5 US Cities To Host Genetic Town Halls

Main Category: Public Health
Also Included In: Genetics;  Conferences
Article Date: 25 Feb 2008 - 3:00 PST

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The Genetics and Public Policy Center will conduct a series of public town hall meetings to gather feedback from the public on their views related to a proposed large cohort study on the role of genes and environment in health. The town halls are part of a public consultation effort to inform the National Institutes of Health and other federal health agencies' discussions as they decide whether and how such a study might go forward.

One way to study a host of common diseases - such as diabetes, heart disease, and cancer - is to set up large "biobanks" of genetic and other biological samples and related health information from large numbers of volunteers. Scientists could use the information in the biobank to conduct research on how a person's genes, environment, and lifestyle interact to cause disease.

The National Institutes of Health and other federal health agencies are considering developing a biobank of samples and information from hundreds of thousands of volunteers who would then be followed for many years, and they have asked the Center to gather feedback from the general public. As part of a two-year, $2 million pilot project funded by the National Human Genome Research Institute, the Center is gathering input on issues related to large, population-based studies through a series of focus groups, community leader interviews, and town halls, as well as a national survey of more than 4,000 individuals.

At the town halls, members of the public will have the opportunity to discuss the pros and cons of establishing and participating in a national biobank with experts and each other. Potential discussion topics include whether the cohort study should proceed, who would have access to the database, who would decide what kind of research could be done using the biobank, why people would or would not participate, what responsibilities researchers and participants would have to each other, and what prospective participants would expect in return - such as return of test results or follow-up care.

The town hall events will be held on March 8 in Kansas City, MO; April 5 in Phoenix, AZ; April 19 in Jackson, MS; April 24 in Portland, OR; and May 13 in Philadelphia, PA. Members of the public can register online at http://www.dnapolicy.org/.

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The Genetics and Public Policy Center is a part of the Berman Institute of Bioethics at The Johns Hopkins University and is funded by The Pew Charitable Trusts with research funding from the National Human Genome Research Institute. The mission of the Genetics and Public Policy Center is to create the environment and tools needed by decision makers in both the private and public sectors to carefully consider and respond to the challenges and opportunities that arise from scientific advances in genetics.

Source: Rick Borchelt
Genetics & Public Policy Center, Johns Hopkins University

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