From Chance to Choice: Genetics and Justice

by Allen Buchanan , Dan W. Brock , Norman Daniels , Daniel Wikler

• ISBN13: 9780521669771
• ISBN10: 0521669774
• Format: Paperback
• Copyright: 2001-11-12
• Publisher: Cambridge University Press

Summary

This book, written by four internationally renowned bioethicists, is the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science.

Author Biography

Allen Buchanan is Professor of Philosophy at the University of Arizona Dan W. Brock is Professor of Philosophy at Brown University Norman Daniels is Goldthwaite Professor of Philosophy at Tufts University, and Professor of Medical Ethics at Tufts Medical School Daniel Wikler is Senior Professor in Medical Ethics and in the Department of Philosophy at the University of Wisconsin, Madison. In 1999 he was appointed Staff Ethicist for the World Health Organization

Table of Contents

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