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.
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All GA4GH standards, frameworks, and tools follow the Product Development and Approval Process before being officially adopted.
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2 Nov 2018
In September, members of the GA4GH Regulatory and Ethics Work Stream (REWS) published a special issue of the journal Human Genetics, focused on genomic data sharing. The series of review articles includes an overview of the regulatory frameworks that have come to bear in seven different countries.
In September, members of the GA4GH Regulatory and Ethics Work Stream (REWS) published a special issue of the journal Human Genetics, focused on genomic data sharing. The series of review articles includes an overview of the regulatory frameworks that have come to bear in seven different countries (Canada, Australia, United States, China, Germany, South Korea, and the United Kingdom) as well as a discussion of current international data norms. An opening editorial cites two international efforts — GA4GH and the International Cancer Genome Consortium — which demonstrate how this regulatory ecosystem “is being constructed by the scientists themselves.”
The articles — authored by policy makers and researchers working on the ground in the respective countries — lay out the cultural distinctions and legal interpretations that have led to a diverse international policy landscape.
“Obstacles to international data sharing often include reference to (or hiding behind) legal barriers or claiming lack of clarity in their interpretations so as to to stall or thwart genomic data sharing,” said Bartha Knoppers, Director of the Centre of Genomics and Policies (CGP) at McGill University, REWS Co-Lead, and co-editor of the special issue. “After examining international genomic data sharing, opportunities the situation does not look so bleak.”
While the way health and genomic data are treated varies greatly from one country to the next, there is significant reliable guidance across the globe, said Yann Joly, CGP Research Director and co-editor of the special issue with Knoppers. For example, some countries, such as Canada, apply generic privacy laws to genetic data, whereas other countries have no one but several laws specific to genetic data that vary by use type.
Some countries have developed extensive privacy frameworks to guide genomic data sharing. “This is especially true in Asia where the concept of data sharing is new,” said Joly, who co-authored a review of the South Korean regulation. “There they consider data as proprietary more than they do in places like Canada or the US.” The distinction he said, has to do with the cultural perception of data in unique jurisdictions and results in policy frameworks that diverge both in content as well as approach. Despite regulatory differences, harmonizing of how researchers govern genetic data across countries remains achievable.
“The field of data sharing and privacy protection has gotten extremely complex in the era of big data,” said Joly. “There’s a need that may not have been there before for interdisciplinary and multicultural debate and reflection. Policy makers used to be able to legislate on health privacy in isolation; now we must work together to strike a balance between privacy and advancing research to cure patients.”
“The European GDPR has been a focus of recent debate over harmonizing global privacy frameworks,” said Adrian Thorogood, REWS manager and an academic associate at CGP. “The GDPR strengthens the protection of personal data, and in particular restricts international transfer where other jurisdictions do not provide comparable legal protections.” To address persist uncertainty within the global data sharing community, the REWS launched the GDPR and International Health Data Sharing Forum. A Primer addressing 10 points to consider has been released, and is accompanied by monthly briefs.
The GA4GH REWS is doing exactly that, bringing together stakeholders from around the globe and across multiple domains to develop tools and best practices that are internationally applicable. They are also working to harmonize policy and governance across different regulatory jurisdictions in order to develop recommendations with global relevance. This work relies on a solid understanding of the various legal and regulatory norms around the world as well as where common ground exists between them.
“The future of genomic data sharing depends on a creative yet responsible interpretation of existing legal norms in order to ensure that we truly respect the human right of everyone to benefit from scientific progress and its applications,” said Knoppers.