Author:
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
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.
Publisher
Cambridge University Press (CUP)
Subject
Health Policy,General Medicine,Issues, ethics and legal aspects
Reference49 articles.
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