Genomic research and wide data sharing: views of prospective participants.
OBJECTIVE
Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research.


METHODS
Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18-34 years, 35-50, >50).


RESULTS
Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations.


CONCLUSIONS
Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.
Department of Bioethics & Humanities, University of Washington, Seattle, WA 98195-7120, USA. sbtrini@uw.edu
Susan Brown
SB
Trinidad
Stephanie M
SM
Fullerton
Julie M
JM
Bares
Gail P
GP
Jarvik
Eric B
EB
Larson
Wylie
W
Burke
D000328:Adult; D017144:Focus Groups; D023281:Genomics / Q000941:ethics* / Q000379:methods; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033181:Information Dissemination / Q000941:ethics* / Q000379:methods; D008875:Middle Aged; D011639:Public Opinion; D035842:Research Subjects