Austria has just signed the declaration 'Towards access to at least 1 million sequenced genomes in the EU by 2022'. Greece also signed the declation on 6 September, thus becoming part of the joint European effort to link genomic databases across borders and to build secure health data infrastructure at EU level.
Mariya Gabriel, Commissioner for Digital Economy and Society welcomed this new step forward:
Greece's commitment to this initiative shows the importance of European cooperation in assuring access to genomic and other health data, which will foster research and ensure better disease prevention and personalised care all over Europe.
The Declaration on linking genomic databases across borders is an agreement of cooperation between the signatory countries, which are committed to collaborate on the secure and authorised access to national and regional banks of genetic and other health data. Such cooperation will contribute to better health and care delivery to European citizens and ensure Europe's leading place in health research. Better prevention of diseases and more accurate personalised treatments, in particular for cancer and brain related diseases, as well as for rare diseases, are among the expected deliverables of this cooperation.
The Declaration on linking genomic databases across borders was originally launched on 10 April 2018 during the Digital Day 2. It has been signed since then by Bulgaria, the Czech Republic, Cyprus, Estonia, Finland, Italy, Lithuania, Luxembourg, Malta, Portugal, Slovenia, Spain, Sweden and the UK. Croatia has also committed to join this list.
The signatory Member States of the Declaration have declared their readiness closely cooperate in order to overcome data silos, lack of interoperability and fragmentation of smaller national initiatives. This will contribute to a larger cohort of genomic data, which will allow for more clinically impactful research. Investments in sequencing, bio banking and data infrastructure will be maximized. Most important, the right to data privacy will be secured, while giving citizens an active role in their personalised treatment and putting their needs at the centre of healthcare innovation.
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, and;
- Facilitate interoperability of relevant registries and databases to support personalised medicine research.
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