Friday, September 29, 2006

Preparing for population-based genetic studies in the US

A recent press release from the National Institutes of Health reports that the National Human Genome Research Institute has awarded ~$2 million to Johns Hopkins University to "conduct a public discussion about future potential large U.S. population-based studies examining the roles of genes and environment in human health."

Possibly coming soon to an area near you...
As part of its two-year, $2 million pilot project, the Washington, D.C.-based Genetics and Public Policy Center will obtain input on issues related to large, population-based studies through a series of focus groups in Jackson, Miss.; Kansas City, Mo.; Middletown and Philadelphia, Pa; Phoenix, Ariz.; and Portland, Oregon. In addition to the focus groups, the center plans to carry out a national web-based survey of 4,000 individuals and will conduct town hall meetings attended by 1,000 people in the five states. Community leaders will be interviewed as well. The grant will also be used to develop educational materials for the participants, providing them with information about large, population-based studies for the focus groups, survey, and town hall meetings.

Collecting public concerns about large-scale projects to gather and analyze genetic information from populations of people in the US seems to be a key step in figuring out how such projects need to be organized to secure public support and participation - demystifying the intent of these projects, understanding how the average person perceives population-based genetic research and where any misunderstandings or misperceptions lie, what key ethical issues arise in such conversations, how people regarding confidentiality and anonymity with regard to this particular kind of research -- it will be very interesting to see what people are thinking about these issues and how they share them with the Hopkins team.

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