Advancing the dialogue on global health data sharing: highlights from GA4GH 13th Plenary

10 Oct 2025

The global genomics community gathered in Uppsala, Sweden for the GA4GH 13th Plenary meeting, co-hosted by SciLifeLab, from 6 to 10 October to cultivate a dialogue around scaling genomic and health data sharing to enhance human health outcomes around the world.

By Jaclyn Estrin, GA4GH Senior Science Writer

Nearly 300 members of the global genomics community gathered in Uppsala, Sweden for the GA4GH 13th Plenary meeting this week, with another 300+ people joining online.

GA4GH has a mission of accelerating progress in human health by establishing a shared global approach to responsible, broad, and democratised use of genomic and health data. 

Genomics holds the key to unlocking information about people’s DNA and underlying links to genetic diseases. However, researchers and healthcare professionals cannot fully realise the potential of genomic data if they only have access to a small subset available through their institutions alone. There is a wealth of genomic data that exists all around the world, and standardised approaches to accessing, storing, using, and sharing this data can facilitate gene discovery, quicker diagnosis, and more personalised patient care at a global scale.

The GA4GH Plenary meetings are crucial forums to convene people from across a wide variety of sectors — including research, clinical practice, healthcare, government, and academia — to discuss the path forward for widespread genomic and health data sharing.

“The annual GA4GH Plenary meeting is critical to deeply engage with different regions of the world to show the collective benefit of genomic data sharing,” said Heidi Rehm, Chair of GA4GH. Throughout the meeting, members of the global genomics community share their experiences using GA4GH standards, discuss the benefits of implementation, and brainstorm how we continually improve these standards over time. It is important to bring the community together so we can keep pace with major advances in genomics and health to enable downstream research and clinical benefits.”

The 13th Plenary meeting was made possible through the support and dedication of the meeting Co-Host, SciLifeLab — a collaborative effort between Swedish universities and a national research infrastructure to advance life science research — with on-location coordination led by the SciLifeLab Data Centre team. A programme committee, under the direction of the Chair, Per Sikora (Genomic Medicine Sweden), and Local Plenary Host, Johan Rung (Uppsala University), guided the development of a meaningful Plenary agenda.

“SciLifeLab is very proud to co-host the GA4GH 13th Plenary and Connect meetings in Uppsala,” said Rung, Head of SciLifeLab Data Centre. “Sweden and our Nordic neighbours participate very actively in the global community to develop technical standards and policy frameworks. These are key components in genomic medicine and data-driven research with real impact for patients worldwide. It is the first time this meeting is held in the Nordics.”

Sikora, Chair of informatics and infrastructure, Genomic Medicine Sweden, added, “GA4GH is our most important international collaboration. Global standards will be essential for data sharing moving forward both for large cohort research and for our healthcare system.” 

The Plenary meeting, held during the first two days of the conference, was kicked off with opening remarks from SciLifeLab Co-Director, Mia Phillipson, who welcomed participants from 43 different countries to Uppsala, home to Uppsala University, Sweden’s oldest university. 

“As GA4GH is all about data and standards, I’d like to take the opportunity to remind you that setting standards in life science actually started here in Uppsala a very long time ago,” Phillipson said. “This is the home of Carl Linnaeus, who created Systema Naturae, and introduced a common language for describing nature. Uppsala University was founded in 1477 and has a long tradition of pioneering research, from Anders Celsius and Arne Tiselius to Svante Pääbo. It’s a fitting place to gather as we continue shaping global standards for genomics and life science.”

The Plenary meeting featured an international line-up of speakers, delivering keynotes and short talks, and participating in thought-provoking panels. The meeting was headlined by six keynote speakers: Patrick Tan (Precision Health Research, Singapore), Annemieke Ålenius (Swedish eHealth Network, Sweden), Nara Sobreira (John Hopkins University, United States), Carolina Vitabäck (Pediatric Cancer Foundation,Sweden), Richard Rosenquist Brandell (Genomic Medicine Sweden; Karolinksa Institutet, Sweden), and Ewan Birney (European Molecular Biology Laboratory, United Kingdom).

