Framework for responsible sharing of genomic and health-related data

Provides foundational principles for responsible data sharing

To advance our understanding of human health and disease, we need to share genomic and related health data. The Framework for responsible sharing of genomic and health-related data, or the Framework for short, is guided by human rights, privacy, non-discrimination, and procedural fairness. All products developed by GA4GH build on the foundation of the Framework.

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Benefits

  • Provides a foundation for enabling responsible genomic and related health data sharing
  • Centres human rights in decisions about whether and how to share data

Target users

Researchers, clinicians, clinical laboratories, data generators, data custodians, data access committees, ethics review committees, data protection authorities, funding agencies, developers, research participants & patient communities, security officers, and research institutes

A diagram depicting the foundational principles and aims of the Framework for Responsible Sharing of Genomic and Health-Related Data — which is built upon the Universal Declaration of Human Rights.
Image summary: The principles and aims of the Framework guide responsible sharing of genomic and health data.
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LATEST VERSION
v1.0
Product Lead
  • Bartha Knoppers
Staff Contact

Publications

Community resources

Dive deeper into this product! Sharing genomic and health-related data for biomedical research is vital to ensure continued progress in our understanding of human health and well-being. The challenges raised by international, collaborative research require a framework that brings together a diverse group of people to share principles about data exchange. The goal of the Framework for responsible sharing of genomic and health-related data, or the Framework for short, shares foundational principles and core elements that should guide responsible data sharing. The Framework aims to protect and promote the rights and interests of individuals globally in relation to data sharing; complement laws and regulations on privacy and personal data collection; foster responsible and international data sharing; serve as a dynamic instrument that can respond to changes in the field; and provide overarching principles to be respected in developing legally-binding tools. All standards and policies developed by GA4GH are built upon the foundation laid out in the Framework.


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Related Driver Projects and Organisations

ICGC ARGO
Canadian Distributed Infrastructure for Genomics (CanDIG)
European Joint Programme on Rare Disease (EJP RD)

Don't see your name? Get in touch:

  • Fabiana Arzuaga
    Ministerio de Ciencia, Tecnología e Innovación
  • Dixie Baker
    Martin, Blanck and Associates
  • Knox Carey
    Intertrust Technologies Corporation
  • Esmeralda Casas-Silva
    NIH National Cancer Institute (NCI)
  • Megan Doerr
    Sage Bionetworks
  • Clara Gaff
    Melbourne Genomics Health Alliance
  • Michael Hoffman
    Princess Margaret Cancer Centre
  • Saumya Jamuar
    KK Women's and Children's Hospital
  • Tommi Nyrönen
    CSC – IT CENTER FOR SCIENCE
  • Christine Patch
    Wellcome Connecting Science, Wellcome Genome Campus
  • Sharon Terry
    Genetic Alliance
  • David Torrents
    Barcelona Supercomputing Center
  • Susheel Varma
    Information Commissioner's Office
  • Craig Voisin
    Google LLC
  • Eva Winkler
    German Cancer Research Center (DKFZ) / National Center for Tumor Diseases (NCT)

News, events, and more

Catch up with all news and articles associated with Framework for responsible sharing of genomic and health-related data.

22 Jul 2022
OmicsXchange episode 18: precision health and genomics — an interview with Eric Green
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8 Jul 2021
GA4GH standards in a global learning health system
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24 Sep 2019
Revised GA4GH regulatory and ethics policies emphasize transparency and proportionate safeguards
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