Abstract
Making data broadly accessible is essential to creating a medical information commons. 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.
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DOI 10.1177/1073110519840482
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Have We Asked Too Much of Consent?Barbara A. Koenig - 2014 - Hastings Center Report 44 (4):33-34.

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