Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

TitleImportance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.
Publication TypeJournal Article
Year of Publication2019
AuthorsMcGuire, AL, Majumder, MA, Villanueva, AG, Bardill, J, Bollinger, JM, Boerwinkle, E, Bubela, T, Deverka, PA, Evans, BJ, Garrison, N'A, Glazer, D, Goldstein, MM, Greely, HT, Kahn, SD, Knoppers, BM, Koenig, BA, J Lambright, M, Mattison, JE, O'Donnell, C, Rai, AK, Rodriguez, LL, Simoncelli, T, Terry, SF, Thorogood, AM, Watson, MS, Wilbanks, JT, Cook-Deegan, R
JournalJ Law Med Ethics
Date Published2019 Mar
KeywordsCommunity Participation, Humans, Information Dissemination, Medical Informatics, Stakeholder Participation, Trust

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.

Alternate JournalJ Law Med Ethics
PubMed ID30994067
PubMed Central IDPMC6738947
Grant List141210 / / CIHR / Canada
P20 HG007243 / HG / NHGRI NIH HHS / United States
K01 HG008818 / HG / NHGRI NIH HHS / United States
R01 HG008918 / HG / NHGRI NIH HHS / United States
R01 CA237118 / CA / NCI NIH HHS / United States

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