Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Zachary Smith, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder, Amy L. McGuire

Research output: Contribution to journalArticle

Abstract

A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Original languageEnglish (US)
Pages (from-to)70-87
Number of pages18
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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Governing Board
Computer Security
Information Dissemination
Privacy
Public Policy
Ethics
Research

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Cite this

Hopeful and Concerned : Public Input on Building a Trustworthy Medical Information Commons. / Deverka, Patricia A.; Gilmore, Dierdre; Richmond, Jennifer; Smith, Zachary; Mangrum, Rikki; Koenig, Barbara A.; Cook-Deegan, Robert; Villanueva, Angela G.; Majumder, Mary A.; McGuire, Amy L.

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. 70-87.

Research output: Contribution to journalArticle

Deverka, Patricia A. ; Gilmore, Dierdre ; Richmond, Jennifer ; Smith, Zachary ; Mangrum, Rikki ; Koenig, Barbara A. ; Cook-Deegan, Robert ; Villanueva, Angela G. ; Majumder, Mary A. ; McGuire, Amy L. / Hopeful and Concerned : Public Input on Building a Trustworthy 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. 70-87.
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