Genetic town halls to be held in 5 US cities

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Genetic town halls to be held in 5 US cities

http://www.eurekalert.org/pub_releases/2008-02/gpp-gth022208.php

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 , MS; April 24 in

Portland, OR; and May 13 in Philadelphia, PA. Members of the public

can register to attend by calling Wiley at (202) 374-0840 or

online at www.dnapolicy.org.

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The Genetics and Public Policy Center is a part of the Berman

Institute of Bioethics at The s 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.