This thought-provoking book thoroughly identifies and explores the legal and ethical dimensions of the new genetics and the Human Genome Project. While accepting the goals of modern genetics research, the book takes a critical approach to the Human Genome Project. More precise genetic information may result in genetic discrimination, and genetic privacy will be widely threatened in employment and insurance. The way we view disease, normalcy and our own humanness may undergo significant change as clinical medicine becomes increasingly genetics-based. We are more than our genes, but mapping them will move society into "genetics territory," and we may act as if our genes determine our destiny. This timely work brings together a group of the leading experts in genetics, medicine, history of science, health law, philosophy of science, and medical ethics to assess the current state of modern human genetics, and to determine the legal and ethical guidelines needed to prevent the misuse of human genetics. The six sections of the book, read together, map the social policy contours of modern human genetics. The first part describes the science of the Human Genome Project.
The second addresses specific social policy implications, including the relevance of the recombinant DNA history, the eugenics legacy, military applications, and issues of race and class in the context of genetic discrimination. The third part focuses on broader philosophical issues, including reductionism and determinism, the concept of disease, and using germline gene therapy to "improve" human beings. The fourth is directed at the clinical implications of the new genetics, including privacy and confidentiality, genetic screening and counselling. The fifth part focuses on the legal and ethical frontiers in genetics, especially procreative liberty, patent issues, and regulatory mechanisms. In the final part the editors set forth a prioritized social policy research agenda human gene mapping.
Preface. James Watson and Eric Juengst: Foreword. 1: George J. Annas and Sherman Elias: Overview of the major social policy issues raised by the human genome project. 2: Victor McKusick: The Human Genome Project: Plans, status and applications in biology and medicine. Social Policy Implications. 3: Judith P. Swazey: Those Who Forget Their History: Lessons from the recent past for the Human Genome quest. 4: Robert Proctor: Genomics and Eugenics: How fair is the comparison?. 5: Patricia King: The Past as Prologue: Race, class, and gene discrimination. The Human Project Initiative and the Human Condition. 6: Evelyne Shuster: Determinism and Reductionism: A greater threat because of the Human Genome project. 7: Arthur Caplan: If gene therapy is the cure, what is the disease?. 8: Sherman Elias and George J. Annas: Somatic and germline gene therapy. How Changes in Genetics Change Clinical Practice. 9: Ruth Macklin: Privacy and control of genetic information. 10: Genetic predisposition and the Human Genome Project: New quandries in clinical medicine. Raymond White: Part I:. Thomas Caskey: Part II:. 11: Carrier Screening for Cystic Fibrosis: A case study in setting standards of medical practice. 12: James Sorenson: What we still don't know about genetic screening and counseling. 13: John A. Robertson: The potential impact of the Human Genome project on procreative liberty. 14: Rebecca Eisenberg: Patent rights in the Human Genome project. 15: Thomas Murray: Speaking unsmooth things about the Human Genome project. 16: Leroy Walters: A national advisory committee on genetic testing and screening. Conclusion. 17: George J. Annas and Sherman Elias: Social policy research priorities for the Human Genome project. Glossary. Index