The Genetic Town Hall: Making Every Voice Count

Abstract

In six American cities during the summer of 2004, a unique information exchange took place. From students to seniors, from medical professionals to people with disabilities, from the homeless to the well-to-do, people with all types of perspectives convened at Genetic Town Halls to learn more about a matter that aff ects the present and future generations — reproductive genetic testing. Reproductive genetic testing, which will touch millions of people, give parents more options in having healthy babies, but they also raise troubling questions about future uses. Today, it is possible to test for serious genetic disorders; tomorrow, it may be possible to test for genetic contributions to characteristics such as intelligence. Th e policy debate about these issues is oft en framed in the extremes. Yet the views of most Americans tend to be more nuanced. To better understand American opinions and attitudes about reproductive genetic testing and the values that shape them, the Genetics and Public Policy Center has undertaken extensive pubic opinion research through surveys, focus groups and interviews. A diffi culty with these approaches, however, is that individuals are sometimes asked to comment on issues involving complex technologies about which they may have had little opportunity to consider in depth. Th us, the Center undertook a project to obtain more informed, refl ective opinions by providing an opportunity for individuals to learn more about reproductive genetic testing, hear diff erent perspectives about the issues and engage in discussions with fellow citizens. Th e six Genetic Town Halls: Making Every Voice Count provided a setting for informed debate and discussion about the benefi ts and potential drawbacks of reproductive genetic testing. Th e Town Halls went beyond simple focus groups designed to harvest initial impressions; they instead set a process in motion, aimed at generating continued engagement and discussion about the complex issues surrounding reproductive genetic testing. From advance media coverage to personal conversations with family and friends aft erward, the forums raised awareness and knowledge levels in the six communities involved. Information about reproductive genetic testing and the range of issues it raises was provided at each forum in the form of videos prepared by the Genetics and Public Policy Center. Computer animation sequences off ered an accessible grounding in the science, with an overview of the types of reproductive genetic testing: carrier testing, preimplantation genetic diagnosis and prenatal testing. Th rough interview footage, the videos also off ered viewpoints about reproductive genetic testing from a variety of experts in fi elds ranging from medicine to theology. In addition, participants could ask experts on site to clarify issues or further explain the technologies at any point during the discussions. Participants also had an opportunity to hear from members and leaders of their own communities. Th eologians and clergy, parents with fi rsthand experience of reproductive genetic testing, medical professionals, community activists, elected offi cials and those in the biotech industry gathered as local expert resources for the forums in each community and shared their views with the audience during panel discussions. Preface 4 The Genetic Town Hall: Making Every Voice Count As participants learned, debated and deliberated during the 3.5-hour sessions, they registered their opinions through a series of polling questions and during facilitated smalland large-group discussions. Th e forums, free and open to the public, were supported by a grant from Th e Pew Charitable Trusts. All viewpoints were welcomed and sought. Outreach in each community emphasized attracting participants from all walks of life, all neighborhoods and all demographics. Some participants brought a blank slate and others, profound personal experiences with genetic testing or genetic disorders. At the Town Halls, participants made it clear that they wanted information, discussion and input in the way these technologies are developed and implemented. Many expressed concern that with the dramatic advances in knowledge and technology in genetics, the Town Hall was not only critical, but on the edge of being too late. Th ey pointed out that with rapid changes in the fi eld, such discussions must be ongoing and widespread. Th is report summarizes the issues brought up by the participants in the six Town Halls and their responses to questions posed. It looks at general trends, brings out points of agreement and presents issues about which individuals were divided. Also included are individual reports from each forum that allow for a glimpse at the attitudes and opinions in each of the six cities. As a whole, these reports off er an indication of the eff ectiveness of engaging the public in the policy debate about advances in genetics and a picture of the public’s values and policy preferences for guiding the future use of these potent tests. It is the hope of the Genetics and Public Policy Center that the informed discussion begun this summer will not end with the change of season, but that participants will expand these activities in their own communities and throughout the nation.