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Human Genome News Archive Edition

Human Genome News, July 1991; 3(2)

Genetic Counseling: Ethics, Values, and Professional Responsibilities

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

  • presymptomatic diagnosis of individuals carrying specific disease genes,
  • identification of multigene defects involved in common diseases such as heart disease and diabetes, and
  • identification of individual susceptibility and environmental factors that interact with genes to produce disease.

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:

  • What is a genetic disease and for which conditions will clients be offered screening?
  • What will be the counselor's role in protecting confidentiality and opposing genetic discrimination?
  • Who will provide genetic counseling services? In what setting will they be offered? Will primary practitioners become the first-line genetic counselors? Will the volume of available information foster the development of single-gene or subspecialty counselors? What skills and preparation will be needed by future counselors?
  • What level of certainty should be achieved before counselors share DNA diagnostic information with people potentially affected by a specific genetic condition?
  • Should ancillary information, such as nonpaternity or disorders in which the phenotypic effects are unknown, be shared with clients?
  • Should susceptibility information be conveyed in a prescriptive way that encourages lifestyle changes to reduce risk?
  • Should a public health intervention model supersede the current mode of nondirectiveness when genetic technology provides the possibility for cure or eradication of specific genetic diseases?
  • Who will be the client-the individual, the family, or society at large?
  • Should genetic counselors become their clients' advocates to counteract public health and economic pressures that threaten individual autonomy?

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 Project 1990–2003

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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.