Genomic Data-Sharing Practices

Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire, Mary A. Majumder

Research output: Contribution to journalArticle

3 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)31-40
Number of pages10
JournalThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Volume47
Issue number1
DOIs
StatePublished - Mar 1 2019

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

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