Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Journal of Law, Medicine and Ethics 47 (1):70-87 (2019)
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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 earning the public's trust.



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