From Chance to Choice : Genetics and Justice

Preface xiii Introduction 1(26) Challenges of the Genetic Age 1(1) Previews of Perplexities 1(3) Scenario 1: Genetic Communitarianism 2(1) Scenario 2: Personal Choice or Public Health Concern? 2(1) Scenario 3: The Quest for the Perfect Baby 2(1) Scenario 4: Health Care in the Age of Genetic Intervention 3(1) Scenario 5: The Genetic Enhancement Certificate 3(1) The Need for Systematic Ethical Thinking 4(1) Genomic Research and Genetic Intervention 5(4) The Human Genome Project and Related Genetic Research 5(1) Modes of Genetic Intervention 6(3) The Shadow of Eugenics 9(2) Two Models for Genetic Intervention 11(3) The Public Health Model 11(1) The Personal Service Model 12(1) A Third Approach 13(1) Ethical Analysis and Ethical Theory 14(7) Principles for Institutions 15(1) Justice 15(3) Preventing Harm 18(1) Limits on the Pursuit of ``Genetic Perfection'' 19(1) The Morality of Inclusion 20(1) Ethical Theory and Public Policy 21(1) Science Fiction Examples, Reflective Equilibrium and the Ideological Uses of Genetic Determinism 22(5) The Risk of Reinforcing ``Gene-Mania'' 23(1) Genetic Determinist Fallacies 24(1) Ideological Functions of Genetic Determinism 24(3) Eugenics and Its Shadow 27(34) The Relevance of Eugenics 27(3) Optimism and Anxiety 27(1) Eugenics as a Cautionary Tale 28(2) Eugenics: A Brief History 30(10) Origins and Growth 30(2) Varieties of Eugenics 32(5) The Nazi Debacle 37(1) Decline and Fall 38(2) Common Themes of Eugenicists 40(2) Degeneration 40(1) Heritability of Behavioral Traits 41(1) Eugenic Ends 42(1) Ethical Autopsy 42(13) A Creature of Its Time 43(3) Why Was Eugenics Wrong? Five Theses 46(7) The Public Health and Personal Service Models 53(1) Cost-Benefit Justifications for Genetic Intervention 54(1) The Social Dimension of Genetics 55(5) Genetics Constrained by Justice 57(2) Genetics in Pursuit of Justice 59(1) Conclusion 60(1) Genes, Justice, and Human Nature 61(43) Distributive Justice Issues Raised by Genetic Intervention 61(2) Including the Distribution of Natural Assets in the Domain of Justice 63(19) The Traditional View: Natural Inequalities Are Not a Concern of Justice 63(1) Challenging the Traditional View 64(1) Equality of Opportunity 65(1) Two Variants of the Level Playing Field Conception 66(10) Resource Egalitarianism and the Domain of Justice 76(1) Individual Liberty and Genetic Intervention 77(2) Genetic Equality? 79(2) A ``Genetic Decent Minimum''? 81(1) Points of Convergence 82(1) The Colonization of the Natural by the Just 82(2) Blurring the Distinction Between the Subjects and Objects of Justice 84(2) Justice, Human Nature, and the Natural Bases of Inequality 86(8) Three Conceptions of the Relation of Human Nature to Ethics 88(2) Genetic Causation, Freedom, and the Possibility of Morality 90(4) Human Nature and the Idea of Moral Progress 94(1) Genetic Intervention in the Name of Justice 95(4) Intervening to Prevent Limitations on Opportunity 95(1) Regulating Access to Interventions to Prevent a Widening of Existing Inequalities 96(2) Ratcheting Up the Standard for Normal Species Functioning 98(1) Tailoring Environments to Special Genetic Needs 99(1) The Obligation to Prevent Harm 99(1) Conclusions 100(4) Positive and Negative Genetic Interventions 104(52) Old Distinctions in New Clothes 104(6) Positive and Negative Eugenic Goals for Populations 104(1) Positive and Negative Interventions and the Health and Welfare of Individuals 105(2) Moral Boundaries and the Positive/Negative Distinction 107(3) Treatment Versus Enhancement: Wide Use, Hard Cases, Strong Criticism 110(9) Insurance Coverage and ``Medical Necessity'' 110(2) Treatment/Enhancement and Moral Hazard 112(1) Treatments and the Limits of Obligations 113(2) Hard Cases and Expansion of Obligations 115(1) The Microstructure of the Normal and Moral Arbitrariness 116(2) Two Objections to the Treatment/Enhancement Distinction 118(1) A Limited Defense of the Treatment/Enhancement Distinction and Its Circumscribed Use 119(33) Treatment/Enhancement and the Obligatory/Nonobligatory Boundary 119(2) The Primary Rationale for Medical Obligations 121(3) Hard Cases and Expansive Views of Medical Obligations 124(2) Three Philosophical Models of the Relationship Between Equal Opportunity and the Goals of Health Care 126(15) The Normal Function Model as Better Public Policy 141(3) Is the Normal Function Model a Moral ``Second-Best''? 144(5) Is the Treatment/Enhancement Distinction a Natural Baseline? 