Policy Brief: The Norwegian Federated European Genome Phenome Archive (FEGA)

Launched in 2022, the Norwegian Federated European Genome Phenome Archive (FEGA) is designed to facilitate the secure and lawful sharing of sensitive human omics data. It capitalizes on technology initially developed by the European Genome-phenome Archive (EGA) and benefits from strong collaboration with ELIXIR, the European life science data infrastructure. EGA reflects community-driven standards for sensitive data management, incorporating protocols established by the Global Alliance for Genomics and Health (GA4GH). FEGA employs a federated data access architecture—sensitive data is securely stored within respective local or national jurisdictions, while a centralized portal facilitates the discovery of specific datasets world wide. This arrangement addresses theprimary challenges of managing large volumes of human omics data and the associated privacy concerns, by limiting the exposure of sensitive data and allowing for controlled, secure access on a need-to-know basis while providing generalmetadata about the scope of the datasets.FEGA is managed by ELIXIR Norway. The access to each study is controlled by its Data Access Committee (DAC). The DAC is responsible for managing data access requests and ensuring that the release of data is in accordance with the GDPR.By February 2024, the FEGA network expanded to include seven European national nodes, with numerous other national partners actively working to set up their nodes. This expansion is part of a larger vision to foster a global resource enabling robust discovery and access to sensitive human omics data. This network will significantly boost the capacity for conducting large-scale, multi-national disease research,thereby improving patient outcomes.