Public Opinion Deliberation and Decision Making about Genetics Research

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DESCRIPTION (provided by applicant): How do ordinary Americans make sense of genetic research? How might they decide whether or not to participate in such research? The proposed study aims to address these questions, in a two-year panel study unfolding in three broad phases: (1) an initial, general-population baseline survey of relevant knowledge, attitudes and opinions; (2) a structured series of web-based group deliberations, whereby a random subset of survey participants meet three times over several months to respond to and discuss decision scenarios highlighting basic ethical and social issues implicated in genetics research; and (3) a series of concluding public opinion surveys, gathered from participants in the deliberative groups as well as from a fresh sample of the U.S. population. Key goals of the project include: (a) obtaining high-quality and representative public opinion data, of both a qualitative and quantitative nature, on beliefs and opinions about issues surrounding genetics research; (b) constituting deliberative forums known to produce diverse, informed, and representative opinion; (c) examining the changing nature of public opinion as it takes shape through public discourse and deliberation; (d) testing the impact of information framing on opinions about uses of genetic data, privacy, data sharing, and on willingness to participate in research; and (e) moving beyond conventional opinion-survey responses, by examining public decision making in the context of authentic choice scenarios related to participation in genetics research.