most reasonable people, that we must faceour problems and consider seriously all proposedsolutions. Otherwise, rational inquiry evaporatesand power and prejudice take its place.Chapter StructureEach chapter for the first four Parts of this book islike a sandwich with several layers. Each openswith a Case Presentation or Social Context,which is followed by the chapter Briefing Session,then a combination of Social Contexts and CasePresentations. The variety and number of thesevary by chapter. The Readings appear next, andafter them the Decision Scenarios.In the Case Presentations, I sketch out themost important cases in bioethics in narrativeaccounts. These are ones that have faced us withcrucial issues and shaped our thinking aboutwhat we believe is morally legitimate in variousareas of clinical practice and medical and biological research.xix

95028 FM 02/27/07 18:42 Page xxxxPrefaceSome of the people at the focus of the casesare familiar. Nearly everyone has heard of TerrySchiavo, Jesse Gelsinger, Karen Quinlan, JackKevorkian, and Dax Cowart. Their names havebeen in the headlines and on the news manytimes—some as recently as last week, othersmore than three decades ago.The Case Presentations focus on events thathave been at the center of discussion. They raiseissues that prompt us to reflect. The image ofTerri Schiavo lying in bed, her limbs sometimesmoving and her mouth occasionally forming ajerky smile, for example, makes us all think hardabout when or whether life support ought to bediscontinued and whether active euthanasia isever morally acceptable. The French womanwho received a partial face transplant makes uswonder when we are justified in using the powersof transplant medicine.Not all Case Presentations center on individuals. Some focus on defining episodes in thehistory of clinical research or social practice.These include, for example, the Tuskegee SyphilisStudy and the hardly less controversial Willowbrook Hospital Experiment. The central concernof such cases is usually with the way groups orindividuals were treated by researchers and bysociety. Or it may be the way a particular therapyhas developed and raised issues.The most important aspect of the CasePresentations, in my view, is that they remind usthat in dealing with bioethical questions we arenot engaged in some purely intellectual abstractgame. Real lives are often at stake, and real peoplemay suffer or die.In the Briefing Session in each chapter, Idiscuss some of the specific moral problems thatoccur in medical and biological practice, research,and policy making. I present, in addition, whatever factual information is needed to understandhow such problems arise. Finally, I suggest theways moral theories or principles might be usedto resolve some problems. Because virtue, care,and feminist ethics don’t involve principles, Ihaven’t tried to invoke these theories. My suggestions, in any event, are offered only as startingpoints in the search for satisfactory answers.The Social Context sections provide information relevant to understanding the currentsocial, political, or biomedical situation in whichissues are being debated. They differ from CasePresentations in offering a broader and deeperview of problems such as the funding of healthcare, dealing with the AIDS pandemic, and thesocial and legal struggles over approving Plan Bfor over-the-counter sales.If we hope to raise the level of public discussion of an issue and genuinely inform the life ofour society and move toward solving importantproblems, we must understand and consider therelevant scientific and medical facts, as well asthe social situation in which the issue arises.The ongoing debate over embryonic stemcells provides a good illustration of the importance of information. No one can make a reasoned decision about whether we should allow(or even encourage) embryonic stem cell research without knowing what embryonic stemcells are and without a sense of the therapeuticpossibilities they may offer. The debate is nottaking place in a vacuum, however. Policies andlaws have been proposed and criticized, and anyone wanting to participate in the debate needssome information about the current situation.Social Context sections, to be blunt butaccurate, offer a deep background briefing tohelp with understanding the issues that aretheir focus.The Readings make up the next layer of achapter sandwich. They provide the variety ofbasic arguments and viewpoints relevant to t

Sources: The Pernkopf Anatomy 40 SOCIAL CONTEXT: Experimental Medicine and Phase Zero Trials 41 CASE PRESENTATION: Baby Fae 43 READINGS 44 Section 1: Consent and Experimentation 44 Stephen Goldby, Saul Krugman, M. H. Pappworth, and Geoffrey Edsall: The Willowbrook Letters: Critici