SPHN Webinar: EGA and Federated EGA: Providing global discovery and access for sensitive human data

Delivered by: 

Dr. Mallory Freeberg
Coordinator, European Genome-phenome Archive
EMBL European Bioinformatics Institute, Hinxton UK
and
Dr. Teresa D'Altri
Project Manager and Coordinator, European Genome-phenome Archive
CRG, Barcelona

About this Webinar:

The European Genome-phenome Archive (EGA) is a service for permanent archiving and sharing of personally identifiable genetic, phenotypic, and clinical data generated for the purposes of biomedical research projects or in the context of research-focused healthcare systems. 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 EGA. Many countries now have emerging personalized medicine programmes which are generating data from national or regional initiatives. Thus, human genomics is undergoing a step change from being a research-driven activity to one funded through healthcare initiatives. Genetic data generated in a healthcare context is subject to more stringent information governance than research data and often must comply with national legislation. To address this need, the Federated EGA provides a network of connected resources to enable transnational discovery of and access to human data for research while also respecting jurisdictional data protection regulations. By providing a solution to emerging challenges around secure and efficient management of human omics and associated data, the Federated EGA fosters data reuse, enables reproducibility, and accelerates biomedical research. In this talk, we will describe how the Federated EGA - in the context of European initiatives such as the European Genomic Data Infrastructure and European Health Data Space - aims to deliver a global resource for discovery and access of sensitive human omics and associated data consented for secondary use, through a network of national human data repositories to accelerate disease research and improve human health.