TABLE OF CONTENTS

PREFACE

1. INTRODUCTION

I. Challenges of the Genetic Age

II. Previews of Perplexities

          Scenario 1: Genetic Communitarianism

          Scenario 2: Personal Choice or Public Health Concern?

          Scenario 3: The Quest for the Perfect Baby

          Scenario 4: Health Care in the Age of Genetic Intervention

          Scenario 5: The Genetic Enhancement Certificate

III. The Need for Systemic Ethical Thinking

IV.Genomic Research and Genetic Intervention

          The Human Genome Project and Related Genetic Research

          Modes of Genetic Intervention

V. The Shadow of Eugenics

VI. Two Models for Genetic Intervention

          The Public Health Model

          The Personal Service Model

          A Third Approach

VII. Ethical Analysis and Ethical Theory

          Principles for Institutions

          Justice

          Preventing Harm

          Limits on the Pursuit of "Genetic Perfection"

          The Morality of Inclusion

VIII. Ethical Theory and Public Policy

IX. Science Fiction Examples, Reflective Equilibrium and the Ideological Uses of Genetic Determinism

          The Risk of Reinforcing "Gene-Mania"

          Genetic Determinist Fallacies

          Ideological Functions of Genetic Determinism

 

2. EUGENICS AND ITS SHADOW

I. The Relevance of Eugenics

          Optimism and Anxiety

          Eugenics as a Cautionary Tale

II. Eugenics: A Brief History

          Origins and Growth

          Varieties of Eugenics

          The Nazi Debacle

          Decline and Fall

III. Common Themes of Eugenicists

          Degeneration

          Heritability of Behavioral Traits

          Eugenic Ends

IV. Ethical Autopsy

          A Creature of its Time

          Why Was Eugenics Wrong? Five Theses

                   Thesis 1: Replacement, not Therapy

                   Thesis 2: Value Pluralism

                   Thesis 3: Violations of Reproductive Freedoms

                   Thesis 4: Statism

                   Thesis 5: Justice

          The Public Health and Personal Service Models

          Cost-Benefit Justifications for Genetic Intervention

V. The Social Dimension of Genetics

          Genetics Constrained by Justice

                   Reproductive Freedoms

                   Natural Inequality and Self-Respect

                   Dividing the Risk Pool

          Genetics in Pursuit of Justice

VI. Conclusion

 

3. GENES, JUSTICE, AND HUMAN NATURE

I. Distributive Justice Issues Raised by Genetic Intervention

II. Including the Distribution of Natural Assets in the Domain of Justice

          The Traditional View: Natural Inequalities Are Not a Concern of Justice

          Challenging the Traditional View

          Equality of Opportunity

          Two Variants of the Level Playing Field Conception

                   The Social Structural View of Equal Opportunity and the Right to Health Care

                   The Brute Luck View and the Scope of Intervention in the Natural Lottery

          Resource Egalitarianism and the Domain of Justice

          Individual Liberty and Genetic Intervention

          Genetic Equality?

          A "Genetic Decent Minimum"?

          Points of Convergence

III. The Colonization of the Natural by the Just

IV. Blurring the Distinction Between the Subjects and Objects of Justice

Justice, Human Nature, and the Natural Bases of Inequality

          Three Conceptions of the Relation of Human Nature to Ethics

          Genetic Causation, Freedom, and the Possibility of Morality

V. Human Nature and the Idea of Moral Progress

VI. Genetic Intervention in the Name of Justice

          Intervening to Prevent Limitations on Opportunity

          Regulating Access to Interventions to Prevent a Widening of Existing Inequalities

          Ratcheting Up the Standard for Normal Species Functioning

          Tailoring Environments to Special Genetic Needs

VII. The Obligation to Prevent Harm

VIII. Conclusions

 

4. POSITIVE AND NEGATIVE GENETIC INTERVENTIONS

I. Old Distinctions in New Clothes

          Positive and Negative Eugenic Goals for Populations

          Positive and Negative Interventions and the Health and Welfare of Individuals

          Moral Boundaries and the Positive/Negative Distinction

II. Treatment Versus Enhancement: Wide Use, Hard Cases, Strong Criticism

          Insurance Coverage and "Medical Necessity"

          Treatment/Enhancement and Moral Hazard

          Treatments and the Limits of Obligations

          Hard Cases and the Expansion of Obligations

          The Microstructure of the Normal and Moral Arbitrariness

          Two Objections to the Treatment/Enhancement Distinction

III. A Limited Defense of the Treatment/Enhancement Distinction and Its Circumscribed Use

          Treatment/Enhancement and the Obligatory/Nonobligatory Boundary

          The Primary Rationale for Medical Obligations

          Hard Cases and Expansive Views of Medical Obligations

          Three Philosophical Models of the Rleationship Between Equal Opportunity and the Goals of Health Care

                   The Normal Function Model

                   The Equal Capabilities Model

                   The Equal Opportunity for Welfare Model

          The Normal Function Model as Better Public Policy

          Is the Normal Function Model a Moral "Second-Best"?

          Is the Treatment/Enhancement Distinction a Natural Baseline?

