Name
Developing tools to facilitate equitable pathogen data sharing
Description

The World Health Organization’s (WHO) adoption of the Pandemic Agreement at the 78th WHA session marks a turning point in how countries share pathogen data during emergencies. Yet despite its passage, critical questions remain about how sharing data from pathogens with pandemic potential might be facilitated, in ways that comply with legal and ethical obligations.

Current analyses that reveal key barriers include: the Nagoya Protocol, which could inadvertently hinder rapid pathogen sharing; fragmentation across databases like GenBank and GISAID which could limit surveillance; and complex biobank contracts which tend to favour bilateral agreements over broader equitable access.

The REWS pandemic group is examining these challenges and exploring whether existing GA4GH tools and technical standards could be used to address them, or whether new tools could be developed. In particular, could meta-data tagging be adapted to the context of transnational sharing of pathogen data to trace data provenance and other relevant pathogen and contextual information from source through the research and development pipeline? This question could have broader relevance, applying equally to other pathogens affecting humans, animals and the environment.

This Connect session will discuss and seek the guidance of the community on: 1) the ethics of pathogen data sharing; 2) legal and other barriers; 3) needs and hopes of the infectious disease community; and 4) the applicability of existing and new tools and standards for meta-data tagging. Ultimately we envision this meeting will help the group develop a tool that can best account for these concerns. Given the cross-sectional nature of this work, we believe the session should be of interest to the broader GA4GH community, PHA4GE, and the Infectious Disease Community of Interest.

Date
Friday, October 10, 2025
Time
4:00 PM - 5:30 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