Global Alliance for Genomics and Health

1️⃣2️⃣ actions to scale up research and clinical genomic data sharing “We can and must do more to enable genomic data sharing…All of us, as funders, policymakers, health system leaders and members of the genomic data community and global genomics ecosystem, have a responsibility to act.” Read our latest press release: https://hubs.li/Q02WdgXk0

👏 Two weeks away: Join GKS for an unconference at ASHG The GA4GH Genomic Knowledge Standards (GKS) Work Stream will hold an unconference at the American Society of Human Genetics (ASHG) meeting on 4 November. The unconference is designed to bring together interested individuals to collaboratively develop tools and features using GKS specifications, which aim to improve how we describe, share, and apply genomic knowledge to improve patient health outcomes. There are a few more spots available! Complete this form to attend the session: https://bit.ly/3NAWElq

Delighted that our publication is out on how we CAN and SHOULD do more to enable genomic data sharing - rdcu.be/dWfsu A fantastic list of co-authors including from Global Alliance for Genomics and Health, Australian Genomics, Genomics England, NHS, All of Us, Our Future Health UK and UK Biobank. And I would argue most importantly, Jillian H.. We discuss: - the start of the art (and the limitations, for example on what federation can actually deliver) - the critical success factors - such as infrastructure and generate coherent data at scale, hold it safely and support analysis... and, critically, engagement with patients, participants and the public And set out twelve actions for important audiences of the paper: - reserch participants - researchers - leaders of genomic cohort programmes - funders - leaders of health policy or those who deliver clinical genomic testing

Contributors of GA4GH, members of GA4GH's National Initiatives Forum, and other collaborators published "A call to action to scale up research and clinical genomic data sharing" in Nature Reviews Genetics on 7 October 2024. The paper, spearheaded by Zornitza Stark (Australian Genomics), David Glazer (Verily), and Richard Scott (Genomics England), emphasises the need to scale global genomic data sharing to enhance research and clinical outcomes in precision medicine. The authors highlight various data-sharing models, including centralised databases and federated approaches, and underscore the importance of cloud-based environments, such as trusted research environments (TREs). While successful examples exist, such as Matchmaker Exchange and UK Biobank, technical, legal, and trust barriers persist. The authors propose twelve actions to address these challenges, urging greater community engagement, adoption of shared standards, and policies that promote cross-cohort analysis to maximise the benefits of genomic data sharing. https://bit.ly/3zUc2G8

🗣️We are searching for new GA4GH Co-leads! Help shape the direction and strategy of the Regulatory & Ethics Work Stream (REWS) or Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream. REWS application: https://bit.ly/3TWI239 Clin/Pheno application: https://bit.ly/4eG7guK Nominations are due 31 October 2024.

Highlights from GA4GH 12th Plenary 🤩 🇦🇺: Melbourne, Australia and online 👥: 650 registrants 🌐: 44 countries 💼: 3 meetings, 65 sessions Big thanks to our co-host, Australian Genomics and all of our funders. 🤝 🇸🇪: 13th Plenary will be in Uppsala, Sweden Read the full Plenary recap here: https://hubs.li/Q02QxqBn0

Thank you to the Victorian Government for being a Diamond Sponsor of GA4GH 12th Plenary. Its generous contribution has played a crucial role in supporting our global meeting, which aims to unite the community to progress responsible sharing of genomic and health data.

GA4GH funders and sponsors make our mission possible: to unlock the power of genomic and health data to advance human health. This week, as we convene the global community to share ideas, perspectives, and knowledge, we want to extend a huge thank you to all our GA4GH funders and sponsors for making GA4GH 12th Plenary a reality.

Data and the use of Genomics in Newborn Screening Alexandra Saltis, Ainsley Newson FRSN, Robin Banks, Margaret Otlowski moderators: Matilda Haas & Karinne Ludlow one of 4 discussions at "Data Justice in #Genomics and Health" Friday 20 September 2024, 8:00am-3:45pm Monash Law City Campus, Melbourne & Zoom in collaboration with the Global Alliance for Genomics and Health (GA4GH) Full Programme ➡️ https://lnkd.in/gdyYxFK5 #HealthLaw Victorian Assisted Reproductive Treatment Authority (VARTA), Sydney Health Ethics, University of Tasmania, Australian Genomics

Welcome to GA4GH 12th Plenary! This week, we are gathering to advance responsible sharing of genomic and related health data, for the benefit of human health. Global collaboration is vital to our efforts, and GA4GH 12th Plenary is a hybrid conference. Learn how you can participate this week, from wherever you are located. On 16 and 17 September, Connect working sessions will held to progress GA4GH product development. Join the conversation virtually: https://bit.ly/4e42gAe On 18 and 19 September, we will host a series of Plenary talks on topics such as Indigenous genomics, emerging technologies, and clinical implementation of genomics. Tune in to our public livestream from the GA4GH YouTube channel: https://bit.ly/4e5y07U On 20 September, the National Initiatives Forum (NIF) will convene projects that are tackling genomic data sharing at scale. Sign up to attend the meeting virtually: https://bit.ly/4e3YM0m