Characterizing the Biomedical Data-Sharing Landscape.

J Law Med Ethics

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 o

Published: March 2019


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Article Abstract

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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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730647PMC
http://dx.doi.org/10.1177/1073110519840481DOI Listing

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