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.
Speak directly to the global genomics and health community while supporting GA4GH strategy.
Be the first to hear about the latest GA4GH products, upcoming meetings, new initiatives, and more.
Questions? We would love to hear from you.
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.
Read academic papers coauthored by GA4GH contributors.
Listen to our podcast OmicsXchange, featuring discussions from leaders in the world of genomics, health, and data sharing.
Check out our videos, then subscribe to our YouTube channel for more content.
View the latest GA4GH updates, Genomics and Health News, Implementation Notes, GDPR Briefs, and more.
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4 Feb 2022
This GA4GH Community Post is the ninth in our monthly series featuring individuals from across our organization. This month we are turning the spotlight on Kristina Kékesi-Lafrance!
This GA4GH Community Post is the ninth in our monthly series featuring individuals from across our organization. This month we are turning the spotlight on Kristina Kékesi-Lafrance! Kékesi-Lafrance is a lawyer and Masters of Law (LLM) candidate in Bioethics at the McGill Faculty of Law. While she completed her undergraduate studies at Sherbrooke University Law Faculty, Kékesi-Lafrance also studied abroad for a semester at the Law Faculty of Université Libre de Bruxelles. After successfully passing her bar exams, Kékesi-Lafrance was called to the Quebec Bar in July 2018. She practiced as a lawyer in an international firm for over a year before joining the Centre of Genomics and Policy (CGP). As an Academic Associate, Kékesi-Lafrance is interested in how law and ethics interact in the field of genomics. She is involved in different projects in both clinical and research ethics as well as international privacy laws and biobanking.
What current projects are you working on?
As a Policy Developer for REWS, I work on a variety of projects. Mainly, I am involved in the GA4GH Consent Task Force, for which I act as the coordinator. This international working group has undertaken the ambitious task of harmonizing genomic consent clauses in both the research and clinical settings. We have developed sampled language for genomic research, large-scale initiatives (biobanking and population studies), and we are currently finalizing consent clauses for whole-genome sequencing in clinical care. Across these categories, we also provide the international genomic community with familial and pediatric consent clauses. Of course, the language we develop, although respectful of their respective ethical-legal context, needs to be adapted to local regulations and cultural norms. Nonetheless, we hope to offer a universal language foundation for those drafting consent forms in genomics.
What is your favorite thing about the GA4GH Community and why?
I am deeply inspired by the multidisciplinary nature of our community. As a lawyer, working with scientists, policymakers, doctors, and any other non-lawyer expert is a true privilege. I am curious by nature, which makes this working environment a wonderful fit. Working with so many experts in so many different fields is also very humbling. It makes us realize that none of our work would be possible without our shared expertise. Necessarily, collaboration is one of our strongest tools. It is also worth mentioning that the pandemic didn’t affect our collaborators’ commitment. On the contrary, even if spread thinner than before, they pursue their involvement with GA4GH as part of their broader commitment to global health. Of course, we needed to adapt, but we are used to working virtually with people across many time zones. Seeing our community come together, stronger than ever, even within a global pandemic was extremely inspiring.
What advice would you give to individuals seeking to get more involved with GA4GH?
Give it a try! My answer above may seem intimidating for some, at first, but it actually translates how much enthusiasm we have learning daily together. Given that we all have very different backgrounds, we are always outside of our comfort zones, which makes our work very exciting. Everyone is also extremely generous with their time and loves to help others understand concepts they are not familiar with. Since we build our community on others and rely on external expertise to be able to do the work we do, newcomers are always very welcome. We always seek comments/feedback from the public on the tools we develop. We want to make sure we didn’t miss anything while developing our standards and that all perspectives were considered. So please join the conversation!