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Secure and authorized cross-border access to genomic and other health data in the Union will support innovation leading to more cost effective use of health care resources in the Union and new approaches to care delivery that better address the needs of individual patients.

Eu Countries Share Genomic Health Data To Boost Research

So far 18 EU Member States signed the declaration 'Towards access to at least 1 million sequenced genomes in the EU by 2022”. This European project aims to deliver cross-border access to genomic health data.

China and USA lead in genome sequencing for research purposes, Europe lags behind. The world’s largest genetic research center is in Shenzhen (China).China’s databases hold so far an estimated 40 million people’s DNA samples. But the plans are big – 100 million whole human genomes sequenced by 2030. To achieve this goal, the China Precision Medicine Initiative announced in 2016 a $9.2 billion, 15-year project. A US precision medicine initiative announced to give $28.6 million to three gene sequencing centers to decode the genomes of 1 million Americans. According to National Institutes of Health, the AllofUs study is “one of the country’s most ambitious biomedical research efforts ever undertaken”.

With ‘Towards access to at least 1 million sequenced genomes in the EU by 2022” Europe also wants to move towards precision medicine. This could be a game changer for European health research and clinical practice: sharing more genomic data will improve understanding and prevention of disease, allowing for more personalized treatments (and targeted drug prescription), in particular for rare diseases, cancer and brain related diseases.

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 maximize 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 Declaration on linking genomic health data across borders is a mechanism of cooperation between the EU signatory countries, which are committed to collaborate on the secure and authorized access to national and regional banks of genetic and other health data. Having a larger cohort of genomic data, will allow for more clinically impactful research. This will contribute to better health and care delivery to European citizens, better prevention of diseases and more accurate personalized treatments, in particular for cancer and brain related diseases, as well as for rare diseases.

Having a larger cohort of genomic data, will allow for more clinically impactful research

The signatory Member States cooperate closely in order to overcome data silos, lack of interoperability and fragmentation of smaller national initiatives. Investments in sequencing, bio banking and data infrastructure will be maximized. The right to data privacy will be secured, while giving citizens an active role in their personalized treatment.

The initiative was originally launched on 10 April 2018 and since then it was signed by Austria, Bulgaria, Croatia, the Czech Republic, Cyprus, Estonia, Finland, Greece, Italy, Lithuania, Luxembourg, Malta, Portugal, Slovenia, Spain, Sweden, Netherlands and the UK.

Due to Global Alliance for Genomics and Health, in 2030 already over 36 million rare disease patients and over 123 million cancer patients globally will have their genome sequenced. If we can enable secondary use of clinical genomic data for research, we will have more than 60 million virtual cohort by 2025.

Read the declaration of cooperation ‘Towards access to at least 1 million sequenced genomes in the EU by 2022” here:

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