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    Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons
    with Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder, and Amy L. McGuire
    Journal of Law, Medicine and Ethics 47 (1): 70-87. 2019.
    A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earn…Read more