Noticia

13 European countries have signed a declaration for delivering cross-border access to their genomic information. This is a game changer for European health research and clinical practice: sharing more genomic data will improve understanding and prevention of disease, allowing for more personalised treatments (and targeted drug prescription), in particular for rare diseases, cancer and brain related diseases.

The signatory Member States commit to collaborate on the secure and authorised access to national and regional banks of genetic data and other data relevant for health.

The declaration foresees in particular to:

• Bring together fragmented infrastructure and expertise supporting a shared and tangible goal: One million genomes accessible in the EU by 2022.


• Leverage and maximise the investments already made by Member States at national and EU level, particularly in sequencing, bio banking and data infrastructure.


• Reaching a larger cohort that will provide a sufficient scale for new clinically impactful research.

The Commission will support Member States in setting up a voluntary coordination mechanism of public authorities to link ongoing genomic medicine initiatives. The coordination mechanism will:

• Define a governance model of the cooperation, particularly concerning the terms and conditions for distributed access to genomic data across-borders, usage of the data and others.


• Support the development of technical specifications for secure access and cross-border exchange of genomic datasets within the internal market.


• Facilitate interoperability of relevant registries and databases to support personalised medicine research.

List of signatory countries of the Declaration: The Czech Republic, Cyprus, Estonia, Finland, Italy, Lithuania, Luxembourg, Malta, Portugal, Slovenia, Spain, Sweden, UK. Bulgaria, Croatia, Greece have also committed to sign the declaration. The other EU countries are welcome to join.

More information in the next link: EU countries will cooperate in linking genomic databases across borders