Data sharing and privacy

Edward S. Dove, Graeme Laurie, Bartha M. Knoppers

Research output: Chapter in Book/Report/Conference proceedingChapter (peer-reviewed)peer-review

Abstract

As various stakeholders in biomedical research and clinical practice laudably move toward a data sharing culture, challenges arise. In particular, privacy and data privacy regulation play a large role in defining the proper contours of global data sharing. In this chapter, we outline the practices and benefits of genomic and clinical data sharing; the dimensions of privacy and data privacy regulation that challenge data sharing; and the ways in which one organization, the Global Alliance for Genomics and Health, is addressing these challenges.
Original languageEnglish
Title of host publicationGenomic and Personalized Medicine
Subtitle of host publicationFoundations, Translation, and Implementation
EditorsGeoffrey Ginsburg, Huntington Willard
Place of PublicationWaltham, MA
PublisherElsevier
Pages143-160
Edition3
ISBN (Electronic)9780128006566
ISBN (Print)9780128006818
DOIs
Publication statusPublished - 9 Dec 2016

Keywords

  • clinical data
  • collaboration
  • data sharing
  • genomics
  • genomic data
  • Global Alliance for Genomics and Health
  • law
  • policy
  • privacy
  • security

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