Croatia has become the latest EU member state to sign a declaration driving efforts to link up access to existing and future genomic databases across the EU and make at least one million sequenced genomes accessible by 2022, joining 16 other countries that have committed to collaborate.  

Unveiled in April, the initiative, described as a "game changer for European health research and clinical practice", is in line with the mid-term review of the European Commission’s Digital Single Market strategy, supporting the creation of a “secure health data infrastructure at EU level”.
 

"This initiative can boost the development of public health for the benefit of EU citizens,"

Vytenis Andriukaitis, Commissioner for Health and Food Safety

Croatia signed the declaration, Towards access to at least 1 million sequenced genomes in the EU by 2022, before the first meeting marking the start of the implementation phase, which saw national representatives of the 17 countries meet in Brussels in September. Austria, Bulgaria, the Czech Republic, Cyprus, Estonia, Finland, Greece, Italy, Lithuania, Luxembourg, Malta, Portugal, Slovenia, Spain, Sweden, the UK, and now Croatia are the 17 EU member states involved. 

Commissioner for Health and Food Safety Vytenis Andriukaitis welcomed the announcement earlier this year, calling on other countries to sign the declaration in a bid to make the EU “a beacon for global health research”.

“This initiative can boost the development of public health for the benefit of EU citizens. It adds to data capabilities of the European Reference Networks, who started clinical treatment and research of rare diseases towards the end of last year, and improves clinical trials.”

The signatory member states will now have to agree on a “suitable governance model of cooperation” and iron out the technical requirements needed for the implementation of the initiative, while leveraging investments already made, be it at national or EU level, especially in sequencing and bio banking.

The European Commission said ethical, legal and social aspects around access to data would be “carefully addressed”, acknowledging that a variety of barriers would need to be overcome in order to be able to link access to national genomic databanks and biobanks, particularly around data silos and the lack of interoperability in healthcare. 

It is expected that more countries will join the initiative later this year, but it is unclear what impact Brexit will have in terms of the UK's involvement in the project.

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Contact the author: lpostelnicu@himss.org