9780521669771

From Chance to Choice: Genetics and Justice

by
  • ISBN13:

    9780521669771

  • ISBN10:

    0521669774

  • Format: Paperback
  • Copyright: 2001-11-12
  • Publisher: Cambridge University Press

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Supplemental Materials

What is included with this book?

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

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