Demonstrating federated EGA services for sensitive data discovery & access

Over the last 10 years, most individual-level human omics data have been generated in the context of research consortia and shared via global repositories such as the European Genome-phenome Archive (EGA). Many countries now have emerging personalised medicine programmes which are generating data from national or regional initiatives, resulting in a shift for human genomics from being research-driven to healthcare-funded. Genetic data generated in a healthcare context is subject to more stringent information governance than research data. To address this need, the Federated EGA (FEGA) provides a network of connected resources for transnational discovery of human data for research while also respecting jurisdictional data protection regulations. This network fosters data reuse, enables reproducibility, and accelerates biomedical research in the context of emerging personalised medicine programs and healthcare initiatives. In the context of ELIXIR projects such as ELIXIR EXCELERATE and ELIXIR CONVERGE, these national human data sharing initiatives have resulted in the development and implementation of national “nodes” within the FEGA Network. In September 2022, the FEGA Network was officially launched with the signing of FEGA Collaboration Agreements with the five inaugural FEGA nodes in Finland, Germany, Norway, Spain, and Sweden. These nodes are now focusing on rolling out their services to their first users to support data sharing for research purposes. In parallel, tens of additional countries are in earlier stages of establishing a FEGA node, building upon the successes of the inaugural nodes. This presentation introduces and demonstrates user-facing Federated EGA services for researchers to discover and access sensitive human data within the FEGA network, highlighting how different services have been implemented by different national nodes to address their use cases. Two services - data discovery and data access - from Central EGA and two FEGA nodes - FEGA Norway and FEGA Finland - are presented to highlight implementation solutions. This presentation was given at the ELIXIR All-Hands Meeting in Dublin, Ireland in 2023.