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NHGRI Gives Genetics Center $2M to Gauge Americans' Opinion on Large Population Studies

NEW YORK (GenomeWeb News) — The National Human Genome Research Institute has given the Genetics and Public Policy Center $2 million to conduct a pilot “public discussion” about how the government can structure future studies looking at how genes and the environment affect human health.
NHGRI director Francis Collins said that “before we even think of moving forward” with the idea of launching large, population-based genetic studies “it is imperative that we begin a dialogue with the American public. This grant opens the door to that discussion.”
As part of the two-year project, the GPPC, which is part of the Berman Bioethics Institute at Johns Hopkins University, will hold a “series of focus groups” in six US cities to gauge how the public perceives this kinds of research.
The cities include: Jackson, Miss.; Kansas City, Mo.; Middletown and Philadelphia, Pa; Phoenix, Ariz.; and Portland, Ore.
The GPPC also plans to survey 4,000 individuals over the Internet and to conduct “town hall” meetings in these locations that it said will be attended by 1,000 people. The center said it will interview “community leaders” as well.
The initiative comes one year after the NHGRI and other NIH institutes brought together specialists from the fields of genetics, epidemiology, biostatistics, ethics, law, and social issues to “examine the scientific rationale and the logistical and technical challenges of a large, population-based study of genes, environment and health in the United States.”
Today, the NHGRI said that even though the project hasn’t identified where it can raise the cash it needs — it also hasn’t disclosed how much it believes such a project would cost — it said that “carefully outlining and considering the goals and key design aspects” of these kinds of studies “was deemed of high scientific importance.”
The NHGRI said such a study would include “hundreds of thousands” of volunteers who would be followed for “many years” to “ascertain and quantify the major environmental and genetic contributors to common illnesses.”
It would also try to explain why “health disparities” exist for certain “groups,” which the NHGRI said is “a topic of much concern.”
The NHGRI decided to ask the “American public” about its views for such a study after a Department of Health and Human Services genetics committee “concluded that broad-based public engagement will be essential in designing and implementing such studies” and recommended that “efforts begin to assess public attitudes toward this area of research.”

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