Gene Mapping; Using Law and Ethics As Guides

This pathfinding 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 will likely result in genetic discrimination, and will threaten genetic privacy in employment and insurance. The way we view disease, normalcy and our own humanness will 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 nation's 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 begin to chart the legal and ethical guidelines needed to prevent the misuse of human genetics from leading to the abuse of human beings. 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. Broader philosophical issues, including reductionism and determinism, the concept of disease, and using germline gene therapy to "improve" human beings are discussed in the third part. The fourth is directed at the clinical implications of the new genetics, including privacy and confidentiality, genetic screening and counseling. The fifth part focuses on the legal and ethical frontiers in genetics, especially procreative liberty, patent issues, and regulatory mechanisms. Finally, a prioritized social policy research agenda is presented which suggests that immediate emphasis be on: 1) determining the rules for introducing a new genetic test into medical practice; 2) protecting the confidentiality and privacy of an individual's genetic formation; 3) preventing employment and insurance discrimination based on genetics; and 4) exploring how the new genetics will affect our concepts of "disease", "normalcy," and "humanness."

George J. Annas, Edward R. Utley Professor of Health Law, Boston University. Sherman Elias, Professor of Obstetrics and Gynecology, University of Tennessee.