A new service for publishing sensitive medical research data deployed in a pilot project

The FEGA service stores sensitive research data based on consented samples obtained 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 reuse of sensitive research data, enabling the realisation of the principles of open science. Research data collated in publicly funded projects should be made available as openly as possible for researchers other than those who created the primary discoveries.

The FEGA service improves the transparency of research when, for example, referees are granted access to research data during the publishing process. Research will be more 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 FEGA project. In a pioneering European effort, 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 reuse 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 project 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 acts as the controller for these data.

Safe use

“This pilot was the first time that Finnish research data were submitted to the national FEGA service, where the data are also findable 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 scaling of this service by other stakeholders 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 reuse 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 reuse in CSC’s secure sensitive data services without making any unnecessary copies.

Permission to use certain data can be granted if external researchers pledge to comply with 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 stored in the FEGA service use CSC’s Sensitive Data Apply service and data are analysed within the SD Desktop 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 access 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.

Collaboration with ELIXIR network

ELIXIR is a European life sciences infrastructure, bringing together scientists from 21 countries and over 250 research institutes.

ELIXIR Finland is part of CSC and has been involved in coordinating the Finnish FEGA service. The FEGA service is being developed in a joint Nordic project funded by the Ministry of Education and Culture.

“Across Europe, Finland is one of the first countries to have established a national FEGA service and is now also among the first countries to have published sensitive research data on FEGA. The service, built in collaboration with the ELIXIR network, enables researchers to publish and find data internationally,” says Tommi Nyrönen, Director of ELIXIR Finland.

The service is expected to attract new users among Finnish researchers and from the international research community.

Further information:

Ilkka Lappalainen, Director of Sensitive Data Swervices at CSC – IT Center for Science, email ilkka.lappalainen at csc.fi

Sanna Vuoristo, Academy Research Fellow at University of Helsinki,
email sanna.vuoristo at helsinki.fi

Saila Koivusalo, Senior Medical Officer at HUS Helsinki University Hospital,
email saila.koivusalo at helsinki.fi