Request for Public Comment
Draft Information Brochure on Genetic Testing for the Public
Secretary's Advisory Committee on Genetic Testing
Comments due by April 18, 2002

The Secretary's Advisory Committee on Genetic Testing (SACGT) is soliciting public comment on a draft information brochure entitled Genetic Testing: Some Basic Questions and Answers. A copy of the brochure is attached and can also be accessed online at http://www4.od.nih.gov/oba/SACGT/request_for_public_comment.htm. SACGT developed the brochure to help inform the general public about genetic tests and to suggest the type of questions they should consider asking if they are faced with a decision about whether to have a genetic test.

Using a question and answer format, the brochure explains what genetic tests are, the different purposes for which they are used, how they are similar to and different from other medical tests, and some of their limitations and possible outcomes (potential benefits and risks); addresses insurance policy implications, privacy, confidentiality, and discrimination; provides informational and services resources; and outlines questions to ask oneself and one's healthcare provider when considering a genetic test. The brochure does not provide information about specific genetic tests nor is it intended for patients or consumers who have had experience with genetic testing.

SACGT would appreciate your assessment of the content, readability, and utility of the brochure and strategies for its dissemination. We would like to know whether you think the brochure could serve as a model for the development of more specific test information brochures and whether a recommendation should be made to the Secretary of Health and Human Services about the merit of funding the development of additional brochures. In particular, we would appreciate your thoughts on the following specific questions:

1. Is the brochure useful? How might you use such a brochure?
2. Is the content appropriate and complete? Is it understandable and written at the appropriate reading level? Are there other issues that should be addressed? Are there other questions that should be included?
3. Is the tone of the brochure appropriate? Is it culturally appropriate to a wide range of groups?
4. Should the brochure be produced in other languages and, if so, which languages?
5. To whom and how should this brochure be disseminated?
6. Should the brochure serve as a model for the development of more specific test information brochures? Who should be tasked with developing such brochures? Is this an appropriate role for SACGT? Should SACGT recommend that HHS support the development of test-specific information brochures?
7. HRSA staff please send your comments by April 18, 2002, to Michelle Puryear in MCHB or Suzanne Feetham in BHPr.

The Department of Health and Human Services established SACGT to advise and make recommendations to the Secretary through the Assistant Secretary for Health on all aspects of the development and use of genetic tests. SACGT is directed to (1) recommend policies and procedures for the safe and effective incorporation of genetic technologies into health care; (2) assess the effectiveness of existing and future measures for oversight of genetic tests; and (3) identify research needs related to the Committee's purview. For more information on SACGT, please visit our website at http://www4.od.nih.gov/oba/sacgt.htm.