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Human Genome News, April-June 1996; 7(6)

ELSI Task Force Seeks Genetic-Testing Experiences

The Task Force on Genetic Testing, part of the DOE-NIH Working Group on Ethical, Legal, and Social Implications of Human Genome Research, is examining the development and provision of genetic tests in the United States. The task force seeks to learn about specific experiences, both good and bad, of laboratories providing tests and of physicians, genetic counselors, nurses, consumers, and others who order or receive test results.

Topics include but are not limited to informed consent, laboratory quality, use of genetic tests by nongeneticists such as primary care physicians, communication and counseling about test results, conflicts of interest in ordering tests, and the role of institutional review boards in using tests. Specific names of laboratories, organizations, and individuals should be omitted. [Contact: Neil Holtzman; 550 N. Broadway, Ste. 511; Baltimore, MD 21205 (410/955-7894, Fax: -0241, holtzman@welchlink.welch.jhu.edu)]

Interim Principles on Web
The task force has developed a set of interim principles in three areas: scientific validation of new tests, laboratory quality, and education and counseling related to delivery of test results. These interim principles, which are being made public to give interested parties the opportunity to comment, are on the Web (http://infonet.welch.jhu.edu/policy/genetics/). Further information may be obtained from staff attorney Joshua Brown (address above, jbrown@welchlink.welch.jhu.edu).

[2013 Post-production note: The url above is no longer operational. See the final 1997 report of the ELSI Task Force at http://www.genome.gov/10001733.]

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Human Genome Program, U.S. Department of Energy, Human Genome News (v7n6).

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