TY - JOUR
T1 - Genomic Data-Sharing Practices
AU - Villanueva, Angela G.
AU - Cook-Deegan, Robert
AU - Robinson, Jill O.
AU - McGuire, Amy L.
AU - Majumder, Mary A.
N1 - Publisher Copyright:
© 2019 American Society of Law, Medicine & Ethics.
PY - 2019/3/1
Y1 - 2019/3/1
N2 - 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 initiatives have some distance to go in achieving transparency.
AB - 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 initiatives have some distance to go in achieving transparency.
UR - http://www.scopus.com/inward/record.url?scp=85064964221&partnerID=8YFLogxK
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U2 - 10.1177/1073110519840482
DO - 10.1177/1073110519840482
M3 - Article
C2 - 30994063
AN - SCOPUS:85064964221
SN - 1073-1105
VL - 47
SP - 31
EP - 40
JO - Journal of Law, Medicine and Ethics
JF - Journal of Law, Medicine and Ethics
IS - 1
ER -