NHGRI Long-Range Planning - Comments

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services

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Comments on "Revised White Paper #2: Applying Genomics to Clinical Problems - Therapeutics"

My comments are directed at the current availability and accessibility of genetic information for consumers. There is a lot of information being made available by NHGRI, but there needs to be more and it could be made much more accessible.
By way of personal example, a friend was diagnosed with hemochromatosis this past year. A google search turns up the NDDIC page as the first hit, and this page is not comprehensive or well organized visually for a consumer. There is little mention of the important dietary management and there is no information to consumers about how to manage weekly phlebotomy. Other google hits turn up more reader friendly pages, but the information there is sometimes contradictory to other similar pages.
The NHGRI webpage is not organized in a way that is accessible to health care consumers and does not directly provide information regarding management of this condition. There are links to other good webpages, but these links are embedded in other pages and a typical consumer will not find them easy to access.
By contrast, I have found that the NIH NCCAM webpage is a more useful "clearinghouse" of information for consumers re: CAM treatments. The links to health information are more clear and accessible, with video clips, etc. A similar model of a site provided for consumers regarding information on genetic conditions is overdue.
Perhaps NHGRI has a mission more aligned with research than provision of consumer information, hence the designation of a research institute rather than something more related to the dissemination of information. If so, a related institute with a primary mission of dissemination would be helpful.
Also, there continues to be a lack of emphasis on efforts targeted toward prevention, specifically in regards to lifestyle recommendations. In the hemochromatosis example, my friend has yet to receive a referral or recommendation to a nutritionist who specializes in this condition. There are also no references to this resource on any of the websites that I reviewed.
Since many consumers will not even have access to the internet, the same information needs to be made available in print form, perhaps as pamphlets in doctors' offices.

(303) Tuesday, June 30, 2009 12:16 PM

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