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 journalArticlepeer-review

7 Scopus citations

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
JournalJournal of Law, Medicine and Ethics
Volume47
Issue number1
DOIs
StatePublished - Mar 1 2019
Externally publishedYes

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

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