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

Future of Innovation in Society, School for the (SFIS)

Research output: Contribution to journal › Article › peer-review

17 Scopus citations

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
State	Published - Mar 1 2019

ASJC Scopus subject areas

Issues, ethics and legal aspects
Health Policy

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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

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

Abstract

ASJC Scopus subject areas

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