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.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
5R01HG004318-03
Application #
7687639
Study Section
Ethical, Legal, and Social Implications of Human Genetics Study Section (ELS)
Program Officer
Mcewen, Jean
Project Start
2007-09-22
Project End
2011-08-31
Budget Start
2009-09-01
Budget End
2011-08-31
Support Year
3
Fiscal Year
2009
Total Cost
$396,051
Indirect Cost
Name
University of Pennsylvania
Department
Type
Other Domestic Higher Education
DUNS #
042250712
City
Philadelphia
State
PA
Country
United States
Zip Code
19104
Kim, Sojung Claire; Cappella, Joseph N; Price, Vincent (2016) Online discussion effects on intention to participate in genetic research: A longitudinal experimental study. Psychol Health 31:1025-46