Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. Issue 1 (2019)

• Record Type: Journal Article
• Authors: McGuire, Amy L.; Majumder, Mary A.; Villanueva, Angela G.; Bardill, Jessica; Bollinger, Juli M.; Boerwinkle, Eric; Bubela, Tania; Deverka, Patricia A.; Evans, Barbara J.; Garrison, Nanibaa' A.; Glazer, David; Goldstein, Melissa M.; Greely, Henry T.; Kahn, Scott D.; Knoppers, Bartha M.; Koenig, Barbara A.; Lambright, J. Mark; Mattison, John E.; O'Donnell, Christopher; Rai, Arti K.; Rodriguez, Laura L.; Simoncelli, Tania; Terry, Sharon F.; Thorogood, Adrian M.; Watson, Michael S.; Wilbanks, John T.; Cook-Deegan, Robert
• Editors: Cook-Deegan, Robert; Majumder, Mary A.; McGuire, Amy L.
• Is Part Of: Journal of law, medicine & ethics. Volume 47:Issue 1(2019)
• Page Start: 12
• Page End: 20
• Publication Date: 2019
• 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: 10.1177/1073110519840480
• Languages: English
• ISSNs: 1073-1105

Abstract

Abstract : Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.