Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, July 1991; 3(2)
The Center for Biomedical Ethics and the Department of Human Genetics of the University of Minnesota conducted a meeting on April 18-20 to address the impact of data produced in the Human Genome Project on the norms that guide genetic counseling practice. Several issues were raised at the meeting, which was cosponsored by the NIH National Center for Human Genome Research.
A current primary goal for genetic counselors is to support client autonomy by providing complete genetic information in a nondirective way so the values of the client, not those of the professional, guide reproductive decision making. Value neutrality has long served as a guide for conveying information about the diagnosis of potentially devastating and incurable genetic conditions. Because such reproductive decisions profoundly impact family life, the values of those who will live with the consequences are given primacy.
The Human Genome Project is likely to expand medical technologies that will enable
These new kinds of information will challenge the norm of nondirective counseling, raising questions of who provides and who receives information and how it is conveyed. As technologies make genetic information more accessible, society must decide how to use the information.
Meeting participants identified the following questions that society needs to address:
With data from the Human Genome Project increasing rapidly, problems arising from the application of new genetic knowledge in clinical practice must be addressed. The first challenge is to determine whose values will guide decision making in future genetic counseling.
Reported by Dianne Bartels
Center for Biomedical Ethics
University of Minnesota
Minneapolis, MN 55455
612/625-4917, Fax: 612/626-6800
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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.