YOUR comments needed on whether NIH should start a population study on Genes, Environment, and Disease

Here's a chance for you as an individual to influence public policy. I know from experience that comments sent in response to a request such as the following are carefully read, dissected, and sorted prior to preparing a report on public response. Here's the information you need.

The Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS) (http://www4.od.nih.gov/oba/SACGHS.HTM) is seeking public input on a draft report, Policy Issues Associated with Undertaking a Large U.S. Population Cohort Project on Genes, Environment, and Disease. The draft report is available electronically at http://www4.od.nih.gov/oba/sacghs/public_comments.htm. SACGHS was established by the Department of Health and Human Services (HHS) to serve as a public forum for deliberations on the broad range of human health and societal issues raised by the development and use of genetic and genomic technologies and, as warranted, to provide advice on these issues.

The draft report focuses on preliminary and intermediate questions, steps, and strategies in five areas that should be addressed before an informed decision can be made about whether the United States should undertake a large population cohort project on the interaction of genes, environment and disease. These five areas are: research policy; research logistics; regulatory and ethical issues; public health implications of research results; and social implications of research results. The report also identifies options for how these issues might be addressed.

Comments on any aspect of the draft report are welcome. In particular, the Committee would appreciate the public’s assessment of whether:

  1. The policy issues identified in the draft report are appropriately focused;
  2. Any policy issues have been overlooked; and,
  3. The issues are organized in appropriate categories and addressed in such a way as to give policymakers sufficient understanding of why the issue is important.

In addition, the Committee would value feedback on the sections of the draft report that discuss the importance of public engagement and the mechanisms that could be employed to achieve such engagement.

Please address comments to Reed V. Tuckson, M.D., SACGHS Chair, and send them to Ms. Amita Mehrotra at mehrotraa@od.nih.gov. Comments also can be sent by fax to 301-496-9839 or by mail to:

Secretary’s Advisory Committee on Genetics, Health, and Society
ATTENTION: Ms. Amita Mehrotra
NIH Office of Biotechnology Activities
6705 Rockledge Drive, Suite 750
Bethesda, MD 20892 (20817 for non-US Postal Service mail)

In order to be considered in the development of the final report, comments should be submitted by close of business Monday, July 31, 2006. For more information about the Committee, please visit http://www4.od.nih.gov/oba/sacghs.htm.

There's one more thing you need to know. NIH is currently reviewing applications for a $1.5 million grant to test the feasibility of the population (biobank) project. Geneforum--as part of a consortium of schools and agencies--is one of the applicants for this preliminary grant. NIH expects that the "real" grant will be around $15 million.

Marie Godfrey, PhD

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