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Genomic Data-Sharing Practices

Published online by Cambridge University Press:  01 January 2021

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.

Type
Symposium Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2019

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Supplementary material: PDF

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Medical Information Commons Data Collection Instrument

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