European institutes commit to data access across borders
Research institutes from five European countries have committed to improving the way researchers discover and access sensitive human data across national borders to enable more efficient health research.
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 of sensitive human data. It builds upon the EGA, jointly delivered by EMBL’s European Bioinformatics Institute (EMBL-EBI) in the UK and the Centre for Genomic Regulation (CRG) in Spain, and supported by ELIXIR, the European life sciences infrastructure and the ”la Caixa” Foundation.
A step towards personalised medicine
Many countries have emerging personalised medicine programmes and research initiatives which generate useful data for understanding human health and disease. These datasets can reveal insights when compared to others, which is why data sharing across national borders is essential to help researchers understand the causes of diseases, such as cancer, rare diseases, or infectious diseases, and develop new medicines and treatments.
“We are entering a new era of medical research and treatment, with countries around the world launching large-scale genomics research projects to make the most out of advances in personalised medicine. This has only been possible because citizens and scientists decided to share their data and their discoveries. Easier discovery and sharing means higher quality science and a better return for the people it serves. By launching this initiative, we aim to help make all this possible,” said ICREA Research Professor Arcadi Navarro, Professor at Universitat Pompeu Fabra (UPF) and Director of the EGA team at the Centre for Genomic Regulation (CRG).
However, data generated in a clinical context are subject to stricter governance than research data and must follow national data protection legislation. To solve this challenge, these sensitive data are typically shared using specialist repositories, which provide secure access and analysis tools to approved researchers.
Institutes from five countries have now committed to a collaboration that will improve how they provide access to sensitive data across national borders. The new Federated EGA provides a network of connected data resources that enables transnational access to human data for research, while also respecting national data protection regulations.
The Federated EGA is made up of ‘nodes’ based at research institutes which are typically nationally funded and operated. The nodes store and manage data locally while enabling researchers worldwide to discover and analyse the data in a secure way to gain new insights, without the data ever leaving the country where it was generated.
“The EGA is like a secure search engine for genomic data, which helps approved researchers find existing data about the disease they are studying,” explained Mallory Freeberg, EGA Coordinator at EMBL-EBI. “Before the EGA, data from a research study were generated once, analysed once, and often ‘locked away’ on the institute’s servers. The EGA makes it easy for researchers to share their data and access others’ data, in a safe and secure way. This means they can perform more complex analyses on even larger datasets to unlock new insights into human health and disease. The Federated EGA allows us to expand the benefits of data reuse across national borders and really increase the value and impact of the data.”
The national ‘nodes’
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). These services provide tools and support for the whole life-cycle of sensitive research data from collating to analysis, publication, and authorised reuse. The development of the services has been a joint effort with the other Nordic nodes within NeIC’s Tryggve and Heilsa projects, and funded by Finnish Ministry of Education and Culture and projects coordinated by ELIXIR Finland.
“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 German Human Genome-Phenome Archive (GHGA) strives to provide a national infrastructure as well as an ethical and legal framework that balances FAIR omics data usage and data protection needs for Germany. As a Germany-wide consortium funded by the German Research Foundation under the umbrella of the NFDI association, GHGA combines the expertise of 21 universities and research institutions to form a federated national infrastructure.
In Norway, a key component of the infrastructure is the services of The Sensitive Data Service (TSD) offered by USIT at the University of Oslo. The Federated EGA Norway Node is developed by ELIXIR Norway and operated by the University of Oslo as the responsible legal entity. Core software modules are developed jointly with the other Nordic nodes in the NeIC Tryggve and Heilsa projects.
The Spanish FEGA (es-FEGA) is a national service for storing sensitive biomedical data in Spain. Supported by the Spanish Institute of Bioinformatics (INB) in collaboration with Central EGA, sensitive research datasets are primarily hosted at the Barcelona Supercomputing Centre facilities.
The Swedish Sensitive Data Archive is a secure data archive and sharing platform for sensitive datasets. It was developed by the National Bioinformatics Infrastructure Sweden (NBIS) in collaboration with other Nordic ELIXIR Nodes through the Tryggve and Heilsa projects funded by NeIC and coordinated with Central EGA through ELIXIR.
The ‘Central’ EGA nodes – based in the UK and Spain – continue to be maintained by EMBL-EBI and CRG and offer services for all researchers worldwide. Importantly, Central EGA is the main hub by which all data within the Federated EGA network can be discovered in support of a truly global resource to accelerate disease research and improve human health.
The genesis of the Federated EGA has been supported by the European Commission through the B1MG and ELIXIR-CONVERGE projects, as a key supporting component to the implementation of the European 1 Million genomes declaration.
“As a European life science infrastructure, ELIXIR is committed to supporting the federation of national and local infrastructures to build societal trust, long-term sustainability and to optimise scientific progress and benefits to human health in a rapidly changing world,” said Niklas Blomberg, ELIXIR Director.