AI & Computingarticle2026-10-05

Federated EGA in the European and Global Human Data Ecosystem

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Abstract

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.

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View paper (DOI)Open access versionOpenAlexZenodo (CERN European Organization for Nuclear Research)Published 2026-10-05

Authors: Teresa D’Altri, Juan Arenas Márquez, Amy J. Curwin, Ana T. Freitas, Anna Hagwall, Steven J.M. Jones, Claudio Lo Giudice, Błażej Marciniak, Grant McNair, Arcadi Navarro, Tommi Nyrönen, Helen E. Parkinson, Graziano Pesole, Gabriele Rinck, Riku Riski, Serena Scollen, Oliver Stegle, Jordi Rambla, Mallory Freeberg

Institutions: University of Bari Aldo Moro, Heidelberg University, German Cancer Research Center, Universitat Pompeu Fabra, National Research Council, University of Łódź, European Bioinformatics Institute, Instituto de Engenharia de Sistemas e Computadores Investigação e Desenvolvimento, European Molecular Biology Laboratory, Pasqual Maragall Foundation, Barcelonaβeta Brain Research Center, Centre for Genomic Regulation, BC Cancer Agency, CSC - IT Center for Science (Finland), Instituto Superior Técnico, European Molecular Biology Laboratory, Canada's Michael Smith Genome Sciences Centre, European Molecular Biology Laboratory, National Bioinformatics Infrastructure Sweden, ELIXIR, Institute of Biomembranes, Bioenergetics and Molecular Biotechnologies