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A Public Consultation on Genetic Testing

  December, 11 1999 10:11
your information resource in human molecular genetics
December 1, 1999 - January 31, 2000

The Secretary's Advisory Committee on Genetic Testing (SACGT) is seeking comments from the public on oversight and other issues relating to genetic testing, and we would welcome receiving your views. We are endeavoring to reach as broad an audience as possible and would appreciate your help in
disseminating this request to others you think may have an interest in commenting on these issues. In addition to this e-mail notice, SACGT is soliciting public comments through a mailing, a Federal Register notice, a web site (http://www4.od.nih.gov/oba/sacgt.htm), and a public meeting on January 27, 2000 in Baltimore, Maryland (http://www4.od.nih.gov/oba/sacgtpubmtg.htm).

Oversight of genetic testing is relevant to those who undergo genetic testing, those who provide tests in health care practice, and those who work or invest in the development of such tests. In addition, since genetic testing is expected to expand in the future, all members of the general public have a stake in the future oversight of genetic testing, including those who have not been identified as having a genetic condition or have not yet had any experience with such tests.

SACGT was chartered to advise the Department of Health and Human Services (DHHS) on the medical, scientific, ethical, legal, and social issues raised by the development and use of genetic tests. Dr. David Satcher, Surgeon General and Assistant Secretary for Health, charged SACGT to assess, in consultation with the public, the adequacy of current oversight of genetic tests. This assessment requires consideration of the potential benefits and risks of genetic tests (including socioeconomic, psychological, and medical)
to individuals, families, and society. Considering the benefits and risks of each genetic test is critical in determining its appropriate use in clinical and public health practice. If, after public consultation and analysis, SACGT finds that other oversight measures for genetic tests are warranted, it has been asked to recommend options for such oversight.

Given the significance of the issue and its potential impact on the American people, public perspectives on oversight must be considered before determining an appropriate course of action. A document, A Public Consultation on Oversight of Genetic Tests, was developed by SACGT to provide background information about genetic tests, including their current limitations, benefits and risks, and the provisions for oversight now in place. This document presents five specific issues and related questions for public comment, and a sixth set of questions is presented to provide the public with an opportunity to comment on other issues relevant to genetic testing. We would welcome your input on any one or all of the issues. The document, along with summaries in English and Spanish, can be obtained from the SACGT consultation Web site or by contacting the SACGT at the address below.

SACGT encourages you to participate in the consultation process in response to the Federal Register notice, through our Web-site consultation (http://www4.od.nih.gov/oba/sacgt.htm), or by attending the public meeting on January 27, 2000. Comments can be submitted on-line through the SACGT consultation Web site or can be mailed or faxed to the address below.
Comments must be submitted by January 31, 2000.

Secretary's Advisory Committee on Genetic Testing
National Institutes of Health
6000 Executive Boulevard, Suite 302
Bethesda, Maryland 20892
Phone: 301-496-9838
FAX: 301-496-9839
Web: http://www4.od.nih.gov/oba/sacgt.htm

Message posted by: Frank S. Zollmann

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