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Genetics and Public Policy Center

Genetics and Public Policy Center. http://www.dnapolicy.org/. “Would you want to know if researchers found that you [have a/were]:” (n=4,659). No. Yes. “A treatable disease like severe asthma”. ‘Genetic risk factor for’. 4. 96. ‘At increased risk of’. 5. 95. “An untreatable

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Genetics and Public Policy Center

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  1. Genetics and Public Policy Center http://www.dnapolicy.org/

  2. “Would you want to know if researchers found that you [have a/were]:” (n=4,659) No Yes “A treatable disease like severe asthma” ‘Genetic risk factor for’ 4 96 ‘At increased risk of’ 5 95 “An untreatable disease like Alzheimer’s” ‘Genetic risk factor for’ 12 88 ‘At increased risk of’ 10 90 “Having a bad reaction to certain types of medicine” ‘Genetic risk factor for’ 4 96 ‘At increased risk of’ 4 96 Kaufman et al., Genetics in Medicine, 2008 Slide courtesy of Joan Scott, Genetics & Public Policy Center

  3. Strongly Disagree Disagree Agree Strongly Agree “I would not want to get research results because:” (n=4,659) Agree Disagree “It would worry me.” 83% 17% “It would be too much information.” 92% 8% “I am not that interested.” 93% 7% Kaufman et al., Genetics in Medicine, 2008:10: 831-839 Slide courtesy of Joan Scott, Genetics & Public Policy Center

  4. 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: 831-839 Slide courtesy of Joan Scott, Genetics & Public Policy Center

  5. Strongly Disagree Disagree Agree Strongly Agree Assume research done in a certified lab. In thinking about individual research results, which would you prefer? (n=931) I would want to know all of my individual research results 10% 90% I do not care if I get any individual research results 83% 17% I would not want any of my individual research results 88% 12% 5 Confidential. N=931. Weighted. GPPC 2008 Kaufman et al., Genetics in Medicine, 2009:11: 329- 337 Slide courtesy of Joan Scott, Genetics & Public Policy Center

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

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