Genomic Data-Sharing Practices

Author:

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

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.

Publisher

Cambridge University Press (CUP)

Subject

Health Policy,General Medicine,Issues, ethics and legal aspects

Reference37 articles.

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3. 11. For description of these categories see Villanueva, supra note 3. Definitions reproduced here: open-access data-sharing initiatives offer data access with no required action, such as creating an account or submitting an application. Controlled-access data-sharing initiatives require an action, such as application submission and approval and/or data use agreement, to grant data access.

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5. “Genomic Data Sharing Policy”;Annals of Internal Medicine,2014

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