Genomic Data-Sharing Practices. Issue 1 (2019)

• Record Type: Journal Article
• Authors: Villanueva, Angela G.; Cook-Deegan, Robert; Robinson, Jill O.; McGuire, Amy L.; Majumder, Mary A.
• Editors: Cook-Deegan, Robert; Majumder, Mary A.; McGuire, Amy L.
• Is Part Of: Journal of law, medicine & ethics. Volume 47:Issue 1(2019)
• Page Start: 31
• Page End: 40
• Publication Date: 2019
• Subjects: Medical laws and legislation -- United States -- Periodicals; Medical care -- Law and legislation -- United States -- Periodicals; Medical ethics -- Periodicals; Jurisprudence -- Periodicals; Legislation, Medical -- Periodicals; Legislation, Nursing -- Periodicals; Ethics -- Periodicals; Forensic Medicine -- Periodicals; Nursing -- Periodicals; Medicine -- Periodicals; Societies -- Periodicals; Medical care -- Law and legislation; Medical ethics; Medical laws and legislation; United States; Periodicals; 344.73041
• DOI: 10.1177/1073110519840482
• Languages: English
• ISSNs: 1073-1105

Abstract

Abstract : 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.