AEI Press
Publisher for the American Enterprize Institute
Washington D.C., 1999

The past decade has seen a tremendous expansion of scientific knowledge in the field of human genetics. But much more fundamental scientific research will be necessary to put the results of genetic studies to use in the diagnosis and treatment of disease. Many of the ideas emerging from the field of biology are transforming our society-how we view our relationship with nature; how we evaluate the quality of life; and how we cope with disease. Often, however, not enough is known about the meaning of genetic information or about how it is being interpreted and used. Transmitting genetic information from physicians to patients, and vice versa, will require special caution and special counseling because genetic information affects people in ways not yet fully understood. It may predict events that will occur years in the future-or not at all. It has a potential impact that challenges and may stigmatize both individuals and families. But genetic information will rarely provide specific directions. In this volume, six distinguished scholars offer an invaluable new framework within which government policymakers, Iawyers, scientists, medical doctors, ethicists, and other scholars and decisionmakers can begin to address the many complex issues raised by genetic testing.

Clarisa Long is the Abramson Fellow at the American Enterprise Institute, a research fellow at the Kennedy School of Government at Harvard University, and an associate professor of law at the University of Virginia School of Law. She is the coauthor of Genomic Information and Intellectual Property Rights: A Clash of Cultures (1999) and of U.S. Foreign Policy and Intellectual Property Protection in Latin America (1997). She has been a molecular biologist at the Centre for Gene Technology in New Zealand and at the National Cancer Institute of the National Institutes of Health and is an intellectual-property attorney in rivate ractice.