Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, September 1992; 4(3)
The Task Force on Genetics and Insurance of the NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues met May 31-June 1 in Chevy Chase, Maryland. The meeting marked the 1-year anniversary of the task force and served as a transition from its first-year goal of gathering information to its second-year focus on principles and policy options.
Task force members identified three remaining gaps in their factual knowledge and took steps to fill them.
As a transition step from fact gathering to principle development, the task force worked to define problems presented by genetic information in the areas of underwriting, reimbursement, and records management. Members examined the consequences of genetic knowledge that distinguish it from other types of information, including family stigma, psychological and emotional import, the authoritarian shadow of eugenics, reproductive impact, and prognostic uncertainty. The group also discussed the improving quality of genetic information, its potential application to increased numbers of people, and the lack of clear clinical protocols for its use. Discussion also focused on potential over-interpretation and misinterpretation by the insurance industry and the public.
To clarify discussions, future reports, and recommendations, task force members agreed on definitions for certain key terms. Genetic information was defined as "alterations of the genome that one is born with or that one acquires." This definition includes alterations discovered by the five methods presented at the meeting by members Anderson, Jonathan Beckwith (Harvard Medical School), and Rob Bier (American Council of Life Insurance): molecular genetic techniques; examination of chromosomes by microscopy; chemical, immunochemical, or biochemical; medical or physical examination; and family history.
The task force established a subcommittee to define principles and circulate them to the full group in September. Members also drafted an outline for the final report to be completed in May 1993.
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Human Genome Program, U.S. Department of Energy, Human Genome News (v4n3).
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.