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 persons 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 to attend by calling Erin Wiley at (202) 374-0840 or online at www.dnapolicy.org.
|Contact: Rick Borchelt|
Genetics & Public Policy Center, Johns Hopkins University