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.
To guide our collaborative, globe-spanning alliance, GA4GH relies on a Standards Steering Committee and an Executive Committee.
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 four 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.
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.
Help us transform the future of genomic data use! See how GA4GH can benefit you — whether you’re using our products, writing our standards, subscribing to a newsletter, or more.
Help create new global standards and frameworks for responsible genomic data use.
Align your organisation with the GA4GH mission and vision.
Solve your real-world data problems with support from this valuable network of global institutions.
Work with like-minded groups committed to better data use in areas like rare disease, cancer, and infectious disease.
Share your thoughts on all GA4GH products currently open for public comment.
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.
Learn more about upcoming GA4GH events. See reports and recordings from our past events.
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Read news, stories, and insights from the forefront of genomic and clinical data use.
Attend an upcoming GA4GH event, or view meeting reports from past events.
See new projects, updates, and calls for support from the Work Streams.
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24 Sep 2019
The GA4GH Regulatory and Ethics Work Stream (REWS) has undertaken a comprehensive review of its policy frameworks and guidance documents to ensure they meet the demands of the current era of genomic medicine and research. As part of this review, REWS has released updated versions of the GA4GH Consent Policy and the GA4GH Data Privacy and Security Policy and reaffirmed the Framework for Responsible Sharing of Genomic and Health-Related Data.
The Regulatory and Ethics Work Stream (REWS) of the Global Alliance for Genomics and Health (GA4GH) has recently undertaken a comprehensive review of its policy frameworks and guidance documents to ensure they meet the demands of the current era of genomic medicine. As part of this review, REWS has released updated versions of the GA4GH Consent Policy and the GA4GH Data Privacy and Security Policy. The team also reviewed the 2014 Framework for Responsible Sharing of Genomic and Health-Related Data and reaffirmed its suitability for the current regulatory climate.
“International regulatory developments and public engagement increasingly emphasize that responsible and respectful data sharing depends on strong privacy and security protection, and high levels of transparency with patients and participants,” said REWS Manager Adrian Thorogood, who coordinated the GA4GH policy revisions. “We decided to review GA4GH policies to strengthen these aspects and ensure the policies meet the needs of the international genomics community.”
Established in 2014 alongside the launch of GA4GH, REWS is the international thought leader on responsible and ethical genomic data sharing. To date, REWS has published four policies that build upon the foundational principles laid out in the Framework.
The revised Data Privacy and Security Policy provides guidance on protecting and promoting the security, integrity, and availability of data and services, and the privacy of individuals, families, and communities whose data are processed. The Consent Policy aims to guide international data sharing in a way that respects autonomous decision making while promoting the common good. Both policies were originally released in June 2015.
Since then, developments in data protection law and genetic privacy as well as new social challenges have arisen. These include the coming into force of the European Data Protection Regulation in May 2018—which has global implications—and the Council of Europe’s Recommendation on the protection of health-related data in March 2019.
“There is also a generally increasing need to share data collected from patients in clinical settings with researchers in many different arenas,” said Susan Wallace, who led the revision of the Consent Policy. “At the same time, healthy individuals are uploading their data to online platforms such as genealogy websites, sometimes unaware of how those data will be used. In general, we’re seeing a continued move towards giving individuals more information on and greater say in how their data are used. We wanted GA4GH policy guidance to reflect this.”
Edward Dove, a lecturer in health law and regulation at the University of Edinburgh, led the revision of the Data Privacy and Security Policy, which is intimately linked to the GA4GH Security Technology Infrastructure. “Developments in other GA4GH standards, such as the authentication and authorization infrastructure and new automated approaches for recording and tagging consent, also demanded these updates,” said Dove.
“When updating both policies, we wanted them to be in harmony with the other existing GA4GH deliverables and to remove any redundancies, inconsistencies and confusing elements based on GA4GH member feedback. The GA4GH member community was tremendous in providing helpful and insightful feedback during the rounds of policy revision,” added Dove.
All GA4GH policy work takes the unique approach of viewing data sharing as a means of activating the human right to share in the benefits of scientific advancement.
“With tens of millions of genomes expected to be sequenced within the coming decade for clinical and research purposes, the scientific community has an unprecedented opportunity to advance our global understanding of human biology and improve human health and medicine,” said Prof. Bartha Knoppers, current and founding chair of the REWS and Director of the Centre for Genomics and Policy at McGill University. “As the field develops, we in REWS are thrilled to provide guidance that will support the human right to benefit from this work.”