null FEGA

Federated European Genome-phenome Archive

Federated European Genome-phenome Archive (FEGA) is a service for storing and sharing of all types of biomedical data consented for research but not for fully public dissemination. The federation consists of national nodes working together with the European Genome-phenome Archive (EGA).

The Finnish FEGA Node is operated by CSC and it will provide data management services according to national laws and fulfilling the requirements of the General Data Protection Regulation (GDPR). All sensitive data are stored within Finland at CSC data centers. The ownership of these data are not changed by using this service – the data owner acts as a data controller and CSC will provide these services with data processor responsibilities.

The FEGA service has three distinct customer types: data owners (controllers), Data Access Committee members, and authorized end-users (researchers, students and teachers). Services for each customer segment are described below.

FEGA services for data owner

The data sets stored as part of the FEGA service must comply with the national open science policy and FAIR principles. These data must also include original consent that supports re-use in research. Requirements are evaluated periodically (3 years) to ensure data sets comply with the appropriate metadata requirements in order to make data findable and interoperable with other national and similar international data sets. Data sets must also be accessible. Each data set must have a functioning Data Access Committee that approves data for research use maintaining data as part of the general Open Science policy. The metadata will also enable data sets to be findable as part of the national services but also available from international services such as the EGA.

Data submission service

The storing of data sets to Federated European Genome-phenome Archive service is a multi-step process called submission, including e.g. data files uploading, describing metadata, and assigning the Data Access Committee. Submission to the FEGA service starts with authorization of a person(s) that will represent data owner organization during the submission process. The FEGA service will provide customer support only to the named person(s) and the required tools supporting submission process.

Submission is completed when all data have been transferred to the FEGA service, data files have been validated by the service provider and the necessary metadata have been provided. At this point the FEGA tools allow authorized submitter to close the submission process leading to a frozen data set ready to be published from the FEGA service.

Data storage services

The FEGA service provides two copies for the stored data sets:

  1. a working copy that can be authorized by the DAC for re-use; and
  2. another copy kept in separate storage service as a frozen backup.

In both cases data are encrypted at rest and maintained by the CSC staff members using our infrastructure within Finland. Data are decrypted only for DAC authorized researchers as part of the secure computing services, such as SD Desktop.

Each organization has a 200 TB quota paid by the Ministry of Education and Culture. This quota can be extended by negotiating with CSC. Please contact CSC sensitive data service helpdesk to initiate negotiations.

Data discovery services

Submitted data will be made discoverable through FAIRDATA Etsin service and at the EGA website.

Services for Data Access Committee

Data Access Committee (DAC) has the responsibility for authorizing access to the governed data sets in FEGA service. Access decisions are made based on data access applications from the researchers. DAC decisions are recorded and stored in an electronic DAC tool at CSC and these decisions are enforced within the CSC Sensitive Data services. The DAC tool keeps full decision and event logs for six years. Data Access Committee members must be named for the FEGA service to be able to access the DAC tools.

The DAC tool provided is SD Apply.

Services for authorized end-users

Authorized end-users are researchers, students or teachers representing national research sector institutions and higher education, or their named collaborators. Data access authorizations have been approved by appropriate DACs governing the data sets within the FEGA service.

FEGA services will support end-users with

  • help-desk answering to any service related question or resolving together issues related to the service use;
  • providing training material and organizing hands-on workshops;
  • coordinating an answer to questions that cover multiple nodes across the FEGA network; and
  • advising data use on Sensitive Data services.

COVID-19 Data

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