Buchanan, Allen et al. From chance to choice: genetics and justice. New York, USA : Cambridge University Press, 2000. 398p. ISBN 0 521 669774   QH431 B918f  2000

CONTENTS

Preface - XIII

CHAPTER ONE - INTRODUCTION - 1

CHALLENGES OF THE GENETIC AGE - 1
PREVIEWS OF PERPLEXITIES - 1
Scenário I: Genetic Communitarianism - 2
Scenário 2: Personal Choice or Public Health Concern? - 2
Scenário 3: The Quest for the Perfect Baby - 2
Scenário 4: Health Care in the Age of Genetic Intervention - 3
Scenário 5: The Genetic Enhancement Certificate - 3
THE NEED FOR SYSTEMATIC ETHICAL THINKING - 4
GENOMIC RESEARCH AND GENETIC INTERVENTION - 5
The Human Genome Project and Related Genetic Research - 5
Modes of Genetic Intervention - 6
THE SHADOW OF EUGENICS - 9
TWO MODELS FOR GENETIC INTERVENTION - 11
The Public Health Model - 11
The Personal Service Model - 12 
A Third Approach - 13
ETHICAL ANALYSIS AND ETHICAL THEORY - 14
Principles for Institutions - 15
Justice - 15
Preventing Harm - 18
Limits on the Pursuit of "Genetic Perfection" - 19
The Morality of Inclusion - 20
ETHICAL THEORY AND PUBLIC POLICY - 21
SCIENCE FICTION EXAMPLES, REFLECTIVE EQUILIBRIUM AND THE IDEOLOGICAL USES OF GENETIC DETERMINISM - 22
The Risk of Reinforcing "Gene-Mania" - 23
Genetic Determinist Fallacies - 24
Ideological Functions of Genetic Determinism - 24

CHAPTER TWO - EUGENICS AND ITS SHADOW - 27

THE RELEVANCE OF EUGENICS - 27
Optimism and Anxiety - 27
Eugenics as a Cautionary Tale - 28
EUGENICS: A BRIEF HISTORY - 30
Origins and Growth - 30
Varieties of Eugenics - 32
The Nazi Debacle - 37
Decline and Fall - 38
COMMON THEMES OF EUGENICISTS - 40
Degeneration - 40
Heritability of Behavioral Traits - 41
Eugenic Ends - 42
ETHICAL AUTOPSY - 42
A Creature of Its Time - 43
Why Was Eugenics Wrong? Five Theses - 46
The Public Health and Personal Service Models - 53
Cost-Benefit justifications for Genetic Intervention - 54
THE SOCIAL DIMENSION OF GENETICS - 55
Genetics Constrained by Justice - 57
Genetics in Pursuit of justice - 59
CONCLUSION - 60

CHAPTER THREE - GENES, JUSTICE, AND HUMAN NATURE - 61

DISTRIBUTIVE JUSTICE ISSUES RAISED BY GENETIC INTERVENTION - 61
INCLUDING THE DISTRIBUTION OF NATURAL ASSETS IN THE DOMAIN OF JUSTICE - 63
The Traditional View: Natural Inequalities Are Not a Concern of Justice - 63
Challenging the Traditional View - 64
Equality of Opportunity - 65
Two Variants of the Level Playing Field Conception - 66
Resource Egalitarianism and the Domain of Justice - 76
Individual Liberty and Genetic Intervention - 77
Genetic Equality? - 79
A "Genetic Decent Minimum"? - 81
Points of Convergence - 82
THE COLONIZATION OF THE NATURAL BY THE JUST - 82
BLURRING THE DISTINCTION BETWEEN THE SUBJECTS AND OBJECTS OF JUSTICE - 84
JUSTICE, HUMAN NATURE, AND THE NATURAL BASES OF INEQUALITY - 86
Three Conceptions of the Relation of Human Nature to Ethics - 88
Genetic Causation, Freedom, and the Possibility of Morality - 90
HUMAN NATURE AND THE IDEA OF MORAL PROGRESS - 94
GENETIC INTERVENTION IN THE NAME OF JUSTICE - 95
Intervening to Prevent Limitations on Opportunity - 95
Regulating Access to Interventions to Prevent a Widening of Existing Inequalities - 96
Ratcheting Up the Standard for Normal Species Functioning - 98
Tailoring Environments to Special Genetic Needs - 99
THE OBLIGATION TO PREVENT HARM - 99
CONCLUSIONS - 100

