Justice and the Human Genome ProjectThe Human Genome Project is an expensive, ambitious, and controversial attempt to locate and map every one of the approximately 100,000 genes in the human body. If it works, and we are able, for instance, to identify markers for genetic diseases long before they develop, who will have the right to obtain such information? What will be the consequences for health care, health insurance, employability, and research priorities? And, more broadly, how will attitudes toward human differences be affected, morally and socially, by the setting of a genetic "standard"? The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a "just genetics." Beginning with an account of the utopian dreams and authoritarian tendencies of historical eugenics movements, this book's nine essays probe the potential social uses and abuses of detailed genetic information. Lucid and wide-ranging, these contributions will provoke discussion among bioethicists, legal scholars, and policy makers. The Human Genome Project is an expensive, ambitious, and controversial attempt to locate and map every one of the approximately 100,000 genes in the human body. If it works, and we are able, for instance, to identify markers for genetic diseases long before they develop, who will have the right to obtain such information? What will be the consequences for health care, health insurance, employability, and research priorities? And, more broadly, how will attitudes toward human differences be affected, morally and socially, by the setting of a genetic "standard"? The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a "just genetics." Beginning with an account of the utopian dreams and authoritarian tendencies of historical eugenics movements, this book's nine essays probe the potential social uses and abuses of detailed genetic information. Lucid and wide-ranging, these contributions will provoke discussion among bioethicists, legal scholars, and policy makers. |
Contents
Race Class and Genetics | 30 |
Protecting Privacy | 75 |
Use of Genetic Information by Private Insurers | 91 |
The Genome Project Individual Differences | 110 |
A Problem Agenda | 133 |
Justice and the Limitations of Genetic Knowledge | 153 |
Notes on Contributors | 169 |
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abortion actuarial fairness adverse selection American applicants benefits biological blood choices claim Code costs coverage Daniels decisions deleterious genes differences discrimination disease and disability distribution DNA bank DNA samples effect embryo emerging genetic technologies equality of opportunity ethical eugenics example fetus future gene banks gene therapy genetic disease genetic disorders genetic engineering genetic enhancement genetic information genetic justice genetic screening genetic testing genomic research genotypes groups health insurance heart disease high risk human genome project Huntington's disease identify individual issues Journal Lappé large number mandatory medical records Medicine ment moral natural lottery Nazi netic newborn screening nome project parents person possible potential Predictive Medicine premium private insurance problems prohibit questions race racial Racial Hygiene Rawls reasons reproductive require result risk classification sickle cell social policy society Stat statutes sterilization Supp tion traits treat treatment U.S. Supreme Court York