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

Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai & 7 others Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks, Robert Cook-Deegan

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)12-20
Number of pages9
JournalThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Volume47
Issue number1
DOIs
StatePublished - Mar 1 2019
Externally publishedYes

Fingerprint

Information Dissemination
Interviews
Research

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Cite this

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

In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, Vol. 47, No. 1, 01.03.2019, p. 12-20.

Research output: Contribution to journalArticle

McGuire, AL, Majumder, MA, Villanueva, AG, Bardill, J, Bollinger, JM, Boerwinkle, E, Bubela, T, Deverka, PA, Evans, BJ, Garrison, NA, Glazer, D, Goldstein, MM, Greely, HT, Kahn, SD, Knoppers, BM, Koenig, BA, Lambright, JM, Mattison, JE, O'Donnell, C, Rai, AK, Rodriguez, LL, Simoncelli, T, Terry, SF, Thorogood, AM, Watson, MS, Wilbanks, JT & Cook-Deegan, R 2019, 'Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons', The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, vol. 47, no. 1, pp. 12-20. https://doi.org/10.1177/1073110519840480
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. / Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 2019 ; Vol. 47, No. 1. pp. 12-20.
@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",
year = "2019",
month = "3",
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",

}

TY - JOUR

T1 - Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

AU - McGuire, Amy L.

AU - Majumder, Mary A.

AU - Villanueva, Angela G.

AU - Bardill, Jessica

AU - Bollinger, Juli M.

AU - Boerwinkle, Eric

AU - Bubela, Tania

AU - Deverka, Patricia A.

AU - Evans, Barbara J.

AU - Garrison, Nanibaa' A.

AU - Glazer, David

AU - Goldstein, Melissa M.

AU - Greely, Henry T.

AU - Kahn, Scott D.

AU - Knoppers, Bartha M.

AU - Koenig, Barbara A.

AU - Lambright, J. Mark

AU - Mattison, John E.

AU - O'Donnell, Christopher

AU - Rai, Arti K.

AU - Rodriguez, Laura L.

AU - Simoncelli, Tania

AU - Terry, Sharon F.

AU - Thorogood, Adrian M.

AU - Watson, Michael S.

AU - Wilbanks, John T.

AU - Cook-Deegan, Robert

PY - 2019/3/1

Y1 - 2019/3/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85064984409&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85064984409&partnerID=8YFLogxK

U2 - 10.1177/1073110519840480

DO - 10.1177/1073110519840480

M3 - Article

VL - 47

SP - 12

EP - 20

JO - Journal of Law, Medicine and Ethics

JF - Journal of Law, Medicine and Ethics

SN - 1073-1105

IS - 1

ER -