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

Author:

Deverka Patricia A.,Gilmore Dierdre,Richmond Jennifer,Smith Zachary,Mangrum Rikki,Koenig Barbara A.,Cook-Deegan Robert,Villanueva Angela G.,Majumder Mary A.,McGuire Amy L.

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.

Publisher

Cambridge University Press (CUP)

Subject

Health Policy,General Medicine,Issues, ethics and legal aspects

Reference46 articles.

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