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.
The Process
In each community we selected a site that was publicly accessible and a day and time that would maximize attendance. Three of the town halls took place on Saturday mornings beginning at 10:00, while the remaining two were held on weekday evenings at 5:30. Each lasted approximately two and a half hours. Participants were given name tags when they arrived, and chose their own seats at one of the large, round tables in the room (except in Phoenix, where the town hall was held in an auditorium).
A senior member of the Genetics & Public Policy Center staff began each session by welcoming the participants and explaining that the goal of the Public Consultation Project – and of the town halls – was to gather feedback on a proposed large-cohort government study of genes, environment, and health. The staff member also explained that the Center did not have a stake in whether the study went forward, but rather was committed to reflecting public feedback accurately to NIH. She then introduced Jonathan Ortmans of the Public Forum Institute, who served as the moderator for each town hall. The moderator spoke briefly about what participants could expect during the town hall, and then laid out the three main questions the event would address:
- Do you think the government should create a national biobank? Why or why not?
- Would you participate in such a biobank? Why or why not?
- What conditions need to be in place in order for the biobank to happen?
Participants were shown a nine-minute video (see box, page 5) about the proposed study and given the opportunity to ask questions about it. They also used electronic keypads to indicate whether they thought the study should be done, and if so, whether they would participate. Aggregated responses were projected in real time on a screen behind the moderator to show participants the mood of the room and spur discussion.
The moderator then led participants through a series of questions about the proposed study. In each case he first gave participants time to discuss the question with others sitting at their table (or, in Phoenix, with those sitting nearby), and to jot down answers in individual workbooks. After about five minutes of deliberation, participants were encouraged to share their answers with the rest of the room. The answers again were projected in real time. Participants were then asked to vote on which of the listed factors were, in their view, the most significant. The results of these votes were shared immediately with the group. Near the end of the event, participants voted again on whether the study should go forward, and whether they would participate in such a study. They were asked to share any closing thoughts about the study, and finally were thanked for their participation by the Center staff member. Workbooks in which participants had shared their thoughts were collected as particpants exited.
