GSS EU Science Funding Gateway

The action will support Member States’ work enabling the creation and operation of an EDIC on genomics in line with the Decision (EU) 2022/2481 of the European Parliament and of the Council of 14 December 2022 establishing the Digital Decade Policy Programme 2030. The action will also support the alignment of the future EDIC with the European Health Data Space (EHDS).

Τhe action is expected to:

• support workshops, working groups, meetings with private and public stakeholders, necessary for creating the EDIC for the 1+MG initiative and supporting its implementation roadmap,
• make analysis and proposals on the necessary legal and ethical enablers and arrangements specific to this EDIC,
• identify and analyse gaps, challenges and unmet needs, and propose the respective actions for the EDIC feeding into the EDIC sustainability roadmap including legal, ethical, organisational and economic aspects, and covering implementation for research, healthcare and public health purposes,
• explore the implications of the EHDS Regulation and operationalise the EDIC’s participation in the HealthData@EU infrastructure,
• establish the evidence base for the health impact and economic implications of genomics (costs/benefits) to inform the relevant health economic models and health policy decisions,
• explore models for public-private partnerships for genomics in healthcare,
• maintain and promote the use of the Maturity Level Model (MLM) developed by the “Beyond 1 Million Genomes” (B1MG) project to ensure coordinated alignment across healthcare systems towards implementation and equity in access to genomics medicine,
• design actions to promote the literacy level and education of citizens, health professionals and policy makers on genomic medicine across Europe,
• establish frameworks that are necessary to ensure that the data made available to users via 1+MG meet the agreed data standards and data quality requirements, including specific roles for the EDIC.

This action should build on / align with the outcomes of the B1MG and GDI projects and goals of the Genome of Europe project, while clearly defining its distinct scope and deliverables. In particular, the data infrastructure developed and deployed by the GDI project and the respective data governance will form the cornerstone of the future EDIC.

The action should also take into account and leverage the synergies with the future European Health Data Space and the respective preparatory projects (e.g. TEHDAS, HealthData@EU pilot).