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 language||English (US)|
|Number of pages||10|
|Journal||The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics|
|State||Published - Mar 1 2019|
ASJC Scopus subject areas
- Issues, ethics and legal aspects
- Health Policy