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

Authors :
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.
Source :
Journal of Law, Medicine & Ethics; Spring2019, Vol. 47 Issue 1, p70-87, 18p, 1 Diagram, 2 Charts
Publication Year :
2019

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]

Details

Language :
English
ISSN :
10731105
Volume :
47
Issue :
1
Database :
Complementary Index
Journal :
Journal of Law, Medicine & Ethics
Publication Type :
Academic Journal
Accession number :
135929131
Full Text :
https://doi.org/10.1177/1073110519840486