Summary

• The first datasets in the FEGA network, contributed by national nodes in Poland, Norway, and Sweden, are now accessible
• FEGA aims to enhance the security and accessibility of sensitive human omics data across borders, using a federated data access model to ensure data privacy, while enabling global scientific collaboration
• The network supports the broader goal of accelerating disease research and patient care improvements

In February 2024, the human omics data community achieved an important milestone. The first datasets are now publicly-available in the Federated European Genome-phenome Archive (FEGA). These foundational datasets – hosted by national nodes in Poland, Norway, and Sweden – are discoverable in the EGA portal and accessible according to national laws.

The datasets include:

• From FEGA Poland: The Genomic Map of Poland 
• From FEGA Norway: CRCbiome: Gut metagenome of Norwegian screening participants using FIT sampling 
• Also from FEGA Norway: Single cell transcriptomics in expanded Tregs of APS-1 patients 
• From FEGA Sweden: A Combined Omics and Tissue Biobank for Paediatric Cancers 

The establishment of these datasets represents a significant step towards achieving the broader objectives of the FEGA; to facilitate the sharing of high-quality human genomic and phenotypic data across borders. 

“The value for users is twofold; it becomes easier to make data available securely compared to storing data locally, and data becomes easier to find for other researchers,” said Anna Hagwall, Project Manager and Head of Human Data at FEGA Sweden, NBIS. “The possibility of reuse improves the chances of verifying scientific discoveries and reaching groundbreaking conclusions that benefit the research community and later also patients.”

About Federated EGA

FEGA was launched in 2022 as a network to store and lawfully share sensitive human omics data safely. It relies on the technology originally developed by the EGA and support from ongoing collaborations with ELIXIR – a European life sciences infrastructure. FEGA has contributed to and benefitted from the implementation of community standards for sensitive data management including those developed by the Global Alliance for Genomics and Health (GA4GH). 

What is omics data?

Data generated from high-throughput technologies used to study the different “omes” of an organism, such as the genome.

“The FEGA concept and the development of the Nordic FEGA nodes have been made possible thanks to several projects coordinated by Nordic e-Infrastructure Collaboration (NeIC),” said Kjell Petersen, FEGA Norway Technical Lead. 

Managing human omics data is challenging due to its sheer size and privacy concerns, often resulting in restrictions on how and where sensitive data can be shared. The FEGA network follows a federated data access model whereby sensitive data are stored securely within a local or national jurisdiction, while discovery across the network for data of interest are enabled via a central portal.

As of February 2024, the FEGA network comprises seven European national nodes with tens of additional national partners working towards establishing a FEGA node. As the FEGA network continues to onboard nodes from around the world, populated with more and more data, we move closer to a vision of a truly global resource for discovery of and access to sensitive human omics data to accelerate disease research and improve human health. 

“The Federated EGA network is entering a key phase where the first research datasets are now available across the network,” said Thomas Keane, Group Leader at EMBL-EBI. “In coming years, we look forward to expanding these datasets to cover key areas such as cancer and rare diseases for the benefit of patients.” 

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