The Federated European Genome-phenome Archive (FEGA) is revolutionizing the sharing and accessibility of sensitive human genomic data. Building on the foundation established by the European Genome-phenome Archive (EGA), which has served as a vital repository for genetic, phenotypic, and clinical data, FEGA empowers researchers to securely explore and analyze genomic data while adhering to stringent national and international data protection laws.

By decentralizing data storage across national nodes, FEGA maintains the security of data within its country of origin while facilitating global research collaboration. The innovative model has been detailed in a recent publication in Nature Genetics.

Transitioning from Centralization to Federation

Over the past twenty years, the exponential growth of human genomic datasets, coupled with increasingly stringent legal requirements for data access, has underscored the limitations of a centralized repository like the EGA. To better serve the global research community, the EGA team proposed a federated model that aligns with local legal and ethical standards while enabling worldwide access.

A federated model consists of a distributed network where multiple entities operate under a unified framework. Each node retains control over its data and processes, yet standardized protocols promote collaboration and data sharing across borders. This approach enables secure and coordinated data sharing that respects local regulations.

Since 2008, the European Molecular Biology Laboratory (EMBL-EBI) and the Center for Genomic Regulation (CRG) in Spain have jointly managed the EGA, guiding the establishment of the federated data-sharing model utilized by FEGA today. Significant initiatives such as ELIXIR-EXCELERATE, which supports international data sharing, and ELIXIR-CONVERGE, aimed at standardizing data management across Europe, have laid the groundwork for the national FEGA nodes.

The official launch of FEGA took place in September 2022, following the establishment of its federated model in 2020. Initial collaboration agreements were signed with nodes in Sweden, Norway, Finland, Germany, and Spain.

Global Collaboration for Health Impact

Addressing global health challenges, such as pandemics and rare diseases, requires collaborative efforts that transcend national borders. By incorporating a Canadian node, FEGA is now recognized as the world's most comprehensive, secure, and diverse resource for genomic and health data, enhancing its capability to address pressing health questions.

The first datasets were submitted to FEGA by late 2023, demonstrating the effectiveness of the federated model in practice. Currently, FEGA holds nearly 40 datasets, with nodes in Portugal and Poland joining in 2023, and Canada becoming a member in December 2024. Ongoing discussions with potential collaborators, including a Swiss node, who are currently observers of FEGA, signal further expansion.

This partnership allows Canadian researchers to connect rapidly and securely with global collaborators, fostering scientific and clinical innovation while prioritizing privacy and compliance.

FEGA aims to bolster research in disease diagnostics and personalized treatment. Notable examples include:

• Data from the Swedish Childhood Tumor Biobank is poised to advance pediatric cancer research.
• Circulating small RNA sequencing data from Norway's node may aid in identifying biomarkers for endometrial cancer.
• The first dataset from Poland is assisting researchers at the University of Vilnius in their investigation into the genetic basis of overgrowth syndrome, a rare genetic condition in children.

A Vision for the Future

Looking forward, FEGA plans to enhance its metadata standards, aligning with those developed by the Global Alliance for Genomics and Health (GA4GH) to improve data discoverability and interoperability. Future integrations of multi-omics datasets and clinical health records are anticipated to create a more comprehensive understanding of disease biology.

Efforts to encourage more data submissions are also underway, including the development of training resources and the creation of node-specific help desks to assist local users. Furthermore, federated analytics are in development, allowing secure, multi-node analyses without the necessity of downloading sensitive data.

As FEGA evolves, it establishes a benchmark for global human genomics data sharing. By integrating multi-omics and clinical data, FEGA is set to enhance research focused on personalized medicine and inform public health strategies, ultimately improving patient outcomes.