Characterizing the Biomedical Data-Sharing Landscape

Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire, Mary A. Majumder

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)21-30
Number of pages10
JournalThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
Volume47
Issue number1
DOIs
StatePublished - Mar 1 2019
Externally publishedYes

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Information Dissemination
Biomedical Technology
Informatics
Lenses
Biomedical Research

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Cite this

Characterizing the Biomedical Data-Sharing Landscape. / Villanueva, Angela G.; Cook-Deegan, Robert; Koenig, Barbara A.; Deverka, Patricia A.; Versalovic, Erika; McGuire, Amy L.; Majumder, Mary A.

In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, Vol. 47, No. 1, 01.03.2019, p. 21-30.

Research output: Contribution to journalArticle

Villanueva, Angela G. ; Cook-Deegan, Robert ; Koenig, Barbara A. ; Deverka, Patricia A. ; Versalovic, Erika ; McGuire, Amy L. ; Majumder, Mary A. / Characterizing the Biomedical Data-Sharing Landscape. In: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 2019 ; Vol. 47, No. 1. pp. 21-30.
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