The keynotes, talks, and panels shed light on global and regional perspectives on health data sharing with an emphasis on establishing trust as the foundation of genomic medicine. Harmonised frameworks will enable responsible integration of genomic data into clinical practice and routine patient care.

In addition, many sessions explored how the healthcare ecosystem is striving to keep pace with emerging technologies, such as artificial intelligence and machine learning. 

There was a resounding reminder for the GA4GH community that genomic data standards and tools that are currently in development should be accessible, customisable, and of value to communities across a wide array of geographic and cultural contexts. This requires a stronger focus on putting the “global” into the Global Alliance for Genomics and Health and understanding diverse needs.

In the coming months, GA4GH plans to establish regional hubs and strengthen wide-reaching engagement and outreach activities. This will be accompanied by the development of training materials and resources that facilitate product implementation at scale.

The Plenary meeting was followed by three days of Connect working meetings, where attendees participated in collaborative workshops to advance the development of products and frameworks that make data sharing possible.

On the first day of Connect, representatives from national genomic data initiatives from around the globe convened within the National Initiatives Forum (NIF). This “NIF Day” was one of the most geographically diverse gatherings of the forum, with representatives from 25 different countries. 

The NIF meeting highlighted the importance of shared learning across national genomic programmes, with talks spotlighting national strategies from 10 different national initiatives. There were also discussions focused on assessing one’s maturity in rolling out genomics in healthcare, incorporating community-led and Indigenous leadership in the development of genomic programmes, and exploring available federated tools, including gnomAD and the Gene Curation Coalition. 

Going forward, NIF will strengthen connections across initiatives to share toolkits and resources through steering groups, workshops, and collaborative projects.

During each day of the Connect meeting, both speakers and participants shared implementation challenges openly and transparently, through a strong spirit of knowledge exchange. Through the presentation of case studies, accompanied by many interactive breakout sessions, participants brainstormed collective solutions in real time.

“Building on the inspiration and momentum from Plenary, the need is clear from the community — we must come together to drive forward implementation and associated resources,” said Sasha Siegel, GA4GH Chief Product Officer. “From starter kits to use-case specific tools, clear documentation and direct consultation with implementers, there is so much we can do to deliver our vision of truly interoperable systems and data for global health benefit.”

Throughout Plenary, NIF Day, and Connect, participants shared a resonating optimism that health data sharing can facilitate the advancement of gene discovery, enable personalised medicine, and ultimately, enhance patient care.

A full meeting report summarising key highlights, takeaways, and action items from the NIF and Plenary meetings, and the October Connect working sessions, will be released shortly. Video recordings will be made available on the GA4GH YouTube page following the publication of the meeting report.

Regular Work Stream, product team, and Community of Interest meetings occur throughout the year to drive product development and greater uptake and implementation of GA4GH products. Learn more about how to get involved on the GA4GH website, and subscribe to the organisation’s weekly newsletter for further updates.

As 13th Plenary comes to a close, the community can look forward to gathering again in 2026 at the GA4GH Connect meeting (14 to 17 April 2026), co-hosted by McGill University in Montreal, Canada, and at 14th Plenary (28 September to 2 October 2026), co-hosted by Precision Health Research, Singapore (PRECISE) in Singapore.

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A special thank you to the 13th Plenary programme committee members: 

Per Sikora (Programme Committee Chair; Genomic Medicine Sweden, Sweden), Johan Rung (Science for Life Laboratory, Sweden), Lene Cividanes (Danish National Genome Centre, Denmark), Mallory Freeberg (EMBL’s European Bioinformatics Institute, United Kingdom), Oliver Hofmann (University of Melbourne, Australia), Ilkka Lappalainen (CSC – IT Center for Science, Finland), Hamdi Mbarek (Qatar Precision Health Institute, Qatar), Mamana Mbiyavanga (University of Cape Town, South Africa), Shih Wee Seow (Precision Health Research, Singapore), Lindsay Smith (Hospital for Sick Children, Canada), and GA4GH representatives: Heidi Rehm (GA4GH Chair), Peter Goodhand (GA4GH CEO), Angela Page, Justina Chung, and Arwa Farrukh.  

Thank you to the generous funders and sponsors who helped to make GA4GH 13th Plenary possible.