Characterizing the Biomedical Data-Sharing Landscape.

Authors:
Robert Cook-Deegan
Robert Cook-Deegan
Duke University
United States
Barbara A Koenig
Barbara A Koenig
University of California
Patricia A Deverka
Patricia A Deverka
Harvard Medical School
United States
Erika Versalovic
Erika Versalovic
is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan
Amy L McGuire
Amy L McGuire
Baylor College of Medicine
United States
Mary A Majumder
Mary A Majumder
Center for Medical Ethics and Health Policy

J Law Med Ethics 2019 Mar;47(1):21-30

Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. 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 policy-makers.Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. 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. 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.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

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Source
http://dx.doi.org/10.1177/1073110519840481DOI Listing
March 2019
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References

(Supplied by CrossRef)
Article in BMJ
Taichman D.B. et al.
BMJ 2017
Article in Journal of Law, Medicine & Ethics
Villanueva A.G. et al.
Journal of Law, Medicine & Ethics 2019

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