About us
Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Our Strategic Road Map defines strategies, standards, and policy frameworks to support responsible global use of genomic and related health data.
Discover how a meeting of 50 leaders in genomics and medicine led to an alliance uniting more than 5,000 individuals and organisations to benefit human health.
GA4GH Inc. is a not-for-profit organisation that supports the global GA4GH community.
The GA4GH Council, consisting of the Executive Committee, Strategic Leadership Committee, and Product Steering Committee, guides our collaborative, globe-spanning alliance.
The Funders Forum brings together organisations that offer both financial support and strategic guidance.
The EDI Advisory Group responds to issues raised in the GA4GH community, finding equitable, inclusive ways to build products that benefit diverse groups.
Distributed across a number of Host Institutions, our staff team supports the mission and operations of GA4GH.
Curious who we are? Meet the people and organisations across six continents who make up GA4GH.
More than 500 organisations connected to genomics — in healthcare, research, patient advocacy, industry, and beyond — have signed onto the mission and vision of GA4GH as Organisational Members.
These core Organisational Members are genomic data initiatives that have committed resources to guide GA4GH work and pilot our products.
This subset of Organisational Members whose networks or infrastructure align with GA4GH priorities has made a long-term commitment to engaging with our community.
Local and national organisations assign experts to spend at least 30% of their time building GA4GH products.
Anyone working in genomics and related fields is invited to participate in our inclusive community by creating and using new products.
Wondering what GA4GH does? Learn how we find and overcome challenges to expanding responsible genomic data use for the benefit of human health.
Study Groups define needs. Participants survey the landscape of the genomics and health community and determine whether GA4GH can help.
Work Streams create products. Community members join together to develop technical standards, policy frameworks, and policy tools that overcome hurdles to international genomic data use.
GIF solves problems. Organisations in the forum pilot GA4GH products in real-world situations. Along the way, they troubleshoot products, suggest updates, and flag additional needs.
NIF finds challenges and opportunities in genomics at a global scale. National programmes meet to share best practices, avoid incompatabilities, and help translate genomics into benefits for human health.
Communities of Interest find challenges and opportunities in areas such as rare disease, cancer, and infectious disease. Participants pinpoint real-world problems that would benefit from broad data use.
The Technical Alignment Subcommittee (TASC) supports harmonisation, interoperability, and technical alignment across GA4GH products.
Find out what’s happening with up to the minute meeting schedules for the GA4GH community.
See all our products — always free and open-source. Do you work on cloud genomics, data discovery, user access, data security or regulatory policy and ethics? Need to represent genomic, phenotypic, or clinical data? We’ve got a solution for you.
All GA4GH standards, frameworks, and tools follow the Product Development and Approval Process before being officially adopted.
Learn how other organisations have implemented GA4GH products to solve real-world problems.
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Help create new global standards and frameworks for responsible genomic data use.
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Want to advance both your career and responsible genomic data sharing at the same time? See our open leadership opportunities.
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Solve real problems by aligning your organisation with the world’s genomics standards. We offer software dvelopers both customisable and out-of-the-box solutions to help you get started.
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11 Feb 2022
The GA4GH Policy on Clinically Actionable Genomic Research Results aims to create a framework for responsibly informing study participants of the health risks embedded in their genomes.
There are potential medical benefits to the millions of individuals who are participating in genomics research. If identified genetic risks can be treated in the clinic, such knowledge could be life-changing. But many research programmes lack clear guidance on if, when, and how to return clinically-actionable genomic results to their participants in an ethical manner.
“There has been a lot of ink spilled on this topic,” said Dr. Anna Lewis, a Fellow-in-Residence at the Edmond J. Safra Center for Ethics at Harvard University. “However, there is an emerging ethical and legal consensus supporting the return of clinically actionable results.”
Together with Dr. Robert Green, Dr. Bartha Knoppers, and an international group of experts, Lewis led the development of the GA4GH Policy on Clinically Actionable Genomic Research Results, the first international policy on this topic. The policy creates minimal international standards that all research projects that sequence individuals should follow. The knowledge that the initial researchers responsibly considered the return of results facilitates data sharing, the core purpose of the GA4GH.
“This has been the most contentious of all the Regulatory and Ethics Work Stream outputs, and the hardest to reach consensus. We had a huge number of comments from GA4GH members and the public,” Lewis said.
For instance, while most researchers agree on the need to return results to study participants, barriers such as high costs and limited resources impede accountability and transparency of doing so.
After many hours of debate and revision, the GA4GH REWS came to a consensus on six points that it recommends new research programmes consider when establishing their return of results policies. The framework states that researchers should:
With regulatory variations across jurisdictions, individual research projects need to customize their return of results policies for their unique circumstances. The combination of the third and fourth policy points, which highlight the relevance of local clinical standards and of community engagement, enables this international policy to be responsive to differences in local contexts.
“In the research world, we often lose track of the fact that the columns of data are humans who are messy and complicated with varying contexts that determine the relevance of their genetic information,” Lewis said. “This in turn means a one size fits all approach is not going to work. We need something that is going to reflect the complexity of the relationship between each of us and our own genetics.”
More information about the policy is linked below: