| Literature DB >> 30994067 |
Amy L McGuire1, Mary A Majumder1, Angela G Villanueva1, Jessica Bardill1, Juli M Bollinger1, Eric Boerwinkle1, Tania Bubela1, Patricia A Deverka1, Barbara J Evans1, Nanibaa' A Garrison1, David Glazer1, Melissa M Goldstein1, Henry T Greely1, Scott D Kahn1, Bartha M Knoppers1, Barbara A Koenig1, J Mark Lambright1, John E Mattison1, Christopher O'Donnell1, Arti K Rai1, Laura L Rodriguez1, Tania Simoncelli1, Sharon F Terry1, Adrian M Thorogood1, Michael S Watson1, John T Wilbanks1, Robert Cook-Deegan1.
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.Entities:
Mesh：
Year: 2019 PMID： 30994067 PMCID： PMC6738947 DOI： 10.1177/1073110519840480
Source DB: PubMed Journal: J Law Med Ethics ISSN： 1073-1105 Impact factor: 1.718