Human Genome Project Information Archive
1990–2003

The Human Genome Project: Science, Law, and Social Change in the 21st Century

Reports from Cambridge Symposium

The highly successful symposium, "The Human Genome Project: Science, Law, and Social Change in the 21st Century," was held in Cambridge, Massachusetts, on April 23-24, 1998. It was sponsored by the Whitehead Institute of Biomedical Research and the American Society of Law, Medicine, and Ethics and supported in part by the Ethical, Legal, and Social Issues component of the DOE Human Genome Program. This largest ELSI meeting ever was attended by more than 840 lawyers, judges, physicians, state legislators, journalists, educators, students, consumer advocates, and religious leaders. Topics at plenary sessions and breakout groups included genetic privacy, DNA databanks, genetic discrimination, doctor-patient relationships, gene therapy, newborn screening, and gene alteration.

Highlights of several selected plenary talks are given below. Eric Lander set the stage, describing the science behind the Human Genome Project. Mark Rothstein spoke on protecting genetic privacy, which is increasingly important as genetic tests become available. The final two speakers, James Wilson and LeRoy Walters, discussed gene therapy, a class of disease prevention or treatment expected to become more available as technologies unravel the genetic factors involved in disease.

Articles about the talks are listed below:

• Genetics in the 21st Century
  Eric Lander, Whitehead Institute
• Protecting Genetic Privacy: Why It is So Hard to Do
  Mark A. Rothstein, Health Law and Policy Institute, University of Houston Law Center
• Human Gene Therapy: Present and Future
  James M. Wilson, Institute for Human Gene Therapy, University of Pennsylvania
• Ethical Issues in Human Gene Therapy
  LeRoy Walters, Kennedy Institute of Ethics, Georgetown University

A Free CD-ROM is also available. It includes meeting syllabus, plenary talk transcripts, and Web site links. Contact Gus Cervini, cervini@wi.mit.edu.

The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v10n1-2).