The Federated European Genome-Phenome Archive (FEGA) differs from other available publication and analysis services in that the data are not exported from the service, but analysed within a protected internal cloud service.
The FEGA service is able to store sensitive data based on samples obtained consensually for research purposes, which cannot be published in open-access databases. Such data can include sequencing data for RNA molecules or DNA sequencing data for specific genes from cells donated by patients.
The benefit of FEGA is the controlled and secure further use of sensitive data, enabling the realisation of the principles of open science . Research data collected in publicly funded projects should be made available as openly as possible also to researchers other than those who have made the primary discovery.
The service improves the transparency of research when, for example, referees are granted access to research data during the publishing process. Research will become increasingly efficient when researchers gain access to ready-made resources. Impact will increase when the same data are used in multiple studies. Making data openly available makes research reproducible, improving in turn the quality of research.
A unique pilot project
The University of Helsinki, HUS Helsinki University Hospital and CSC – IT Center for Science carried out a pilot project in the FEGA service. In a pioneering effort in Europe, sensitive data were exported to a national FEGA service for the first time.
“Following the entry into force of the General Data Protection Regulation of the EU, the lack of platforms suited to the storage and further use of sensitive data has limited opportunities to conduct basic clinical, translational and medical research. The FEGA service can also be used to initiate new research. The practices established in the pilot are expected to benefit the storage and use of sensitive data down the line,” says Academy Research Fellow Sanna Vuoristo from the University of Helsinki.
“The deployment of the service, which enables controlled and secure data use, is important for European and Finnish biomedical and medical research. I am excited that this long-term cooperation project between HUS, CSC and the University of Helsinki has now been completed,” says Medical Officer in Charge of Research and HUS's FEGA-pilotproject leader Saila Koivusalo.
CSC has developed the national FEGA service in Finland, providing it to data controllers and researchers. HUS has collected the samples used in the FEGA pilot. Researchers at the University of Helsinki’s Faculty of Medicine used these samples to sequence short RNA molecules. They then analysed this sequenced material, publishing an article on the data in an international open-science publication series. HUS is the controller of the data.
Safe use
“This pilot was the first time that Finnish research data were exported to the national FEGA service, where the data are also available internationally. Thanks to FEGA, data need not be transferred across borders. Instead, they remain securely encrypted on CSC servers in Finland. Actual data delivery was preceded by a time-consuming stage in which relevant agreements were concluded between different parties. These agreements and established practices will facilitate service use in the future,” says Director of Sensitive Research Data Services Ilkka Lappalainen at CSC.
In contrast to previous international services, the current FEGA service enables more controlled further use of researchers’ data, as the controller can genuinely control access to the resources throughout their entire life cycle. FEGA enables the storage of sensitive data in Finland in a manner that fulfils all of the GDPR requirements. Data will be handed over for further use in CSC’s secure service without making any unnecessary copies.
Permission to use certain data can be granted if external researchers pledge to observe the relevant terms and if the use of the data accords with the purpose for which the data were originally provided by informed consent. Applications for access to data in the FEGA service are submitted in CSC’s Sensitive Data Apply service. Applications for access to data exported from the Faculty of Medicine, University of Helsinki, and HUS to the FEGA service will be assessed by a recently established data committee composed of specialists, lawyers and representatives of data controllers active on Meilahti Campus. In its inaugural term, the committee is chaired by Senior Medical Officer in Charge of Research Saila Koivusalo at HUS.
Further information:
Academy Research Fellow Sanna Vuoristo, University of Helsinki
Medical Officer in Charge of Research Saila Koivusalo, HUS Helsinki University Hospital
Director of Sensitive Research Data Services Ilkka Lappalainen, CSC – IT Center for Science Ltd
Further information about CSC’s FEGA service