Consent Policy

Provides guidelines for the international sharing of genomic and related health data

Informed consent is a bedrock principle underlying the ethical conduct of research and clinical practice. The Consent Policy aims to guide the sharing of genomic and related health data in a way that respects autonomous decision-making while promoting the common good of international data sharing. Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the Consent Policy aims to maximise responsible and respectful global data sharing through the design of consent forms for data collection.

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  • Provides translatable best practices to implement informed consent
  • Promotes lawful and ethical data sharing consistent with a data subject’s consent, authorisation by competent authorities, and applicable laws

Target users

Ethics review committees, and data protection authorities

The diagram describes five key principles of the GA4GH Consent Policy
Image summary: The principles of the Consent Policy aim to foster transparency and clarity around the research and clinical consent process.

Community resources

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The Consent Policy encompasses data that have been consented to by data donors or their legal representatives, or approved for use by competent authorities in compliance with national and international laws, general ethical principles, and best practices that respect restrictions on downstream uses. This includes recognition that the consent process is situated within and overseen by appropriate governance mechanisms.

This policy is founded on the following basic principles:

  • consent is an open, communicative and, ideally, continuing relationship;
  • there is an intention to share data across clinical or research groups, or jurisdictions and national borders, with appropriate approvals in place;
  • plans for data sharing should be transparent, understandable, and accessible;
  • data donors have a right to not participate in international data sharing or, if participating, are able to withdraw, with the understanding that it may not be possible to retrieve or destroy data once shared;
  • data users and data producers will abide by applicable regulations and ethical norms when seeking and conducting international data sharing.

Don't see your name? Get in touch:

  • Shu Hui Chen
    NIH National Heart, Lung, and Blood Institute (NHLBI)
  • Megan Doerr
    Sage Bionetworks
  • Ramon Felciano
    Digital Alchemy
  • Jaime Guidry Auvil
    NIH National Cancer Institute (NCI)
  • Arthur Hermann
    Kaiser Permanente
  • Joanne Ngeow
    National Cancer Centre Singapore
  • Pilar Nicolas
    Independent Contributor, University of the Basque Country
  • Dina Paltoo
    NIH National Heart, Lung, and Blood Institute (NHLBI)
  • Christine Patch
    Wellcome Connecting Science, Wellcome Genome Campus
  • Amicia Phillips
    KU Leuven
  • Pedro Rondot Radío
    Angel H. Roffo Institute of Oncology
  • Rosalyn Ryan
    Healthfox US Inc
  • Adrian Thorogood
    Terry Fox Research Institute
  • Susan E. Wallace
    University of Leicester
  • 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 Consent Policy.

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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9 Jun 2015
GA4GH 3rd Plenary: policy — consent and privacy and security
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