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

doi:10.1177/1073110519840486

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

J Law Med Ethics. 2019 Mar;47(1):70-87. doi: 10.1177/1073110519840486.

Affiliation

¹ Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policymakers. Dierdre Gilmore, M.A., is a Senior Researcher at the American Institutes for Research. Gilmore earned a MA in Medical Anthropology at the University of London. Jennifer Richmond, M.S.P.H., is a Research Associate at the American Institutes for Research and a doctoral student in the Department of Health Behavior at the University of North Carolina at Chapel Hill (UNC-CH) Gillings School of Global Public Health. Zachary Smith is a Research Assistant at the American Institutes for Research. Rikki Mangrum, M.L.S., is a Senior Research Scientist at the American Institutes for Research. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She serves as Director of the UCSF Program in Bioethics. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors.

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.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
Big Data*
Biomedical Research
California
Community Participation / psychology*
Female
Humans
Information Dissemination / ethics*
Male
Middle Aged
North Carolina
Texas

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

Authors

Affiliation

Abstract

Publication types

MeSH terms

Grants and funding