Alignment with EU strategy
What it is and how this project will contribute
The vision : The EU’s flagship ‘1+ Million Genomes’ (1+MG) initiative aims to enable secure access to genomics and the corresponding clinical data across Europe to support ground-breaking research and health policy making and incentivise personalised healthcare treatments with the potential to improve disease prevention.
The signatory countries in 1+MG decided to implement the initiative along a two-staged Roadmap (2018-2022 and 2023-2027) detailing their activities across four dimensions: governance, trust framework, infrastructure and data.
Design and testing: In the design and testing phase, the Horizon 2020 project Beyond 1 Million Genomes (B1MG) supported and coordinated on the operational level the implementation of the Roadmap. It facilitated an agreement on infrastructure setup, legal and technical guidance, data standards, requirements, and best practices to enable data access.
Scaling up and sustainability: Moving into the scale-up and sustainability phase of 1+MG has seen the launching of the Genomic Data Infrastructure (GDI) project and the Genome of Europe project, both co-funded under the Digital Europe programme. The Genome of Europe project will work closely together with GDI to address the regulatory challenges of providing access across national borders to genome, health and clinical record data.
Population Genomics: in 2024 Genome of Europe project started, which will collect whole-genome sequencing (WGS) from an unprecedented number of subpopulations and minorities across Europe. With a strong focus on public engagement, transparency, ethical and legal frameworks, and sustainability, GoE will lay the groundwork for responsible genomic advancements across Europe, promoting the EU’s global leadership in genomic research and personalised health care.
Future steps: In future, the potential creation of a new European Digital Infrastructure Consortium (EDIC) for genomics will provide opportunities for the secondary use of data in the GoE project, which will feed into the larger framework of the European Health Data Space (EHDS).