Genomic research and wide data sharing: Views of prospective participants

• Published in: Genetics in medicine Vol. 12; no. 8; pp. 486 - 495
• Main Authors: Trinidad, Susan Brown, Fullerton, Stephanie M., Bares, Julie M., Jarvik, Gail P., Larson, Eric B., Burke, Wylie
• Format: Journal Article
• Language: English
• Published: New York Elsevier Inc 01.08.2010; Nature Publishing Group US
• Subjects: Adult; Biomedical and Life Sciences; Biomedicine; data sharing; electronic medical records; Focus Groups; genetics; Genomics - ethics; Genomics - methods; Health Knowledge, Attitudes, Practice; Human Genetics; Humans; Information Dissemination - ethics; Information Dissemination - methods; Laboratory Medicine; Middle Aged; participant perspectives; privacy; Public Opinion; Research Subjects; privacy; genetics; electronic medical records; participant perspectives; data sharing
• ISSN: 1098-3600; 1530-0366; 1530-0366
• DOI: 10.1097/GIM.0b013e3181e38f9e

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. Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18–34 years, 35–50, >50). 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. Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.