Genetics in Medicine · 2015 · 240 citations · 58 references
In 2011 an Advanced Notice of Proposed Rulemaking suggested that de‑identified human data and specimens be included in biobanks only with patient consent, and the 2015 NIH Genomic Data Sharing policy required broad consent from almost all research participants. We conducted a systematic literature review of attitudes toward biobanking, broad consent, and data sharing. We searched MEDLINE, Web of Science, EthxWeb, and GenETHX, screened studies with DistillerSR, and included 48 studies comprising surveys, focus groups, mixed methods, interviews, and consent form analyses. Study quality ranged from good (19) to fair (27) to poor (2), and although many participants objected, broad consent was often preferred over tiered or study‑specific consent, especially when it was the only option, samples were de‑identified, biobank logistics were communicated, and privacy was addressed. Genet Med 18(7):663‑671.
In 2011, an Advanced Notice of Proposed Rulemaking proposed that de-identified human data and specimens be included in biobanks only if patients provide consent. The National Institutes of Health Genomic Data Sharing policy went into effect in 2015, requiring broad consent from almost all research participants.We conducted a systematic literature review of attitudes toward biobanking, broad consent, and data sharing. Bibliographic databases included MEDLINE, Web of Science, EthxWeb, and GenETHX. Study screening was conducted using DistillerSR.The final 48 studies included surveys (n = 23), focus groups (n = 8), mixed methods (n = 14), interviews (n = 1), and consent form analyses (n = 2). Study quality was characterized as good (n = 19), fair (n = 27), and poor (n = 2). Although many participants objected, broad consent was often preferred over tiered or study-specific consent, particularly when broad consent was the only option, samples were de-identified, logistics of biobanks were communicated, and privacy was addressed. WillIngiveness for data to be shared was high, but it was lower among individuals from under-represented minorities, individuals with privacy and confidentiality concerns, and when pharmaceutical companies had access to data.Additional research is needed to understand factors affecting willingness to give broad consent for biobank research and data sharing in order to address concerns to enhance acceptability.Genet Med 18 7, 663-671.
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Public Opinion about the Importance of Privacy in Biobank Research
David Kaufman, Juli Murphy-Bollinger, Joan Scott et al. · The American Journal of Human Genetics · 2009 · 280 citations · Full text