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

Research output: Contribution to journalArticle

3 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 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

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ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Cite this

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. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 47(1), 12-20. https://doi.org/10.1177/1073110519840480