Name
Leveraging GA4GH’s Tools & Standards to Balance Pathogen Data Sovereignty with Open Access
Description

The COVID-19 pandemic exposed long-standing failures in the efficient and equitable sharing of pathogen genomic sequence data, access to vaccines and other pandemic countermeasures. A persistent ethical and regulatory challenge for public health researchers, policymakers, and pharmaceutical companies is how to balance the Global North's increasing demand for rapid, open-source pathogen data access with Global South and traditional knowledge holders' concerns about protecting genetic data sovereignty (i.e. the rights of communities and nations to govern access, use, and ownership of information associated with their genetic resources). This unresolved tension hampers effective pandemic responses and requires solutions that span the world of technology, policy and ethics. 

Addressing this challenge is now more crucial than ever, as the World Health Organization's Intergovernmental Working Group (IGWG) is negotiating a novel pathogen access and benefit-sharing (PABS) mechanism as the centerpiece of the new WHO Pandemic Agreement. 

The REWS pathogen data sharing group, in collaboration with the Public Health Alliance for Genomic Epidemiology (PHA4GE), aims to create recommendations and tools that leverage GA4GH's technical and policy standards to balance data sovereignty rights with rapid data access within broader aims of equitable benefit-sharing. This session considers how robust tracking and traceability mechanisms are essential to achieving this balance, enabling active and transparent monitoring of pathogen data flow while supporting accountability in benefit distribution. This session brings the GA4GH community together to curate feedback on recommendations and identify which policy and technical tools and standards need to be harnessed or created to address the challenge or promoting both data sovereignty and rapid data sharing. 

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Date
Thursday, October 9, 2025
Time
2:00 PM - 3:30 PM (CEST)
Session type
Group Discussion: particular topic to gather feedback, perspectives, or ideas
Session topic(s)
Clinical & Phenotypic Data Capture, Regulatory & Ethics
Suggested level of familiarity
Level 3: Prior experience or relevant insights to share with the group
Agenda