@article{00b83ed97f7f46f396bee4ebe0739f46,
title = "Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons",
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.",
author = "McGuire, {Amy L.} and Majumder, {Mary A.} and Villanueva, {Angela G.} and Jessica Bardill and Bollinger, {Juli M.} and Eric Boerwinkle and Tania Bubela and Deverka, {Patricia A.} and Evans, {Barbara J.} and Garrison, {Nanibaa' A.} and David Glazer and Goldstein, {Melissa M.} and Greely, {Henry T.} and Kahn, {Scott D.} and Knoppers, {Bartha M.} and Koenig, {Barbara A.} and Lambright, {J. Mark} and Mattison, {John E.} and Christopher O'Donnell and Rai, {Arti K.} and Rodriguez, {Laura L.} and Tania Simoncelli and Terry, {Sharon F.} and Thorogood, {Adrian M.} and Watson, {Michael S.} and Wilbanks, {John T.} and Robert Cook-Deegan",
note = "Publisher Copyright: {\textcopyright} 2019 American Society of Law, Medicine & Ethics.",
year = "2019",
month = mar,
day = "1",
doi = "10.1177/1073110519840480",
language = "English (US)",
volume = "47",
pages = "12--20",
journal = "Journal of Law, Medicine and Ethics",
issn = "1073-1105",
publisher = "Wiley-Blackwell",
number = "1",
}