Genetics & Public Policy Center
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Biobanks & Large-Cohort Projects

Making Every Voice Count:
Public Consultation on Genetics, Environment, and Health

While some diseases are known to be caused by single genes or several genes working together, most common diseases - such as heart disease, cancer, and stroke - are more complicated and are a product of the interaction of genetics, lifestyle, and environment. The research necessary to understand these complex interactions is very challenging, and would require the participation of hundreds of thousands of volunteers who would be followed for many years. Such a study has yet to be undertaken in the U.S., and public consultation is crucial to determining whether it should done, and if so, how.

As part of a two-year, $2 million pilot project funded by the National Human Genome Research Institute, the Genetics and Public Policy Center has gathered input on issues related to large, population-based studies through a series of focus groups and community leader interviews in Jackson, Miss.; the Kansas City area; Middletown and Philadelphia, Pa; Phoenix, Ariz.; and Portland, Ore. In addition to the focus groups, the Center conducted a national Web-based survey of up to 4,000 individuals and hosted town hall meetings in the five locations. The Center also developed educational materials to provide background information for the focus groups, survey, and town hall meetings.

This project will help determine what Americans think about large-scale, long-term gene-environment research projects, what kinds of information people would need to decide whether to participate in such projects, what measures they would expect to be in place to safeguard their consent and privacy, what kinds of medical data they expect would be shared with them, and how they view this potential large-cohort study as contributing to U.S. public health or their own personal health. The pilot study is expected to inform the design and implementation of a large-cohort gene-environment study under consideration at the National Institutes of Health and other federal agencies, and to set the groundwork for ongoing public consultation associated with such studies.

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