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

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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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EU criticizes UK's unilateral breach of Northern Ireland Protocol

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Following the UK government's statement today (3 March), that they intend to unilaterally extend the grace period for certain provisions agreed in December with the UK, European Commission Vice President Maroš Šefčovič (pictured) has expressed the EU's strong concerns over the UK's action, as this amounts to a violation of the relevant substantive provisions of the Protocol on Ireland/Northern Ireland and the good faith obligation under the Withdrawal Agreement.

This is the second time that the UK government is set to breach international law.In its statement the Commission states that the UK's action constitutes a clear departure from the constructive approach that has prevailed up until now, thereby undermining both the work of the Joint Committee and the mutual trust necessary for solution-oriented co-operation.

The UK did not inform the EU co-chair of the Joint Committee. The statement says that the matter was one that should have been addressed under the structures provided by the Withdrawal Agreement. Vice President Šefčovič has reiterated that the Protocol on Ireland/Northern Ireland is the only way to protect the Good Friday (Belfast) Agreement in all its dimensions and to avoid a hard border on the island of Ireland.

The EU has been flexible in trying to find practical workable solutions, based on the Protocol, to minimize disruption caused by Brexit and to help facilitate the everyday life of communities in Northern Ireland. The Joint Committee formally endorsed these solutions on 17 December 2020 in order to help businesses adapt to the new reality.

The vice president has also recalled that at the last EU-UK Joint Committee on 24 February, the UK reiterated its commitment to the proper implementation of the Protocol, as well as the implementation without delay of all decisions taken in the Joint Committee in December 2020.

He also recalled that the mutually agreed joint engagement with Northern Irish business groups and other stakeholders was meant to jointly look into solutions. In a phone call, Šefčovič informed David Frost that the European Commission will respond to these developments in accordance with the legal means established by the Withdrawal Agreement and the Trade and Co-operation Agreement.

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Hungary's Fidesz party leaves largest EU parliamentary group

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Hungary’s ruling Fidesz party said today (3 March) it was leaving the largest centre-right political group in the European Parliament after the faction moved towards suspending it in a tug-of-war over Prime Minister Viktor Orban’s democratic record, write Marton Dunai and Gabriela Baczynska.

Fidesz’s departure from the European People’s Party (EPP) group is likely to reduce Orban’s influence in Brussels following a long conflict over his perceived backsliding on the rule of law and human rights.

“I hereby inform you that Fidesz MEPs resign their membership in the EPP Group,” Orban wrote in a letter to the faction’s head, Manfred Weber, which was published on Twitter by Katalin Novak, a Fidesz deputy chairwoman.

The EU has lambasted Orban for putting courts, media, academics and non-governmental organisations under tighter government control. Orban, who faces a national election next year, denies the criticism and has refused to change tack.

“I welcome the long overdue departure of Fidesz and Viktor Orban from mainstream European politics,” said Dacian Ciolos, head of a liberal group in the European Parliament. “There is no space for the toxic populism of Fidesz in mainstream European politics.”

Earlier on Wednesday, the EPP group voted overwhelmingly to allow for suspension and to make ejection of member parties easier. A separate motion to freeze out Fidesz was expected soon.

Calling the changes “a hostile move against Fidesz”, Orban reacted before the EPP faction denied its 12 Fidesz members the right to speak on behalf of the group or represent it in other work of the chamber.

In his letter, Orban wrote that limiting the ability of Fidesz members of the European Parliament to carry out their duties “deprives Hungarian voters of their democratic rights”.

The conservative EPP faction includes German Chancellor Angela Merkel’s CDU, Poland’s opposition Civic Platform, Belgian Christian democrats, France’s Les Republicains and others.

Without the 12 Fidesz members, it will have 175 EU lawmakers and remain the largest in the 705-strong chamber.

Fidesz has been suspended from the EPP pan-European party since 2019, though its EU lawmakers have so far remained in the conservative faction in the European Parliament.

Forcing a university founded by liberal billionaire George Soros to leave Hungary and Budapest’s opposition to strict conditions on receiving EU funds were “fundamental” problems, Weber said.

Mujtaba Rahman of the Eurasia Group think tank said the development was “a big strategic loss for Orban in Europe, who will now lose both the influence and protection that the EPP afforded him”.

“His departure from the EPP will lead to him adopting more extreme positions towards Brussels and escalating tensions between the two,” he said.

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EU auditors probe the protection of air passenger rights during COVID-19 crisis

EU Reporter Correspondent

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The European Court of Auditors (ECA) has launched an audit to assess whether the European Commission has been safeguarding effectively the rights of citizens who travelled by plane or booked flights during the coronavirus crisis. The auditors will examine whether the current rules on air passenger rights are fit for purpose and resilient enough to deal with such a crisis. They will check whether the Commission monitored that air passengers’ rights were respected during the pandemic and took action accordingly. In addition, they will assess whether member states took passenger rights into account when granting emergency state aid to the travel and transport industry.

“In times of COVID-19, the EU and member states have had to strike a balance between preserving air passenger rights and supporting the ailing airlines,” said Annemie Turtelboom, the ECA member leading the audit. “Our audit will check that the rights of millions of air travellers in the EU were not collateral damage in the fight to save struggling airlines.”

The COVID-19 outbreak and health measures taken in response have brought about major travel disruption: airlines cancelled around 70 % of all flights and new bookings plummeted. People no longer could or wished to travel, also because of the frequently uncoordinated emergency measures by different countries, such as flight bans, last-minute border closures or quarantine requirements.

EU Member States introduced further emergency measures to keep their struggling transport industry afloat, including airlines, for example by granting them unprecedented amounts of state aid. Some estimates show that throughout the crisis, until December 2020, airlines – including non-EU ones – had obtained or were obtaining up to €37.5 billion in state aid. In addition, twelve member states notified the Commission of state aid measures to prop up their tour operators and travel agencies to the tune of some €2.6bn.

Member states also allowed airlines more flexibility in refunding passengers whose flights were cancelled. The Commission issued guidelines and recommendations, including the fact that offering vouchers does not affect the passengers’ entitlement to a cash refund. However, the passengers whose flights had been cancelled were often pressured by airlines to accept vouchers instead of receiving a cash refund. In other cases, airlines did not refund passengers on time or not at all.

The EU auditors’ report is expected before the summer holiday with the aim of supporting air passengers in times of crisis and launching a general attempt to restore trust in aviation. In the context of this audit, the auditors are also checking whether the recommendations they made in their 2018 report on passenger rights have been put into practice.

Background information

Protecting passenger rights is an EU policy with direct impact on citizens and thus highly visible across member states. It is also a policy which the Commission considers to be one of its great successes in empowering consumers, as their rights are guaranteed. The EU aims to provide all air transport users with the same level of protection. The Air Passenger Rights regulation gives air travellers the right to cash refunds, to re-routing and on-the-ground support such as free meals and accommodation if their flights are cancelled or significantly delayed, or if they are denied boarding. Similar protection exists via a European Directive for people who book package deals (e.g. a flight plus hotel).

For more detail, see the audit preview 'Air passenger rights during the COVID-19 crisis', available in English here. Audit previews are based on preparatory work before the start of an audit, and should not be regarded as audit observations, conclusions or recommendations. The ECA recently published two reviews of the EU’s response to the COVID-19 crisis, one on health and the other on economic aspects. Its work programme for 2021 announced that one in four of its new audits this year will be related to COVID-19 and the recovery package.

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