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Sixteen EU Member States Sign the Genomics Declaration

Declaration foresees to bring together fragmented infrastructure and expertise supporting one million genomes accessible in the EU by 2022
12 Sep 2018
Bioethical Principles and GCP;  Targeted Therapy

On 11 September 2018, the European Commission announced that Austria has just signed the declaration 'Towards access to at least 1 million sequenced genomes in the EU by 2022'. Greece also signed the declaration on 6 September 2018, thus becoming part of the joint European effort to link genomic databases across borders and to build secure health data infrastructure at EU level. Greece and Austria are the 15th and 16th EU Member States that signed the Genomics Declaration. Austria is the current holder of the rotating Presidency of the EU.

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. 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.

The European Alliance for Personalised Medicine’s (EAPM) announced on 12 September 2018 that will be working hand-in-hand with the Austrian EU Presidency to move the initiative forward. The latest signature remarks to what began life of the EAPM MEGA initiative; MEGA stands for Million European Genomes Alliance.  

Earlier this week, an EU Informal Health Council meeting was held (10-11 September) in Vienna, under the Austrian Presidency, with digital health, access to innovative medicines and Health Technology Assessment on the agenda. The country’s Health Minister Beate Hartinger-Klein put forward the idea that EU Member States should consider specific guidelines for eHealth investment. This would allow more efficient data sharing. What is required is an interoperable digital infrastructure encompassing all in-patient and out-patient systems with the necessary catalogues. Meanwhile, the eHealth network of various Member State authorities should come up with specific guidelines for investment across Europe.

Last update: 12 Sep 2018

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