Research into the genomics of pathogens plays a vital role in preparing for and responding to global health emergencies. Yet, the rapid sharing of these data often occurs inequitably, where data-contributing regions, particularly those in the Global South, may not benefit from the countermeasures—vaccines, therapies, and diagnostics—their data help to create.
GA4GH REWS and PHA4GE are developing practical guidance points to balance data sovereignty rights with rapid access needs, ensuring that tracking, transparency, and accountability enable equitable benefit sharing in pathogen genomic data use.
The group aims to leverage GA4GHs policy and technology standards by offering flexible, actionable recommendations grounded in human rights principles. Developed through global consultation, this tool works across different regulatory frameworks to ensure data-contributing regions benefit from the countermeasures their data helps create.
Benefits
- Promotes ethical conduct and data sharing practices in human-pathogen genomics research during pandemics and epidemics
- Highlights mechanisms for human-pathogen genomics research benefit sharing during pandemics and epidemics
Target users
Researchers, clinicians, clinical laboratories, data generators, data custodians, data access committees, ethics review committees, data protection authorities, funding agencies, research participants & patient communities, security officers, and research institutes
Announcements
Documents
| Date | Title |
|---|---|
| 8 November 2023 | Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework meeting minutes |
| 8 November 2023 | Ethical Preparedness for Pandemics and Epidemics Framework in-progress documentation |
| 14 September 2023 | Code of Ethics and Community Conduct (CECC) |
Contributors
Don't see your name..?
Get in touch- Anja BedekerPathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide LeadSouth African National Bioinformatics Institute, Public Health Alliance for Genomic Epidemiology (PHA4GE)
- Ashwin BuddenPathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide LeadHarvard Medical School
- Dianne NicholPathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide LeadUniversity of Tasmania, Tasmania, Australia
- Navneet AujlaMount Sinai Hospital, Toronto
- Shakuntala BaichooUniversity of Mauritius
- Gemma BrownWellcome Sanger Institute (WSI), Hinxton, UK
- Rebekah ButterfieldOracle Corporation, Redwood Shores, University of West Florida
- Aida Beatriz Falcon de VargasHospital Vargas de Caracas
- Sam HalabiGeorgetown University, O’Neill Institute for National & Global Health Law, Washington D.C.
- Ashley HobbDNAstack, Toronto
- Liane HughesScience for Life Laboratory (SciLifeLab), Solna
- Jordan Lerner-EllisMount Sinai Hospital, Toronto
- Radhika MahajanMount Sinai Hospital, Toronto
- Colman O'CathailEMBL's European Bioinformatics Institute (EBI), Hinxton, UK
- Swayamsiddha SahooInstitute of Resource Development and Social Management
- Owen SchaeferNational University of Singapore (NUS)
- Donrich ThaldarUniversity of KwaZulu-Natal
- Diya UberoiMcGill University / Université McGill, Montréal, Canada, Centre of Genomics and Policy, Montreal
