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Characterizing the Biomedical Data-Sharing Landscape

Authors :
Robert Cook-Deegan
Mary A. Majumder
Barbara A. Koenig
Amy L. McGuire
Angela G. Villanueva
Erika Versalovic
Patricia A. Deverka
Source :
Journal of Law, Medicine & Ethics. 47:21-30
Publication Year :
2019
Publisher :
Cambridge University Press (CUP), 2019.

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.

Details

ISSN :
1748720X and 10731105
Volume :
47
Database :
OpenAIRE
Journal :
Journal of Law, Medicine & Ethics
Accession number :
edsair.doi.dedup.....a934cff5d761c766f622c007c3ecfc7c
Full Text :
https://doi.org/10.1177/1073110519840481