Open Access Data Sharing in Genomic Research
Open Access
- 29 August 2014
- Vol. 5 (3), 739-747
- https://doi.org/10.3390/genes5030739
Abstract
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.Keywords
Funding Information
- Cancer Prevention and Research Institute of Texas (RP101353)
- National Human Genome Research Institute (HG004333)
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