Genomic Data-Sharing Practices.
Ontology highlight
ABSTRACT:
SUBMITTER: Villanueva AG
PROVIDER: S-EPMC6730666 | biostudies-literature | 2019 Mar
REPOSITORIES: biostudies-literature
Publications
Genomic Data-Sharing Practices.
Villanueva Angela G AG Cook-Deegan Robert R Robinson Jill O JO McGuire Amy L AL Majumder Mary A MA
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 20190301 1
Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initi ...[more]
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