The kick-off meeting of the implementation of the declaration ‘Towards access to at least 1 million sequenced genomes in the European Union by 2022’ took place today in Borschette Conference Centre in Brussels, with Croatia becoming the 17th EU Member State to join this initiative.
This is the first meeting of the representatives of the signatory Member States, with which the implementation phase has now officially started. The national representatives will have to decide on how to best reach the target of making 1 Million sequenced genomes available in the EU by 2022. They will have to collaborate closely and agree on the most suitable governance model of cooperation, as well as on technical requirements and infrastructure needs. In addition, ethical, legal and social aspects of trustworthy and secure data access will be carefully addressed.
Importance of genomics
If the European countries link access to national genomics databanks and biobanks, it will be possible to capitalise on a large and heterogeneous population and achieve larger samples, needed to achieve real breakthroughs in personalised medicine, cancer research, brain-related diseases and other conditions. Advances in digital technology make it possible to pool genetic information securely across EU borders for research purposes.
The opportunities and benefits of genomics are big; however, there are still major challenges to overcome, such as data silos, lack of harmonisation, common standards, interoperability, no integration with Electronic Health Records (EHR) and fragmentation of smaller national initiatives. The Member States commitment to this initiative is a prove of a real willingness to cooperate in order to overcome those challenges and contribute to a larger cohort of Genomic data in the EU, which will enable more clinically impactful research, improve the understanding and prevention of diseases and allow for more personalised treatments over the EU.
17 signatory member states
The declaration ‘Towards access to at least 1 million sequenced genomes in the European Union by 2022’, which was originally launched on 10 April 2018 during Digital Day 2, has been signed already by Austria, Bulgaria, the Czech Republic, Cyprus, Estonia, Finland, Greece, Italy, Lithuania, Luxembourg, Malta, Portugal, Slovenia, Spain, Sweden and the UK. Croatia became the 17th Member State to join the initiative. They won’t be the last as more countries have committed to join soon.
- EU countries will cooperate in linking genomic databases across borders
- Transformation of Health and Care in the Digital Single Market
- European Commission’s Digital Single Market mid-term review
- Council conclusions on “Health in the digital society – making progress in data-driven innovation in the field of health” adopted on 8 December 2017
- Council Conclusions on “Encouraging Member States driven Voluntary Cooperation between Health Systems” adopted on 16 June 2017
- General Data Protection Regulation (GDPR)