#EAPM: Digital Day to set the ball rolling on one-million genomes project

| April 9, 2018

The European Commission’s Digital Day 2018 takes place tomorrow (Tuesday 10 April) at the ‘Square’ venue in Brussels, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

EAPM has been key to what will be the signing of a major declaration between 15 Member States to commit to a one-million genomes project.

This second, annual one-day event will gather high-level stakeholders in the fields of digital technology and telecommunication, organized by the European Commission under the Bulgarian Presidency of the EU.

The signing session will be launched by Mariya Gabriel, the Commissioner for Digital Economy and Society, and will see member states’ representatives co-sign a Joint Declaration indicating political support for linking existing and future genomic databanks, on a voluntary basis, in order to reach a cohort of one million sequenced genomes accessible in the EU by 2022.

For some time, the Brussels-based EAPM and its stakeholders have pushed the idea of a project that it dubbed ‘MEGA’ (Million European Genomes Alliance) and worked hard to create a coalition of willing member states, urging them to collaborate.

EAPM’s multi-stakeholder Working Group on Big Data originally developed the concept, approved at its annual general meeting as a priority. The subsequent success of the written delegation is based on the foundation that the Alliance has built among affiliates at national level.

This gave the Alliance the political capital to engage with member states’ ministers. And with excellent leadership from the European Commission’s, who played a significant role, the political will appears to have been found.

Writing in magazine Biomedicine Hub, EAPM’s Working Group on Big Data put forward the argument for the project in an article entitled entitled ‘Pulling the Strands Together: MEGA Steps to Drive European Genomics and Personalised Medicine’.

This sets out the framework of why Europe needs more collaboration across EU member states rather than less, certainly in this instance, bearing in mind that healthcare remains a member state competence.

Increasing understanding of the genome is recognised as being one of the main determinants of future improvement in health care.

The availability of genetic data from a large number of individuals increases the ability to investigate questions across many rare and common diseases and in different populations, and also provides more information for understanding clinical care outcomes for an individual.

In Europe, the UK led the way with its 100,000 Genomes Project, which looks at the genome sequences of patients with rare diseases or cancer. Since then there has been an announcement by France to invest €670 million in a genomics and personalised medicine programme.

Speaking before the Digital Day 2018 event, Horgan said: “A co-ordinated, pan-European project such as this would garner crucial genetic information that could have an immeasurable benefit when it comes to the health of current and future EU citizens.”

EAPM, and it seems many others, are convinced that seeking the key to concrete action to chan-nel Europe’s wealth of expertise in genomics is long overdue.

Europe not only has formidable potential, but has already yielded world-beating insights in the short history of the science.

Mario Romao said: “Unfortunately, our expertise in the field is widely scattered, which makes it hard for Europe to compete on scale with the US and China.  By signing this declaration countries recognise the need to join forces and move ahead.”

Meanwhile, EAPM board member Mary Baker, a patients’ rights champion, said ahead of the event: “Genomics is increasingly ready to be used to improve health and it can provide a treasure-house of opportunity.

“It is now beginning to move on from specialist areas such as diagnosis of rare diseases and the selection of appropriate cancer therapies, towards the fuller integration of genomics across healthcare systems that will permit wide use of personalised medicine to improve healthcare and reduce costs. In the end, it’s all about the patients.”

EAPM and its working group have highlighted that genomics is allowing clinicians to prevent – or identify and treat – serious adverse drug reactions to certain medicines. Meanwhile, ensuring that the right drugs are targeted to the right patients is eliminating unintended patient harm and life-threatening emergency medical admissions.

Member of the European Parliament Lambert van Nistelrooij, a strong supporter of EAPM’s work, said: “Using genomics, among other benefits clinicians are now able to far more accurately assess each individual’s personal risk of breast cancer, reducing the need for regular imaging and some-times invasive procedures that deliver imperfect results.

“This allows a move away from a reactive approach to long-term management plans that combine targeted screening and non-invasive options to prevent breast cancer developing.”

It is clear that genomics is aiding understanding of genetic change in tumours, and new, highly personalised and effective medications are now being used that target the genetically different sub-types of lung cancer.

On top of this, prostate cancer researchers are discovering genetic hallmarks that allow them to use a drug originally developed for ovarian cancer treatment to treat patients who have ceased to respond to more traditional prostate cancer approaches.

Said Horgan: “The rationale for a million genomes project is that there are massive gains within easy reach for science, research, medicine, healthcare resources, and patient outcomes. But these gains are still to be grasped.

“Tomorrow’s Declaration is set to go a long way towards putting all the possible gains firmly in Eu-rope’s hands, for the benefit of patients today and in the future.”


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