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; Laura L. Rodriguez; Tania Simoncelli; Sharon F. Terry; Adrian M. Thorogood; Michael S. Watson; John T. Wilbanks; Robert Cook-Deegan

doi:10.1177/1073110519840480

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

Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks, Robert Cook-Deegan

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23 Citations (Scopus)

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 language	English (US)
Pages (from-to)	12-20
Number of pages	9
Journal	Journal of Law, Medicine and Ethics
Volume	47
Issue number	1
DOIs	https://doi.org/10.1177/1073110519840480
Publication status	Published - 1 Mar 2019

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10.1177/1073110519840480

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McGuire, A. L., Majumder, M. A., Villanueva, A. G., Bardill, J., Bollinger, J. M., Boerwinkle, E., Bubela, T., Deverka, P. A., Evans, B. J., Garrison, N. A., Glazer, D., Goldstein, M. M., Greely, H. T., Kahn, S. D., Knoppers, B. M., Koenig, B. A., Lambright, J. M., Mattison, J. E., O'Donnell, C., ... Cook-Deegan, R. (2019). Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. Journal of Law, Medicine and Ethics, 47(1), 12-20. https://doi.org/10.1177/1073110519840480

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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",

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doi = "10.1177/1073110519840480",

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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', Journal of Law, Medicine and Ethics, vol. 47, no. 1, pp. 12-20. https://doi.org/10.1177/1073110519840480

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AU - McGuire, Amy L.

AU - Majumder, Mary A.

AU - Villanueva, Angela G.

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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

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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.

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

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