Accessing Sensitive Research Data Via European Genome-Phenome Archive(EGA)

The European Genome-Phenome Archive enables the sharing and processing of sensitive information all across the EU.

FREMONT, CA: A network is anticipated to be established by research organisations to share sensitive health data all across the globe. As a pilot measure in accessing federated networks for the sharing of genomic data, the European Genome-Phenome Archive(EGA) is processing the collaboration agreements with national nodes. Additionally, the federated EGA aims at sponsoring data reuse, reproducibility, acceleration of biomedical research, and improved medical health via secure and efficient management of human omics data.

Generated by research initiatives, the sensitive human omics data are facilitated via specialist repositories, enabling services for data submission, access, and recovery. One testament to this repository measure is EGA, which is jointly managed by the European Biology Laboratory’s European Bioinformatics Institute (EMBL-EBI) and the Genomic Regulation Centre. Countries in the realm are introducing personalised medicine programmes to generate data from national initiatives and promote a transition in human genomics to shift from a research-driven to a research-funding space through healthcare. However, the clinical context-generated data are more highly confidential than typical research data and hence require prioritised governance that is agreeable with the national data protection legislation.

Generally, a federated EGA facilitates a network of connected sources for the transnational discovery and access of human omic data besides heeding jurisdictional data protection and regulations to overcome the hurdles in the sector. In the due course, its infrastructure enables supporting the European initiatives goals’ like the 1+ Million Genomes initiative (1+MG), the European Data Space, and an increased number of EU-funded 1+MG implementation projects that encompasses Beyond 1 Million Genomes.

The approach aims at processing global discoveries within its network per structure nodes, which are typically funded and operated. Several transnational and national initiatives and multiple parallel efforts provide the technical and legal frameworks for the effective establishment of a Federated EGA. Hence, five nodes—Finland, Germany, Norway, Spain, and Sweden—signed the collaboration agreements and were appointed as members of the EGA.

Finland-based IT Centres for Science facilitates data management services relying on the national laws and requirements of the EU's General Data Protection Regulation(GDPR). They provide sensitive research data with tools and support from collection to analysis, publication, and authorised re-use. Meanwhile, the German-based Genome-Phenome services bestow an ethical and legal framework in addition to the national infrastructure for an adequate balance in Omic data usage and data protection. Similarly, Norway holds the Sensitive Data Service (TSD) as the key component of its infrastructure. Spain often stores sensitive biomedical data via national services. Meanwhile, Sweden utilises a secure data archive platform to handle sensitive datasets.

Hence, a federated European Genome-Phenome Archive enables in accessing human omics data, concerning their health and thus favours consistency in clinical trials.