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null A step towards safe access to sensitive human data across borders - CSC has signed the Federated EGA contract

A step towards safe access to sensitive human data across borders: CSC has signed the Federated EGA contract

Finnish FEGA Node, CSC – IT Center for Science, was one of the first Nodes to officially join the Federated EGA by signing the Federated EGA Collaboration Agreement with Central EGA. This is an important step in the formation of a Federated EGA to better address transnational human data sharing challenges.

Enabling discovery and access to sensitive data across national boundaries is vital for improving human health. It enables more powerful and efficient research by increasing the volume and diversity of data available for analysis.

Federated European Genome-phenome Archive

Federated European Genome-phenome Archive (FEGA) is a service for storing and sharing of all types of biomedical data consented for research but not for fully public dissemination. The federation consists of national nodes working together with the European Genome-phenome Archive (EGA).

Since 2016, multiple parallel efforts, supported by ELIXIR and other transnational and national initiatives, have created technical and legal frameworks for establishing the Federated EGA.  

"It is fascinating to see many years of hard development work finally turn into a real service. I am positive this will be a major step forward for the biomedical research community in Finland and elsewhere, promoting the FAIR principles for sensitive research datasets," says Jaakko Leinonen, Senior System Specialist at CSC – IT Center for Science.

The Finnish FEGA Node is operated by CSC – IT Center for Science and provides data management services according to national laws and the requirements of the EU General Data Protection Regulation (GDPR). All sensitive data submitted to the Finnish FEGA Node will stay within the CSC data centers whereas the meta information describing the study will be shared with the EGA to facilitate discovery for further research.

Furthermore, the ownership of the data will not be transferred to the CSC as part of the submission process. CSC acts as a processor by providing a safe and scalable data management service for the data controller. The national FEGA Node aims to foster data reuse, enable reproducibility, accelerate biomedical research, and improve human health, for example as part of the 1+MG initiative.

The CSC FEGA service development was coordinated through ELIXIR Finland and required partnership in a number of H2020 grants (e.g. ELIXIR-EXCELERATE, CINECA and ELIXIR CONVERGE). Importantly, the Nordic e-Infrastructure Collaboration (NeIC) funded Tryggve and Heilsa projects to facilitate building of Nordic competence for sensitive data management, joint service development and support for launch of operational services. As a result, all Nordic FEGA Nodes are well prepared for the future challenges and act together as a strong unit within the FEGA consortium. 

The Finnish Ministry of Education and Culture funds the operational costs for the Finnish researchers, students, teachers and the international collaborators. The Federated EGA will be released for use by the end of 2022.


Read more about the CSC Sensitive data services:

CSC Sensitive Data services web pages

For more information write to: servicedesk@csc.fi (subject: Sensitive Data Service).