Transcript Barbara A. Koenig, Ph.D., Professor of Medicine, Mayo Clinic College of Medicine and Faculty Associate at the Center for Bioethics, University of Minnesota

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
“A treatable
‘Genetic risk factor for’
disease like
severe asthma” ‘At increased risk of’
4
96
5
95
“An untreatable ‘Genetic risk factor for’ 12
disease like
‘At increased risk of’ 10
Alzheimer’s”
“Having a bad
‘Genetic risk factor for’
reaction to
certain types of ‘At increased risk of’
medicine”
Yes
88
90
4
96
4
96
Kaufman et al., Genetics in Medicine, 2008 Slide courtesy of Joan Scott, Genetics & Public Policy Center
“I would not want to get research results
because:” (n=4,659)
Disagree
“It would worry me.”
“It would be too much
information.”
“I am not that interested.”
83%
Agree
17%
92%
8%
93%
7%
Strongly Disagree
Disagree
Agree
Kaufman et al., Genetics in Medicine, 2008:10: 831-839 Slide courtesy of Joan Scott, Genetics & Public Policy Center
Strongly Agree
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
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%
I would not want any of my
individual research results
88%
Strongly Disagree
17%
12%
Disagree
Agree
Strongly Agree
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
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