Federated European Genome-phenome Archive

Federated European Genome-phenome Archive (FEGA) is a service for storing and publishing personally identifiable genetic and phenotypic data given with consent for research but not for full public dissemination. The federation consists of national nodes across the European Union, and elsewhere, working together with the European Genome-phenome Archive (EGA). The Finnish FEGA node is operated by CSC and it provides data management services for sensitive biomedical research data according to national Finnish laws and the General Data Protection Regulation (GDPR).

The data to be stored in FEGA must comply with the national Open Science policy and FAIR principles, and has to include the original consent that supports its reuse in research. The data is required to have necessary descriptive data (metadata) associated with it, as defined by the EGA, and it has to be maintained by the data owner as part of the Open Science policy. The ownership of the data is not transferred by using this service and the data owner remains as the data controller for any data stored in the FEGA. Each stored data set must have a functioning Data Access Committee appointed by the data owner that processes and approves data access applications for research use.

The metadata and information about the Data Access Committee is shared with EGA so that data sets will be findable and data access requests can be made. Data and metadata are evaluated periodically to ensure that they comply with the requirements above, and may be removed from the service if the criteria are not met.

The FEGA service provides the following functionalities for users:

• data submission;
• secure data storage; and
• data access application processing.

Data submission

The submission function provides means and methods for encrypting the data and transferring it to CSC, describing its metadata, and finally publishing certain non-sensitive metadata so that the data will be findable according to FAIR principles.

After publishing the data will be listed at EGA dataset catalogue.

Secure data storage

The secure data storage is an internal function of FEGA and it ensures that data is stored encrypted at all times, and that data access is limited to approved access grants only. A separate backup copy of the data is being maintained at a separate physical location. The data is stored at CSC data centres within Finland.

Data storage in the service is not covered by the free-of-charge use cases for users affiliated with a Finnish higher education institution, and submitting data to the service always requires a separate contract between the submitting organisation and CSC.

Data access application processing

The data access application function supports the Data Access Committee in their data access application processing by providing an online tool for both the applicants and the committee. The tool records data access requests by applicants, circulates the applications among the committee, and keeps an account of all granted access permissions. The tool maintains an indisputable history of all actions, taken by any party, to the application processing.

COVID-19 Data

If you are planning to submit COVID-19 phenotypic clinical data to FEGA, use the metadata model defined by Benasconi et al. (2020). This helps to promote interoperability between studies.