More than 800 people attended the Whitehead Institute's national policy symposium, "The Human Genome Project: Science, Law, and Social Change in the 21st Century," last week in Kresge Auditorium. The symposium, co-sponsored by the American Society of Law, Medicine & Ethics (ASLME), was one of the largest and most diverse science policy programs ever held in the United States.
"This event focused on the potential impact of the genetic revolution on daily life," said Dr. David C. Page, co-chair of the conference and a Whitehead member. "The press and others have written and talked extensively about human cloning; cloning is important, but it's unlikely that it would ever affect large segments of society. In contrast, genetic testing, DNA data banks and the potential for genetic discrimination could affect all of us."
The conference began with a plenary session on "The Information Revolution in Genetics," featuring Professor of Biology Eric Lander (also of Whitehead) and Dr. Uta Francke of Stanford University. Following this basic guide to genomics and medical genetics, the audience divided into four forum sessions, ranging from "New Challenges in the Patient-Doctor Relationship" to "The Impact of Genetics on Drug Development: New Corporate Interest in Patient Records." Other plenary and forum sessions dealt with genetic discrimination, creation and use of DNA data banks, the limits of gene therapy and many related topics.
"We're at the threshold of a great revolution in biology and medicine. This conference was an important opportunity to help shape the future," said conference co-chair Dr. Philip Reilly of the Shriver Center for Mental Retardation.
The audience included attorneys, justices from state and federal courts, more than 100 consumers, physicians, nurses, genetic counselors, state legislators, students, clergy, high school teachers, business leaders, scientists, and professors from schools of law, medicine and public health. Reporters covered the meeting for The Boston Globe, National Public Radio, The Dallas Morning News, US News and World Report, The Atlantic Monthly, Scientific American and more than a dozen other publications.
"Each constituency seemed pleased despite taking away different information," said Whitehead Director Dr. Gerald R. Fink, who, with Drs. Page and Lander, pioneered the development of the Whitehead Task Force on Genetic Testing, Privacy, and Public Policy five years ago. The task force was formed to raise public understanding and awareness of the potential impact of the Human Genome Project on society.
Plenary sessions and other materials from the conference will be available in a special fall issue of ASLME's Journal of Law, Medicine& Ethics and on the Whitehead Institute web site at
The conference was supported in part by the Alfred P. Sloan Foundation; the Institute for Civil Society; the Office of Biological and Environmental Research of the US Department of Energy; and the Ethical, Legal, and Social Implications Research Program of the National Human Genome Research Institute, National Institutes of Health.
Other supporting organizations included Biogen, Inc.; Coopers & Lybrand LLP; Genzyme Corp.; the Massachusetts Bar Association; the Massachusetts Biotechnology Council; the Massachusetts Department of Public Health; Millennium Pharmaceuticals, Inc. and the Museum of Science.
A version of this article appeared in MIT Tech Talk on April 29, 1998.
