Enabling discovery and access to sensitive data across national boundaries is vital for improving health care. It enables more powerful and efficient research by increasing the volume and diversity of data available for analysis. It allows us to better understand genetic factors influencing the causes and course of diseases and develop new medicines and treatments.
Genomic and other sequencing based human data are typically generated by research initiatives and shared under controlled-access conditions via specialist data repositories which provide services for data submission, discovery, and access.
The EGA (European Genome Archive) is one such repository. Established in 2008 at EMBL’s European Bioinformatics Institute (EMBL-EBI) in the UK, since 2012 the EGA (“Central EGA”) has been jointly managed by EMBL-EBI and the Centre for Genomic Regulation (CRG) in Spain.
With emerging personalised medicine programmes in many countries, human genomics data is increasingly generated in routine healthcare. Those data are subject to strict governance and must follow national data protection legislation.
To bring national genomic data together in a secure way, the Federated EGA will provide a network of connected resources to enable transnational discovery of and access to human omics data for research, while also respecting jurisdictional data protection regulations. In this way, the Federated EGA infrastructure supports the goals of European initiatives such as the 1+ Million Genomes initiative (1+MG), the European Health Data Space, and the GDI Project.
The Federated EGA is made up of “Nodes” – typically nationally funded and operated – which store and manage data locally while allowing global discovery within the Federated EGA network.
In early June 2022, GHGA, through the DKFZ as the coordinating legal entity, signed a collaboration agreement with the European Genome-Phenome Archive (EGA) to become the German national node of the federated EGA. Based on the agreement, GHGA will be able to exchange non-personal metadata across the EGA network to make it compatible with the „FAIR“ principles.
Further information: https://ega-archive.org/federated