Center releases report on genetic town hall series

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Center releases report on genetic town hall series

http://www.dnapolicy.org/news.release.php?

action=detail & pressrelease_id=121

Washington, DC - January 30, 2009 - The Center has released a summary

report on a series of five town halls, part of its Public

Consultation Project on Genes, Environment, and Health.

In September 2006 the Genetics and Public Policy Center was awarded

funding from the National Human Genome Research Institute of the

National Institutes of Health (NIH) to study the American public's

attitudes toward a proposed large-cohort research study of genetic

and environmental contributors to health. Specifically, NIH and other

federal health agencies were interested in the possibility of

collecting both genetic and non-genetic information on half a million

volunteers who would be followed for a period of 10 or more years to

study the links between genetic and environmental factors and common

diseases. Prior to undertaking such an initiative, the agencies

wanted to understand public attitudes about and willingness to

participate in such a research project.

The Center's Public Consultation Project consisted of focus groups,

interviews with community leaders, a survey, and a series of town

halls. This report summarizes the five town hall sessions, which took

place from March-May 2008 in , Mississippi; Kansas City,

Missouri; Philadelphia, Pennsylvania; Phoenix, Arizona; and Portland,

Oregon.

The town halls were free, open to all, and publicly advertised. Each

addressed three major questions:

1. Do you think the government should create a national biobank? Why

or why not?

2. Would you participate in such a biobank? Why or why not?

3. What conditions need to be in place in order for the biobank to

happen?

Most participants felt that the biobank should go forward, and more

than half indicated they were likely to participate in it if asked.

Among the issues participants weighed in on were privacy protections

for participants and concerns about possible misuse of information

collected, the nature of the proposed study's consent agreement, and

the ability to get individual research results back from the study.

Report - The Genetic Town Hall: Public Opinion About Research on

Genes, Environment, and Health

Overview - Making Every Voice Count: Public Consultation on Genetics,

Environment, and Health

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