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Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News, July 1991; 3(2)
Nearly 200 federal employees, academics, manufacturers, laboratory personnel, journalists, and others met April 18-20 in Washington, D.C., to discuss the technical, regulatory, and societal issues associated with the biotechnology used in diagnosing genetic disease. The following organizations sponsored the meeting, which was the first open forum to debate technical and regulatory questions:
Six panels covered a wide range of topics, focusing on sets of key questions in each session. The first session dealt with principles of molecular biology, tests used in detection of genetic disease, and strengths and limitations of the tests. A later panel stressed the federal role in regulating laboratories involved with DNA testing and presented quality assurance requirements as applied to the laboratories. Panelists included representatives of the College of American Pathologists, the New York State Health Department (licenser of the laboratories), the Council of Regional Networks, and Collaborative Research, Inc.
Consumers and genetic counselors discussed the impact of new tests, conceptions of risk, and the best ways to communicate information. Panelists debated the merits of the cystic fibrosis test as a prototype for introducing tests into clinical medicine. The final panel was composed of ethicists, lawyers, a health maintenance organization provider, and third-party payers; they addressed issues related to the social, ethical, and legal aspects of availability of new genetic information and debated the problems of insurance coverage, the potential for discrimination, and possible remedies.
At the final session each panel's moderator presented recommendations on key issues. These recommendations, along with panel summaries and presenters' abstracts, are contained in the final report.
To obtain a copy of the report, send a $13.50 check payable to Georgetown/DNA to:
Reported by Susann Wilkinson
Georgetown University School of Medicine
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v3n2).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.
