Sharing health-related data: A privacy test?

Stephanie Dyke, Edward S. Dove, Bartha M. Knoppers

Research output: Contribution to journalArticlepeer-review

Abstract

Greater sharing of potentially sensitive data raises important ethical, legal and social issues (ELSI), which risk hindering and even preventing useful data sharing if not properly addressed. One such important issue is respecting the privacy-related interests of individuals whose data are used in genomic research and clinical care. As part of the Global Alliance for Genomics and Health (GA4GH), we examined the ELSI status of health-related data that are typically considered ‘sensitive’ in international policy and data protection laws. We propose that ‘tiered protection’ of such data could be implemented in contexts such as that of the GA4GH Beacon Project to facilitate responsible data sharing. To this end, we discuss a Data Sharing Privacy Test developed to distinguish degrees of sensitivity within categories of data recognised as ‘sensitive’. Based on this, we propose guidance for determining the level of protection when sharing genomic and health-related data for the Beacon Project and in other international data sharing initiatives.
Original languageEnglish
Article number16024
Pages (from-to)1-6
Journalnpj Genomic Medicine
Volume1
Early online date17 Aug 2016
DOIs
Publication statusE-pub ahead of print - 17 Aug 2016

Keywords

  • data publication and archiving
  • genetics research
  • genomics
  • medical ethics

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