CHAPTER FOUR - POSITIVE AND NEGATIVE GENETIC INTERVENTIONS - 104

OLD DISTINCTIONS IN NEW CLOTHES - 104
Positive and Negative Eugenic Goals for Populations - 104
Positive and Negative Interventions and the Health and  Welfare of Individuals - 105
Moral Boundaries and the Positive/Negative Distinction - 107
TREATMENT VERSUS ENHANCEMENT: WIDE USE, HARD CASES, STRONG CRITICISM - 110
Insurance Coverage and "Medical Necessity" - 110
Treatment/Enhancement and Moral Hazard - 112
Treatments and the Limits of Obligations - 113
Hard Cases and Expansion of Obligations - 115
The Microstructure of the Normal and Moral Arbitrariness - 116
Two Objections to the Treatment/ Enhancement Distinction - 118
A LIMITED DEFENSE OF THE TREATMENT/ENHANCEMENT DISTINCTION AND ITS CIRCUMSCRIBED USE - 119
Treatment/Enhancement and the Obligatory/Nonobligatory Boundary - 119
The Primary Rationale for Medical Obligations - 121
Hard Cases and Expansive Views of Medical Obligations - 124
Three Philosophical Models of the Relationship Between Equal Opportunity and the Goals of Health Care - 126
The Normal Function Model as Better Public Policy - 141
Is the Normal Function Model a Moral "Second-Best"? - 144
Is the Treatment/Enhancement Distinction a Natural Baseline? - 149
POSITIVE VERSUS NEGATIVE GENETIC INTERVENTIONS AND THE PERMISSIBLE/IMPERMISSIBLE BOUNDARY - 152
A Reminder about Science Fiction - 152
Negative and Positive and the Permissible/Impermissible Boundary - 153
Treatment/Enhancement and Moral Warning Flags - 154

CHAPTER FIVE - WHY NOT THE BEST? - 156

HAVING THE BEST CHILDREN WE CAN - 156
What Could Be More Natural Than Parents Seeking the Best? - 156
Environmental Versus Genetic Pursuits - 159
WHAT IS THE BEST AND WHO DECIDES? - 161
A Moral Distinction Between Actions - 161
Pursuing the Best for the Child - 164
Harms, Benefits, and General-Purpose Means - 167
The Right to an Open Future - 170
Limits on Pursuit of the Best - 172
Pluralism and Liberalism - 176
Virtues and the Best - 179
CONSTRAINTS ON PERMISSIONS ALLOWED PARENTS - 181
Enhancements, Coordination Problems, and Harms to Others - 182
Enhancements and Fairness - 187
Uncertainty and the Risks of Pursuing the Best Cloning - 196
CONCLUSION - 202

CHAPTER SIX - REPRODUCTIVE FREEDOM AND THE PREVENTION OF HARM - 204

THE WIDER CONTEXT: CONFLICTS BETWEEN LIBERTY AND HARM PREVENTION - 204
WHAT IS REPRODUCTIVE FREEDOM? - 206
Rights and Freedoms - 206
Positive and Negative Freedom - 207
Summary of the Scope of Concern - 213
THE INTERESTS AND VALUES THAT DETERMINE THE MORAL IMPORTANCE OF REPRODUCTIVE FREEDOM - 214
Self-Determination - 214
Individual Good or Well-Being - 219
Equality of Expectations and Opportunity - 220
USE OF GENETIC INFORMATION TO PREVENT HARM - 222
Distinguishing Cases - 223
Post-Conception Interventions to Prevent Harms Compatible with a Worthwhile Life - 226
Prevention of Harms across Many Generations - 230
Pre- and Post-Conception Interventions to Prevent Harms Incompatible with a Worthwhile Life - 232
Pre-Conception Interventions to Prevent Conditions Compatible with a Worthwhile Life - 242
CONCLUSION - 256

