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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptNIH Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
Genet Med. Author manuscript; available in PMC Aug 1, 2011.
Published in final edited form as:
PMCID: PMC3045967
NIHMSID: NIHMS270800

Genomic Research and Wide Data Sharing: Views of Prospective Participants

Abstract

Purpose

Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. The present study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies (GWAS) 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, though 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 GWAS data sharing. Further research is needed to develop governance models that enact the values of stewardship.

Keywords: data sharing, genetics, electronic medical records, privacy, participant perspectives
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