Genetics and Public Policy Center

“A treatable disease like severe asthma” “Having a bad reaction to certain types of medicine” No Yes “An untreatable disease like Alzheimer’s” “Would you want to know if researchers found that you [have a/were]:” (n=4,659) ‘Genetic risk factor for’ ‘At increased risk of’ ‘Genetic risk factor for’ ‘At increased risk of’ Kaufman et al., Genetics in Medicine, 2008 Slide courtesy of Joan Scott, Genetics & Public Policy Center

“It would worry me.” “I am not that interested.” Disagree Agree 17% “I would not want to get research results because:” (n=4,659) Strongly Disagree Disagree Agree Strongly Agree 8% “It would be too much information.” 7% 83% 92% 93% Kaufman et al., Genetics in Medicine, 2008:10: Slide courtesy of Joan Scott, Genetics & Public Policy Center

If individual research results were not returned to participants, would you be more or less likely to participate? 75% less likely 4% more likely 22% it would not make a difference n=4,659 Kaufman et al., Genetics in Medicine, 2008:10: Slide courtesy of Joan Scott, Genetics & Public Policy Center

I would not want any of my individual research results I would want to know all of my individual research results 90% Assume research done in a certified lab. In thinking about individual research results, which would you prefer? (n=931) 17% I do not care if I get any individual research results 12% 10% 83% 88% Strongly Disagree Disagree Agree Strongly Agree 5 Confidential. N=931. Weighted. GPPC 2008 Kaufman et al., Genetics in Medicine, 2009:11: Slide courtesy of Joan Scott, Genetics & Public Policy Center

Summary Findings 1.A strong interest in return of research results in two populations whether actionable or not genetic and generic “let me decide” what is important 2.Interest motivates participation Slide courtesy of Joan Scott, Genetics & Public Policy Center