HUMAN GENOME PROJECT--SCIENCE, LAW, AND SOCIAL CHANGE

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DESCRIPTION: During the l990s, it has become evident that advances in the biomedical sciences, especially in human genomics, will dramatically influence law, medicine, public health, and many other sectors of our society. The proposed conference, The Human Genome Project: Science, Law, and Social Change in the 21st Century, will bring together 300-500 physicians, lawyers, consumers, ethicists, and scientists to explore the impact of new genetic technologies and prepare for the challenges ahead. Organized by the Whitehead Institute for Biomedical Research, in association with the American Society of Law, Medicine & Ethics (ASLME), the conference on April 23 and 24, 1998, will offer plenary sessions on (1) The Information Revolution in Genetics; (2) Privacy and Genetic Discrimination: Effects on Individuals and Society; and (3) Altering Genes in Individuals and Populations. Each plenary session will be followed by relevant workshops. For example, the first plenary session will be followed by workshops titled "Keeping Abreast of Genetic Tests: New Challenges in the Doctor-Patient Relationship," "Medical Records, Privacy, and Informed Consent in the Post-Genome World," and "The Impact of Genetics on Drug Development: New Corporate Interest in Patient Records." Led by prominent lawyers, scientists, physicians, and ethicists, these workshops will provide an important bridge between the research community and professionals who are just beginning to grasp the potential impact of new genetic technologies. Participants will leave the program with a clear perspective on current challenges raised by genetics in their own fields, extensive background materials, continuing education credits (in medicine, law, and nursing), and new insights into how the genomics revolution will affect society as a whole. The conference organizers will disseminate the results of the conference through an interactive Web site maintained by the Whitehead Institute; The Gene Letter (an internet newsletter on genetics and public policy started in July 1996 under a grant from DOE); a special issue of ASLME's Journal of Law, Medicine & Ethics; review articles submitted to leading scientific journals, such as The American Journal of Human Genetics; a specially prepared CD-ROM to be distributed free-of-charge to medical, law, and public health libraries around the country; and two follow-up newsletters, six and twelve months after the conference, with up-to-date information about legislative trends, recent judicial decisions, and changes in public health policy related to genetics.