Pew Funds Genetics and Public Policy Center's New Consumer Genetics Project
The Pew Charitable Trust has awarded $750,000 to the Genetics and Public Policy Center for a new project focused on consumer protections for applications of genetic testing.
Preface
In September 2006 the Genetics & 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 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 years or more in order 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.
For the Center, the agreement represented a welcome opportunity to continue and expand on our public engagement work. We believe strongly that the public should have a hand in shaping policy, including science policy. Accordingly, we’ve used focus groups, interviews, town hall meetings, and national surveys to assess public attitudes on topics ranging from embryonic stem cell research to genetic privacy to reproductive genetic technologies.
This project afforded us the perfect opportunity to both share information with the public and reflect citizens’ views and ideas back to planners of the research at NIH in a meaningful way.
The Public Consultation Project on Genetics, Environment, and Health began with a series of 16 focus groups in six locations. Participants were shown a video the Center had developed explaining the proposed large-cohort study, and then discussed whether the study should be done and why or why not, and what factors would influence their willingness to participate. Following the focus groups, 27 individual interviews about the proposed study were conducted with community leaders in the same locations. The qualitative data from the focus groups and interviews helped shape the subsequent phases of the project, a national survey and a series of town halls. The town halls took place in the same cities as the focus groups and the interviews.
The five town halls were held from March-May 2008 in Jackson, Mississippi; Kansas City, Missouri; Philadelphia, Pennsylvania; Phoenix, Arizona; and Portland, Oregon. These forums were larger and more diverse than individual focus groups, ranging from 76 to 134 participants each. We conducted the town halls both to gather further feedback about the proposed study and to test the town hall format’s effectiveness as a public consultation tool.
The town halls were free, open to all, and publicly advertised. In our recruitment efforts, we attempted to achieve a mix of town hall participants that matched the demographics of each community. In the end, the events attracted groups who tended to be more highly-educated than the general populace: More than half had received a bachelor’s degree, while fewer than 20 percent had no education beyond high school.