IV. Positive Versus Negative Genetic Interventions and the Permissible/Impermissible Boundary

          A Reminder About Science Fiction

          Negative and Positive and the Permissible/Impermissible Boundary

          Treatment/Enhancement and Moral Warning Flags

 

5. REPRODUCTIVE FREEDOM AND THE PREVENTION OF HARM

I. The Wider Context: Conflicts Between Liberty and Harm Prevention

II. What Is Reproductive Freedom?

          Rights and Freedoms

          Positive and Negative Freedom

                   The Choice of Whether to Procreate, With Whom, and by What Means

                   The Choice of When to Procreate

                   The Choice of How Many Children to Have

                   The Choice of What Kind of Children to Have

                   The Choice of Whether to Have Biologically Related Children

                   The Social Conditions That Support Reproductive Choices

          Summary of the Scope of Concern

III. The Interests and Values That Determine the Moral Importance of Reproductive Freedom

          Self-Determination

          Individual Good or Well-Being

          Equality of Expectations and Opportunity

IV. Use of Genetic Information to Prevent Harm

          Distinguishing Cases

          Post-Conception Interventions to Prevent Harms Compatible with a Worthwhile Life

          Prevention of Harms Across Many Generations

          Pre- and Post-Conception Interventions to Prevent Harms Incompatible with a Worthwhile Life

                   The Subject of Harm

                   Rights and Existence

                   Public Policy and Wrongful Life Issues

          Pre-Conception Interventions to Prevent Conditions Compatible with a Worthwhile Life

                   Actual Versus Possible Persons

                   Person-Affecting Moral Principles

                   Doing Wrong Versus Wronging a Person

                   The Place of Non-Person Affecting Principles in an Overall Moral Theory

                   Wrongful Disability, Different Number Cases

                   The Nondirectiveness Norm in Genetic Counseling

V. Conclusion

 

6. WHY NOT THE BEST?

I. Having the Best Children We Can

          What Could Be More Natural Than Parents Seeking the Best?

          Environmental Versus Genetic Pursuits

II. What Is the Best and Who Decides?

          A Moral Distinction Between Actions

          Pursuing the "Best" for the Child

          Harms, Benefits, and General Purpose Means

          The Right to an Open Future

          Limits on Pursuit of the Best

          Pluralism and Liberalism

          Virtues and the "Best"

III. Constraints on Permissions Allowed Parents

          Enhancements, Coordination Problems, and Harms to Others

          Enhancements and Fairness

          Uncertainty and the Risks of Pursuing the Best

          Cloning

IV. Conclusion

 

7. GENETIC INTERVENTION AND THE MORALITY OF INCLUSION

I. Objectives

          The Morality of Inclusion

          Neglect of the Morality of Inclusion in Ethical Theory

          The Allegation That the New Genetics is Exclusionary

II. The Public Promise of the New Genetics: Better Lives for All Through Medical Genetics

III. Challenging the Rhetoric: The Radical Disabilities Rights Advocates' Complaints

IV. Sorting Out the Concerns of Disabilities Rights Advocates

          The Loss of Support Argument

          The Justice Trumps Beneficence Argument

          The Expressivist Objection

                   Preventing Disabilities Without Terminating the Lives of Individuals with Disabilities

                   Genetic Intervention and the Status of Fetuses

                   Devaluing Disabilities, Not People With Disabilities

                   Summary of Response to Expressivist Argument

          The Deaf Culture Argument

V. The Social Construction of Disability and the Morality of Inclusion

          Distinguishing Disabilities from Impairments

          Options for Eliminating Disabilities

VI. Choosing a Dominant Cooperative Framework

          The Concept of a Dominant Cooperative Framework

          Why the Choice is a Matter of Justice

                   Overlooking a Basic Problem of Justice

                   Justice as Self-Interested Reciprocity Versus Subject-Centered Justice

          How Genetic Interventions Might Affect the Character of the Dominant Cooperative Scheme

VII. Knowledge of Genetic Differences and the Morality of Inclusion

VIII. Conclusion

 

8. POLICY IMPLICATIONS

I. Where Does the Shadow of Eugenics Fall?

          The Inevitable Comparison

          Public Concern About Genetic Research

          Beyond Rules of Thumb

II. Distributive Justice

          The Right to Health Care

                   Access to Health Care: Equal Opportunity as Entitlement and Limitation

                   Including Genetic Services in the Right to Health Care

                   Limits on the Entitlement to Genetic Services

          Additional Arguments for Access to Genetic Interventions

III. Securing Equality

          If People Are not Equal Should We Treat Them So? Should We Make Them So?

                   Will the Human Genomic Research Push Society to the Right?

                   Must Everyone Have Access to Enhancements?

          Enhancements Versus Treatments

IV. Families

          Reproductive Freedom and Coercive Eugenics

          Restrictions on Parental Choice

V. Citizenship and Inclusion

          A Ghetto Walled by Data

          Devaluing the Less Than Perfect

          Reducing the Risk of Exclusion

VI. State, Society, Individual, and Markets

          The Threat of the Eugenic State

          Eugenics as a Moral Obligation?

          Eugenic Public Policy?

          Utopian Eugenics?

          Markets and Individual Liberty

          Commerical Genetics

          Liberal Neutrality and Democratic Decisionmaking

          The Permissibility of Rights-Respecting Genetic Perfectionist Policies

 

APPENDIX ONE: THE MEANING OF GENETIC CAUSATION, by Elliott Sober

I. Three Modes of Intervention

II. Four Key Questions

          Question (1): Do genes causally contribute to the trait?

          Question (2): How much do genes, as opposed to environment, contribute to the trait?

          Question (3): Which genes contribute to the trait?

          Question (4): How do these genes contribute to the trait?

III. Conclusion

 

APPENDIX TWO: METHODOLOGY

I. The Method of Reflective Equilibrium

          The Charge of Parochialism

          The Communitarian Challenge

II. The Limits of "Principalism"      

III. A Liberal Framework

          Negative and Positive Rights: Freedom and Well-being

          Justifying the Liberal Framework

 

REFERENCES