Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons. Issue 1 (March 2019)

• Record Type: Journal Article
• 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.
• Other Names: Cook-Deegan Robert guest-editor.; Majumder Mary A. guest-editor.; McGuire Amy L. guest-editor.
• Is Part Of: Journal of law, medicine & ethics. Volume 47:Issue 1(2019)
• Page Start: 70
• Page End: 87
• Publication Date: 2019-03
• Subjects: Medical laws and legislation -- United States -- Periodicals; Medical care -- Law and legislation -- United States -- Periodicals; Medical ethics -- Periodicals; Jurisprudence -- Periodicals; Legislation, Medical -- Periodicals; Legislation, Nursing -- Periodicals; Ethics -- Periodicals; Forensic Medicine -- Periodicals; Nursing -- Periodicals; Medicine -- Periodicals; Societies -- Periodicals; Medical care -- Law and legislation; Medical ethics; Medical laws and legislation; United States; Periodicals; 344.73041
• DOI: 10.1177/1073110519840486
• Languages: English
• ISSNs: 1073-1105

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.