Submitting data to the EGA

To recap, EGA provides a service for archiving, processing and disseminating all types of potentially identifiable genetic and phenotypic human data – on subjects who have consented for the data to be used in biomedical research, but not for unlimited public data release. Alternative data repositories that would allow public access to data are shown here (Figure 9).

The submission process includes raw or processed data (or both) and metadata. Metadata describes the data files and includes information about the study, the samples from which the data were generated, and the process by which data were generated and analyzed. The EGA receives studies of different sizes and complexity which can make submitting metadata challenging. The EGA offers a web-based, interactive Submitter Portal where users can enter and organize metadata manually. For large-scale or highly complex projects, the EGA provides an API to submit programmatically. The metadata model is based on the International Nucleotide Sequence Database Collaboration. For further information, examples, and compatible data formats, see the EGA metadata schema or email the EGA helpdesk. Submission-specific links can be found below.

Each submission process requires:

1. The signature of the Data Processing Agreement (DPA). The DPA states the conditions and responsibilities of data processing as well as the relationship between the data controller (Data Access Committee, DAC) and the data processor (EGA) . By signing this agreement, data controllers can ensure sensitive data are being handled according to data protection regulations and with security protections in place to prevent unauthorised access.
2. Submitted data to be consistent with the initial informed consent and with the applicable laws and regulations
3. Submitters must have authorisation on behalf of the organisation
4. A responsible individual or organisation must be identified for making data access decisions