[Federated] EGA: Providing global discovery and access for sensitive human data

Le résumé fourni par la source

With increasingly strict regulations for managing sensitive human omics and healthcare-derived data, solutions are required to ensure research and clinical data can be accessed across national borders. Safely sharing sensitive data is vital for data reuse to support biomedical research and personalised medicine programs. The Federated European Genome-phenome Archive (FEGA) provides a data sharing solution of infrastructure and governance frameworks to support discovery of and secure access to human data globally, while respecting national data protection regulations. Prompted by European initiatives such as the 1+ Million Genomes and European Health Data Space, the FEGA was officially launched in 2022 with a network of nodes in the UK, Spain, Norway, Sweden, Finland, and Germany. The next phase of FEGA will build upon these early successes to expand data sharing both within and outside of Europe. Ultimately, the FEGA vision is to build a global, interoperable discovery and access network of human data resources, to accelerate disease research and understand and improve human health.

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