Genomic Data-Sharing Practices

J Law Med Ethics. 2019 Mar;47(1):31-40. doi: 10.1177/1073110519840482.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Confidentiality*
  • Databases, Genetic / ethics*
  • Humans
  • Information Dissemination / ethics*
  • Informed Consent*
  • Patient Participation