D9.5 Report on implementation of ELSI and policy consideration for controlled access data

The EXCELERATE WP9 focuses on the human data use case. It provides technical extension to the permanent archive for all types of controlled access data, the European Genome-phenome Archive (EGA), that will support genomic information deposition, data management and sharing within local jurisdiction. This report focuses on describing the improvement on the EGA processes that support the use of controlled data access protocol and compliance to the ELIXIR ELSI Policy and the European General Data Protection Regulation (GDPR). It also provides terminology translation between EXCELERATE WP9 technical reports, the ELSI terminology and the GDPR. Currently the EGA service is provided by two European organisations based on a bilateral agreement. The technical solutions delivered during the EXCELERATE WP9 will require a legal framework to enable federated EGA services