Originally signed on 10 April 2018 during Digital Day 2, the initiative on linking Genomic data across the EU is now supported by 20 Member States[1]: Austria, Bulgaria, Croatia, Czech Republic, Cyprus, Estonia, Finland, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, the Netherlands, Portugal, Slovenia, Spain, Sweden and the UK.
A game changer for European health research and clinical practice
By reaching a cohort of at least 1 Million Genomes, the Signatories of the Declaration aim to improve the prevention, diagnosis and treatment of diseases by providing a sufficient scale for accessing genomic data linked to clinical and phenotypic data for new clinically impactful associations in medicine to the benefit of citizens’ health. The initiative focuses in particular on cancer, rare diseases and prevention of common and complex diseases. It is expected that a federated framework for linking genomic data across the EU will also contribute to the efficiency and sustainability of health systems in the EU.
Working together
The Signatories of the Declaration will work together to ensure distributed, authorised, privacy respecting and secure access to national and regional banks of genetic and other relevant data for the understanding of genetic associations that cause or predispose diseases and to facilitate further development of personalised medicine. The initiative will build on ongoing national and European activities.
The kick-off meeting took place on 21 September 2018, and since then, representatives and experts from the Signatory Member States meet on a regular basis.
During the first year, the group has started to map and analyse genomic initiatives at national and regional level as well as on a European level, and is working on the scope and governance of the initiative, analysing the essential elements of good genomic practice, security and privacy frameworks, infrastructural requirements, ethical and legal aspects, as well as standards for data requirements and sequencing practices, etc.
A comprehensive roadmap to drive the initiative forward is expected by the end of the year.
[1] Eight additional countries are following as observers.