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  1. Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
    Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
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  • What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
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  • Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
    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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