Characterizing the Biomedical Data-Sharing Landscape

J Law Med Ethics. 2019 Mar;47(1):21-30. doi: 10.1177/1073110519840481.

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Review

MeSH terms

  • Biomedical Research / trends
  • Databases, Nucleic Acid*
  • Humans
  • Information Dissemination / methods*