Federated EGA in the European and Global Human Data Ecosystem
This Federated EGA in the European and Global Human Data Ecosystem white paper sets out our vision for the future role of Federated EGA (FEGA) in supporting secure, responsible and FAIR reuse of controlled-access human data. It describes how FEGA has developed into an operational federation that combines local data sovereignty, shared standards, coordinated governance and interoperable services. The paper considers FEGA's relationship with ELIXIR, the 1+ Million Genomes initiative, the future Genome EDIC and the European Health Data Space, and highlights opportunities for these infrastructures and initiatives to work together. It also outlines areas where FEGA can continue to contribute and innovate, including international collaboration, multi-omics data sharing, secure processing environments, AI/ML-ready data, and federated analysis. Our hope is that with continued investment in FEGA's infrastructure, community and coordination, we can help sustain existing capabilities, support further innovation and strengthen the wider European and global human data ecosystem.
Authors
- Graziano Pesole (ORCID: https://orcid.org/0000-0003-3663-0859)
- Serena Scollen (ORCID: https://orcid.org/0000-0002-9311-1337)
- Błażej Marciniak (ORCID: https://orcid.org/0000-0003-1571-1473)
- Helen E. Parkinson (ORCID: https://orcid.org/0000-0003-3035-4195)
- Riku Riski
- Teresa D’Altri (ORCID: https://orcid.org/0000-0002-8146-5365)
- Jordi Rambla (ORCID: https://orcid.org/0000-0001-9091-257X)
- Mallory Freeberg (ORCID: https://orcid.org/0000-0003-2949-3921)
- Amy J. Curwin (ORCID: https://orcid.org/0000-0003-1086-2483)
- Arcadi Navarro (ORCID: https://orcid.org/0000-0003-2162-8246)
- Grant McNair (ORCID: https://orcid.org/0009-0006-1362-0681)
- Claudio Lo Giudice (ORCID: https://orcid.org/0000-0003-3609-8938)
- Gabriele Rinck (ORCID: https://orcid.org/0000-0001-6428-3431)
- Tommi Nyrönen (ORCID: https://orcid.org/0000-0002-5569-5183)
- Ana T. Freitas (ORCID: https://orcid.org/0000-0002-2997-5990)
- Juan Arenas Márquez (ORCID: https://orcid.org/0000-0001-5497-8045)
- Oliver Stegle (ORCID: https://orcid.org/0000-0002-8818-7193)
- Steven J.M. Jones (ORCID: https://orcid.org/0000-0003-3394-2208)
- Anna Hagwall
Institutions
- Instituto de Engenharia de Sistemas e Computadores Investigação e Desenvolvimento (PT)
- BC Cancer Agency (CA)
- European Bioinformatics Institute (GB)
- Universitat Pompeu Fabra (ES)
- German Cancer Research Center (DE)
- Heidelberg University (DE)
- University of Łódź (PL)
- Pasqual Maragall Foundation (ES)
- European Molecular Biology Laboratory (FR)
- Barcelonaβeta Brain Research Center (ES)
- Canada's Michael Smith Genome Sciences Centre (CA)
- Centre for Genomic Regulation (ES)
- European Molecular Biology Laboratory (DE)
- Institute of Biomembranes, Bioenergetics and Molecular Biotechnologies (IT)
- CSC - IT Center for Science (Finland) (FI)
- European Molecular Biology Laboratory (DE)
- National Research Council (IT)
- Instituto Superior Técnico (PT)
- ELIXIR (GB)
- National Bioinformatics Infrastructure Sweden
- University of Bari Aldo Moro (IT)
Publication Details
- Journal
- Zenodo (CERN European Organization for Nuclear Research)
- Published
- 2026-10-05
- DOI
- https://doi.org/10.5281/zenodo.23157796
- Primary Topic
- Research Data Management Practices
- Type
- article
- Field-Weighted Citation Impact
- 0.00