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From Chance to Choice Genetics and Justice

ISBN-10: 0521669774
ISBN-13: 9780521669771
Edition: 2001
List price: $57.00 Buy it from $39.36
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Description: 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  More...

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Book details

List price: $57.00
Copyright year: 2001
Publisher: Cambridge University Press
Publication date: 11/12/2001
Binding: Paperback
Pages: 414
Size: 6.00" wide x 8.75" long x 0.75" tall
Weight: 1.232

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.

Preface
Introduction
Challenges of the Genetic Age
Previews of Perplexities
Genetic Communitarianism
Personal Choice or Public Health Concern?
The Quest for the Perfect Baby
Health Care in the Age of Genetic Intervention
The Genetic Enhancement Certificate
The Need for Systematic Ethical Thinking
Genomic Research and Genetic Intervention
The Human Genome Project and Related Genetic Research
Modes of Genetic Intervention
The Shadow of Eugenics
Two Models for Genetic Intervention
The Public Health Model
The Personal Service Model
A Third Approach
Ethical Analysis and Ethical Theory
Principles for Institutions
Justice
Preventing Harm
Limits on the Pursuit of "Genetic Perfection"
The Morality of Inclusion
Ethical Theory and Public Policy
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
Eugenics and its Shadow
The Relevance of Eugenics
Optimism and Anxiety
Eugenics as a Cautionary Tale
Eugenics: A Brief History
Origins and Growth
Varieties of Eugenics
The Nazi Debacle
Decline and Fall
Common Themes of Eugenicists
Degeneration
Heritability of Behavioral Traits
Eugenic Ends
Ethical Autopsy
A Creature of Its Time
Why Was Eugenics Wrong? Five Theses
The Public Health and Personal Service Models
Cost-Benefit Justifications for Genetic Intervention
The Social Dimension of Genetics
Genetics Constrained by Justice
Genetics in Pursuit of Justice
Conclusion
Genes, Justice, and Human Nature
Distributive Justice Issues Raised by Genetic Intervention
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
Resource Egalitarianism and the Domain of Justice
Individual Liberty and Genetic Intervention
Genetic Equality?
A "Genetic Decent Minimum"?
Points of Convergence
The Colonization of the Natural by the Just
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
Human Nature and the Idea of Moral Progress
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
The Obligation to Prevent Harm
Conclusions
Positive and Negative Genetic Interventions
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
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 Expansion of Obligations
The Microstructure of the Normal and Moral Arbitrariness
Two Objections to the Treatment/Enhancement Distinction
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 Relationship Between Equal Opportunity and the Goals of Health Care
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?
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
Why Not the Best?
Having the Best Children We Can
What Could Be More Natural Than Parents Seeking the Best?
Environmental Versus Genetic Pursuits
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
Constraints on Permissions Allowed Parents
Enhancements, Coordination Problems, and Harms to Others
Enhancements and Fairness
Uncertainty and the Risks of Pursuing the Best
Cloning
Conclusion
Reproductive Freedom and the Prevention of Harm
The Wider Context: Conflicts Between Liberty and Harm Prevention
What Is Reproductive Freedom?
Rights and Freedoms
Positive and Negative Freedom
Summary of the Scope of Concern
The Interests and Values That Determine the Moral Importance of Reproductive Freedom
Self-Determination
Individual Good or Well-Being
Equality of Expectations and Opportunity
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
Pre-Conception Interventions to Prevent Conditions Compatible with a Worthwhile Life
Conclusion
Genetic Intervention and the Morality of Inclusion
Objectives
The Morality of Inclusion
Neglect of the Morality of Inclusion in Ethical Theory
The Allegation That the New Genetics is Exclusionary
The Public Promise of the New Genetics: Better Lives for All Through Medical Genetics
Challenging the Rhetoric: The Radical Disabilities Rights Advocates' Complaints
Sorting Out the Concerns of Disabilities Rights Advocates
The Loss of Support Argument
The Justice Trumps Beneficence Argument
The Expressivist Objection
The Deaf Culture Argument
The Social Construction of Disability and the Morality of Inclusion
Distinguishing Disabilities from Impairments
Options for Eliminating Disabilities
Choosing a Dominant Cooperative Framework
The Concept of a Dominant Cooperative Framework
Why the Choice Is a Matter of Justice
How Genetic Interventions Might Affect the Character of the Dominant Cooperative Scheme
Knowledge of Genetic Differences and the Morality of Inclusion
Conclusion
Policy Implications
Where Does the Shadow of Eugenics Fall?
The Inevitable Comparison
Public Concern about Genetic Research
Beyond Rules of Thumb
Distributive Justice
The Right to Health Care
Additional Arguments for Access to Genetic Interventions
Securing Equality
If People Are Not Equal Should We Treat Them So? Should We Make Them So?
Will Human Genomic Research Push Society to the Right?
Must Everyone Have Access to Enhancements?
Enhancements versus Treatments
Families
Reproductive Freedom and Coercive Eugenics
Restrictions on Parental Choice
Citizenship and Inclusion
A Ghetto Walled by Data
Devaluing the Less Than Perfect
Reducing the Risk of Exclusion
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
Commercial Genetics
Liberal Neutrality and Democratic Decisionmaking
The Permissibility of Rights-Respecting Genetic Perfectionist Policies
The Meaning of Genetic Causation
Three Modes of Intervention
Four Key Questions
Do Genes Causally Contribute to the Trait?
How Much Do Genes, as Opposed to Environment, Contribute to the Trait?
Which Genes Contribute to the Trait?
How Do These Genes Contribute to the Trait?
Conclusion
Acknowledgments
Methodology
The Method of Reflective Equilibrium
The Charge of Parochialism
The Communitarian Challenge
The Limits of "Principlism"
A Liberal Framework
Negative and Positive Rights: Freedom and Well-Being
Justifying the Liberal Framework
References
Index

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