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

    Research output: Contribution to journalArticle

    7 Scopus citations

    Abstract

    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.

    Original languageEnglish (US)
    Pages (from-to)21-30
    Number of pages10
    JournalJournal of Law, Medicine and Ethics
    Volume47
    Issue number1
    DOIs
    StatePublished - Mar 1 2019

    ASJC Scopus subject areas

    • Issues, ethics and legal aspects
    • Health Policy

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  • Cite this

    Villanueva, A. G., Cook-Deegan, R., Koenig, B. A., Deverka, P. A., Versalovic, E., McGuire, A. L., & Majumder, M. A. (2019). Characterizing the Biomedical Data-Sharing Landscape. Journal of Law, Medicine and Ethics, 47(1), 21-30. https://doi.org/10.1177/1073110519840481