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

Published online by Cambridge University Press:  01 January 2021

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.

Type
Symposium Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2019

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One deliberant from California did not respond to this question. Therefore, percentages for California for this question are calculated using N = 21. The totals for this characteristic are calculated using N = 74.Google Scholar
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