Open access data sharing in genomic research.

TitleOpen access data sharing in genomic research.
Publication TypeJournal Article
Year of Publication2014
AuthorsPereira, S, Gibbs, RA, McGuire, AL
JournalGenes (Basel)
Date Published2014 Aug 29

The current emphasis on broad sharing of human genomic data generated in research in order to maximize utility and public benefit is a significant legacy of the Human Genome Project. Concerns about privacy and discrimination have led to policy responses that restrict access to genomic data as the means for protecting research participants. Our research and experience show, however, that a considerable number of research participants agree to open access sharing of their genomic data when given the choice. General policies that limit access to all genomic data fail to respect the autonomy of these participants and, at the same time, unnecessarily limit the utility of the data. We advocate instead a more balanced approach that allows for individual choice and encourages informed decision making, while protecting against the misuse of genomic data through enhanced legislation.

Alternate JournalGenes (Basel)
PubMed ID25178093
PubMed Central IDPMC4198928
Grant ListR01 HG004333 / HG / NHGRI NIH HHS / United States
U54 HG003273 / HG / NHGRI NIH HHS / United States