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 on Genes, Environment, and Health 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 Jackson, 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.
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.