149(3) Positive Versus Negative Genetic Interventions and the Permissible/Impermissible Boundary 152(4) A Reminder about Science Fiction 152(1) Negative and Positive and the Permissible/Impermissible Boundary 153(1) Treatment/Enhancement and Moral Warning Flags 154(2) Why Not The Best? 156(48) Having the Best Children We Can 156(5) What Could Be More Natural Than Parents Seeking the Best? 156(3) Environmental Versus Genetic Pursuits 159(2) What Is the Best and Who Decides? 161(20) A Moral Distinction Between Actions 161(3) Pursuing the Best for the Child 164(3) Harms, Benefits, and General-Purpose Means 167(3) The Right to an Open Future 170(2) Limits on Pursuit of the Best 172(4) Pluralism and Liberalism 176(3) Virtues and the Best 179(2) Constraints on Permissions Allowed Parents 181(21) Enhancements, Coordination Problems, and Harms to Others 182(5) Enhancements and Fairness 187(4) Uncertainty and the Risks of Pursuing the Best 191(5) Cloning 196(6) Conclusion 202(2) Reproductive Freedom And The Prevention Of Harm 204(54) The Wider Context: Conflicts Between Liberty and Harm Prevention 204(2) What Is Reproductive Freedom? 206(8) Rights and Freedoms 206(1) Positive and Negative Freedom 207(6) Summary of the Scope of Concern 213(1) The Interests and Values That Determine the Moral Importance of Reproductive Freedom 214(8) Self-Determination 214(5) Individual Good or Well-Being 219(1) Equality of Expectations and Opportunity 220(2) Use of Genetic Information to Prevent Harm 222(34) Distinguishing Cases 223(3) Post-Conception Interventions to Prevent Harms Compatible with a Worthwhile Life 226(4) Prevention of Harms across Many Generations 230(2) Pre- and Post-Conception Interventions to Prevent Harms Incompatible with a Worthwhile Life 232(10) Pre-Conception Interventions to Prevent Conditions Compatible with a Worthwhile Life 242(14) Conclusion 256(2) Genetic Intervention And The Morality Of Inclusion 258(46) Objectives 258(5) The Morality of Inclusion 258(2) Neglect of the Morality of Inclusion in Ethical Theory 260(1) The Allegation That the New Genetics is Exclusionary 261(2) The Public Promise of the New Genetics: Better Lives for All Through Medical Genetics 263(1) Challenging the Rhetoric: The Radical Disabilities Rights Advocates' Complaints 264(2) Sorting Out the Concerns of Disabilities Rights Advocates 266(18) The Loss of Support Argument 266(4) The Justice Trumps Beneficence Argument 270(2) The Expressivist Objection 272(9) The Deaf Culture Argument 281(3) The Social Construction of Disability and the Morality of Inclusion 284(4) Distinguishing Disabilities from Impairments 285(3) Options for Eliminating Disabilities 288(1) Choosing a Dominant Cooperative Framework 288(10) The Concept of a Dominant Cooperative Framework 288(3) Why the Choice Is a Matter of Justice 291(5) How Genetic Interventions Might Affect the Character of the Dominant Cooperative Scheme 296(2) Knowledge of Genetic Differences and the Morality of Inclusion 298(4) Conclusion 302(2) Policy Implications 304(43) Where Does the Shadow of Eugenics Fall? 306(3) The Inevitable Comparison 306(1) Public Concern about Genetic Research 306(1) Beyond Rules of Thumb 307(2) Distributive Justice 309(6) The Right to Health Care 309(5) Additional Arguments for Access to Genetic Interventions 314(1) Securing Equality 315(6) If People Are Not Equal Should We Treat Them So? Should We Make Them So? 315(2) Will Human Genomic Research Push Society to the Right? 317(1) Must Everyone Have Access to Enhancements? 318(3) Enhancements versus Treatments 321(1) Families 321(4) Reproductive Freedom and Coercive Eugenics 322(2) Restrictions on Parental Choice 324(1) Citizenship and Inclusion 325(8) A Ghetto Walled by Data 326(1) Devaluing the Less Than Perfect 327(2) Reducing the Risk of Exclusion 329(4) State, Society, Individual, and Markets 333(14) The Threat of the Eugenic State 333(1) Eugenics as a Moral Obligation? 333(3) Eugenic Public Policy? 336(1) Utopian Eugenics? 337(2) Markets and Individual Liberty 339(2) Commercial Genetics 341(2) Liberal Neutrality and Democratic Decisionmaking 343(2) The Permissibility of Rights-Respecting Genetic Perfectionist Policies 345(2) APPENDIX ONE THE MEANING OF GENETIC CAUSATION 347(24) Three Modes of Intervention 349(4) Four Key Questions 353(16) Question 1: Do Genes Causally Contribute to the Trait? 355(1) Question 2: How Much Do Genes, as Opposed to Environment, Contribute to the Trait? 356(8) Question 3: Which Genes Contribute to the Trait? 364(3) Question 4: How Do These Genes Contribute to the Trait? 367(2) Conclusion 369(1) Acknowledgments 370(1) APPENDIX TWO METHODOLOGY 371(12) The Method of Reflective Equilibrium 371(4) The Charge of Parochialism 371(2) The Communitarian Challenge 373(2) The Limits of ``Principlism'' 375(3) A Liberal Framework 378(2) Negative and Positive Rights: Freedom and Well-Being 380(2) Justifying the Liberal Framework 382(1) References 383(12) Index 395