CHAPTER SEVEN - GENETIC INTERVENTION AND THE MORALITY OF INCLUSION - 258

OBJECTIVES - 258
The Morality of Inclusion - 258
Neglect of the Morality of Inclusion in Ethical Theory - 260
The Allegation That the New Genetics is Exclusionary - 261
THE PUBLIC PROMISE OF THE NEW GENETICS: BETTER LIVES FOR ALL THROUGH MEDICAL GENETICS - 263
CHALLENGING THE RHETORIC: THE RADICAL DISABILITIES RIGHTS ADVOCATES' COMPLAINTS - 264
SORTING OUT THE CONCERNS OF DISABILITIES RIGHTS ADVOCATES - 266
The Loss of Support Argument - 266
The justice Trumps Beneficence Argument - 270
The Expressivist Objection - 272
The Deaf Culture Argument - 281
THE SOCIAL CONSTRUCTION OF DISABILITY AND THE MORALITY OF INCLUSION - 284
Distinguishing Disabilities from Impairments - 285
Options for Eliminating Disabilities - 288
CHOOSING A DOMINANT COOPERATIVE FRAMEWORK - 288
The Concept of a Dominant Cooperative Framework - 288
Why the Choice Is a Matter of Justice - 291
How Genetic Interventions Might Affect the Character of the Dominant Cooperative Scheme - 296
KNOWLEDGE OF GENETIC DIFFERENCES AND THE MORALITY OF INCLUSION - 298
CONCLUSION - 302

CHAPTER EIGHT - POLICY IMPLICATIONS - 304

WHERE DOES THE SHADOW OF EUGENICS FALL? - 306
The Inevitable Comparison - 306
Public Concern about Genetic Research - 306
Beyond Rules of Thumb - 307
DISTRIBUTIVE JUSTICE - 309
The Right to Health Care - 309
Additional Arguments for Access to Genetic Interventions - 314
SECURING EQUALITY - 315
If People Are Not Equal Should We Treat Them So? Should We Make Them So? - 315
Will Human Genomic Research Push Society to the Right? - 317
Must Everyone Have Access to Enhancements? - 318
Enhancements versus Treatments - 321
FAMILIES - 321
Reproductive Freedom and Coercive Eugenics - 322
Restrictions on Parental Choice - 324
CITIZENSHIP AND INCLUSION - 325
A Ghetto Walled by Data - 326
Devaluing the Less Than Perfect - 327
Reducing the Risk of Exclusion - 329
STATE, SOCIETY, INDIVIDUAL, AND MARKETS - 333
The Threat of the Eugenic State - 333
Eugenics as a Moral Obligation? - 333
Eugenic Public Policy? - 336
Utopian Eugenics? - 337
Markets and Individual Liberty - 339
Commercial Genetics - 341
Liberal Neutrality and Democratic Decisionmaking - 343
The Permissibility of Rights-Respecting Genetic Perfectionist Policies - 345

APPENDIX ONE - THE MEANING OF GENETIC CAUSATION - 347

THREE MODES OF INTERVENTION - 349
FOUR KEY QUESTIONS - 353
Question 1: Do Genes Causally Contribute to the Trait? - 355
Question 2: How Much Do Genes, as Opposed to Environment, Contribute to the Trait? - 356
Question 3: Which Genes Contribute to the Trait? - 364
Question 4: How Do These Genes Contribute to the Trait? - 367
CONCLUSION - 369
ACKNOWLEDGMENTS - 370
APPENDIX TWO - METHODOLOGY - 371
THE METHOD OF REFLECTIVE EQUILIBRIUM - 371
The Charge of Parochialism - 371
The Communitarian Challenge - 373
THE LIMITS OF "PRINCIPLISM" - 375
A LIBERAL FRAMEWORK - 378
NEGATIVE AND POSITIVE RIGHTS: FREEDOM AND WELL-BEING - 380
JUSTIFYING THE LIBERAL FRAMEWORK - 382

REFERENCES - 383
INDEX - 395