1. Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.
- Author
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Deverka, Patricia A., Gilmore, Dierdre, Richmond, Jennifer, Smith, Zachary, Mangrum, Rikki, Koenig, Barbara A., Cook-Deegan, Robert, Villanueva, Angela G., Majumder, Mary A., and McGuire, Amy L.
- Subjects
MEDICAL informatics ,INFORMATION commons ,TRUST ,GENETIC research ,INDIVIDUALIZED medicine ,HUMAN genetics ,INFORMATION sharing ,BIG data ,BIOTIC communities ,EMPLOYEE recruitment ,HEALTH ,HOPE ,INFORMED consent (Medical law) ,MEDICAL care ,HEALTH policy ,MANAGEMENT of medical records ,MEDICAL research ,POLICY sciences ,PUBLIC health ,RISK assessment ,SELF-evaluation ,INFORMATION resources ,SOCIAL responsibility - 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. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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