Framework for Responsible Sharing of Genomic and Health-Related Data

  • Published: September 10, 2014
  • Last updated: September 12, 2014

About this document

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The Framework for Responsible Sharing of Genomic and Health-Related Data provides a principled and practical framework for the responsible sharing of genomic and health-related data. It contains foundational principles and core elements for responsible data sharing, and is guided by human rights, including privacy, non-discrimination, and procedural fairness.



Work Product Type:
Working Group(s):
Regulatory and Ethics


  • Bartha Knoppers , Centre of Genomics and Policy , Montreal, Canada - Chair
  • Kazuto Kato , Osaka University, Graduate School of Medicine , Osaka, Japan
  • Partha Majumder, National Institute of Biomedical Genomics, Kalyani, India - Co-Chair
  • Martin Bobrow , University of Cambridge , Cambridge, United Kingdom
  • Paul Burton, University of Bristol, United Kingdom
  • Don Chalmers, University of Tasmania, Australia
  • Thomas Hudson , AbbVie , Redwood City, United States
  • Terry Kaan, University of Hong Kong, Hong Kong
  • Michael Parker, University of Oxford, United Kingdom
  • Jennifer Stoddart, former Privacy Commissioner of Canada, Canada
  • Sharon Terry, Genetic Alliance, Washington, D.C., United States
  • David Townend, Maastricht University, the Netherlands
  • Jantina de Vries, University of Cape Town, South Africa
  • John Wilbanks, Sage Bionetworks, Washington, D.C., United States


  • Code of Conduct
  • Data Sharing
  • Bioethics
  • Data
  • Genomics Policy
  • Policy
  • Genomics
  • Clinical Data
  • Genomic Data
  • Law
  • Governance
  • Health
  • Health Data
  • Open Access
  • Open Science
  • Benefit Sharing
  • Equity
  • International Researcher
  • Collaboration
  • Privacy
  • Data Protection
  • Confidentiality