European institutes are committed to access to data acr
Institutes from Finland, Germany, Norway, Spain and Sweden have become the first five nodes of the Federated European Genome-phenome Archive (Federated EGA), one of the largest international networks for discovery and access to sensitive human data. It is based on the EGA, issued jointly by EMBL European Bioinformatics Institute (EMBL-EBI) in the UK and Center for Genomic Regulation (CRG) in Spain, and supported by ELIXIR, the European Life Sciences Infrastructure and the “la Caixa” Foundation.
A step towards personalized medicine
Many countries have emerging personalized medicine programs and research initiatives that are generating useful data for understanding human health and disease. These datasets can reveal information relative to others, which is why sharing data across national borders is essential to help researchers understand the causes of diseases, such as cancer, rare diseases or infectious diseases, and to develop new drugs and treatments.
“We are entering a new era of medical research and treatment, with countries around the world launching large-scale genomic research projects to make the most of advances in personalized medicine. This was only possible because citizens and scientists decided to share their data and their discoveries. Easier discovery and sharing means better science and better returns for the people it serves. By launching this initiative, we aim to make all of this possible,” said Arcadi Navarro, research professor at ICREA, professor at Pompeu Fabra University (UPF) and director of the EGA team at the Center for Genomic Regulation ( CRG).
However, data generated in a clinical context is subject to stricter governance than research data and must comply with national data protection legislation. To solve this problem, this sensitive data is usually shared using specialized repositories, which provide secure access and analysis tools to authorized researchers.
One of these references is the European Genome-Phenome Archive (EGA).
Locally stored, globally accessible
Institutes from five countries have now embarked on a collaboration that will improve the way they provide access to sensitive data across national borders. The new federated EGA provides a network of connected data resources that enables cross-national access to human data for research, while complying with national data protection regulations.
The federated EGA is made up of “nodes” based at research institutes that are generally nationally funded and operated. Nodes store and manage data locally while allowing researchers around the world to securely discover and analyze data for new insights, without the data ever leaving the country where it was generated.
“EGA is like a secure search engine for genomic data, which helps accredited researchers find existing data on the disease they are studying,” explained Mallory Freeberg, EGA coordinator at EMBL- EBI. “Before EGA, research study data was generated once, analyzed once, and often ‘locked up’ on the institute’s servers. The EGA allows researchers to easily share their data and access the data of others, safely and securely. This means they can perform more complex analyzes on even larger datasets to unlock new insights into human health and disease. Federated EGA allows us to extend the benefits of data reuse across national borders and truly increase the value and impact of data. »
The national “nodes”
The Finnish FEGA node is operated by CSC – IT Center for Science and provides data management services in accordance with national laws and EU General Data Protection Regulation (GDPR) requirements. These services provide tools and support for the entire lifecycle of sensitive research data, from collection to analysis, publication and authorized reuse. The development of the services was a joint effort with the other Nordic nodes within NeIC’s Tryggve and Heilsa projects, and funded by the Finnish Ministry of Education and Culture and projects coordinated by ELIXIR Finland.
“It is fascinating to see many years of hard development work finally turning into a real service. I am confident that this will be a big step forward for the biomedical research community in Finland and elsewhere, promoting FAIR principles for sensitive research datasets,” said Jaakko Leinonen, Senior Systems Specialist at CSC – IT Center for Science.
Learn more about the Finnish signature of FEGA.
The German Archive for Genome and Human Phenomena (GHGA) strives to provide a national infrastructure as well as an ethical and legal framework that balances the use of FAIR omics data and the data protection needs for Germany. As a pan-German consortium funded by the German Research Foundation under the umbrella of the NFDI association, GHGA combines the expertise of 21 universities and research institutes to form a federated national infrastructure.
Learn more about the GHGA signature.
In Norway, a key part of the infrastructure is the Sensitive Data Service (TSD) services offered by USIT at the University of Oslo. The Federated Node EGA Norway is developed by ELIXIR Norway and operated by the University of Oslo as the responsible legal entity. The basic software modules are developed jointly with the other Nordic nodes in the NeIC Tryggve and Heilsa projects.
Learn more about signing FEGA Norway.
The Spanish FEGA (es-FEGA) is a national storage service for sensitive biomedical data in Spain. Supported by the Spanish Institute of Bioinformatics (INB) in collaboration with Central EGA, sensitive research datasets are mainly housed in the facilities of the Barcelona Supercomputing Center.
The Swedish archive of sensitive data is a secure data archiving and sharing platform for sensitive data sets. It was developed by the National Bioinformatics Infrastructure Sweden (NBIS) in collaboration with other Nordic ELIXIR nodes under the Tryggve and Heilsa projects funded by NeIC and coordinated with Central EGA through ELIXIR.
Learn more about signing Swedish Node.
The ‘central’ EGA nodes – based in the UK and Spain – continue to be managed by EMBL-EBI and CRG and provide services to all researchers worldwide. Importantly, Central EGA is the primary hub through which all data in the Federated EGA Network can be discovered in support of a truly global resource for accelerating disease research and improving human health.
The genesis of the federated EGA was supported by the European Commission through the B1MG and ELIXIR-CONVERGE projects, as a key element of support for the implementation of the European declaration of a million genomes.
“As a European Life Sciences Infrastructure, ELIXIR is committed to supporting the federation of national and local infrastructures to build societal trust, long-term sustainability and optimize scientific progress and human health benefits in a rapidly changing world,” said Niklas Blomberg, ELIXIR Director.
Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of press releases posted on EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.