TABLE OF CONTENTS
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
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
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
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
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