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

J Law Med Ethics

Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policymakers. Dierdre Gilmore, M.A., is a Senior Researcher at the American Institutes f

Published: March 2019


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Article Abstract

A medical information commons (MIC) 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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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730638PMC
http://dx.doi.org/10.1177/1073110519840486DOI Listing

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