NEW YORK (GenomeWeb) – The Brussels-based European Alliance for Personalized Medicine has proposed a new project to link sequencing efforts across the EU, ultimately compiling a database of a million genomes for clinical research purposes.
Proponents believe the project, called the Million European Genomes Alliance (MEGA), will spur research, stimulate the life sciences economy, and ultimately improve patient care. They also see it as a response to the Precision Medicine Initiative in the US, which has received initial funding of $215 million and similarly aims to build a research cohort of at least a million individuals that will include their genomic data.
Denis Horgan, executive director of EAPM, told GenomeWeb that the idea for MEGA was incubated in the alliance's big data working group. "We were looking to develop a big idea that Europe could focus on, like the PMI, one that could bring European stakeholders behind it," he said.
As such, MEGA is just as much a vehicle for advancing personalized medicine in Europe, as it is for bringing together actors from different European countries to overcome what Horgan describes as a "fragmented" research environment.
In Europe, "90 percent of funding has been national and 10 percent has been at the European level," said Horgan. "Genomics is often funded at the national level, and so genomics data is often in a national context," he said. "That makes it harder to collaborate among member states." MEGA, therefore, could serve as a "flagship" for dealing with issues that have prevented European cooperation to date.
"Issues concerning data sharing can be dealt with behind this big idea," said Horgan. "Data sharing is controversial as some governments don't want to share data between different member states. But MEGA invites different initiatives to link together while maintaining independent platforms," he said. "We need to tap into what has been done and integrate it."
EAPM initiated the first meetings around MEGA in June, and will continue to discuss the project at ministerial levels among the EU's 28 member states in September, Horgan said. Earlier this month, the alliance released a policy briefing, outlining its vision for the project.
In it, it laid out the rationale for such an initiative, referencing the utility of genomic data in improving healthcare and personalized medicine, along with the declining cost of whole-genome sequencing. The ability to generate a large genomic data set for European researchers to use would also increase their ability to "investigate questions across a large number of diseases in different populations" and provide more information for understanding the results for clinical care, EAPM wrote in the briefing.
EAPM cited Genomic England's 100,000 Genomes Project, as well as President Obama's PMI, as similar projects that have aimed to capitalize on the potential of large, whole-genome sequenced reference cohorts. According to EAPM, these projects "demonstrate the commitment at a national level" to using genomic data to advance personalized medicine and have fostered the belief in a European-wide alliance.
EAPM believes that MEGA would have a number of benefits for European research and, eventually, healthcare. For one, it would "reduce current inequalities in access to innovative technologies," the alliance wrote in the briefing. It would also encourage collaboration among European researchers and provide a database of "enormous lasting value," the wrote.
Other benefits include providing a vehicle for patient engagement on the use of health data, encouraging clinical education programs, galvanizing the European life science and health industry, and taking advantage of the "scale of Europe" combined with its predominantly social healthcare systems.
In the statement, the EAPM made clear reference to the PMI in the US as a further trigger for cooperation.
"If the US can pull off a project of such magnitude with its 300 million citizens then, surely, the EU can achieve the same with 500 million across 28 member states," EAPM wrote. "The gene genie is already out of the bottle and, regardless of who is running things politically on either side of the Atlantic, the stopper cannot be put back in," it wrote. "Now is the time for Europe to react to Obama's PMI with its own ambitious initiative."
To accomplish this, the alliance also envisions "harnessing Europe's assets." These include using European science infrastructures, such as the recently announced $7.6 billion European Open Science Cloud, the European Life-science Infrastructure for Biological Information (ELIXIR), and the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC).
EAPM stated that it believes that such cooperation would lead to greater use of Europe's biobanks, not to mention data standardization and interpretation.
The project already has support from some key European industry players. Mario Romao, digital health senior policy manager for Europe in Intel's global policy team, said that MEGA is in line with Intel's own 'All in One Day' concept, laid out earlier this year. Under 'All in One Day,' Intel aims to, by 2020, foster an environment where clinical teams can diagnose cancer or another genetically-based disease and conduct secondary analyses that identify causal genes and resulting pathways to disease expression within 24 hours.
"Accomplishing the vision of 'All in One Day' requires enhanced collaboration amongst researchers and healthcare professionals across Europe and beyond," said Romao. He said that advanced computing will be "one piece of the puzzle" toward achieving that, while other challenges, including regulatory, organizational, political, and financial, abound.
He added that MEGA is currently at the "very early stages of the concept," and said it would be premature to speculate further about the project beyond the policy briefing.
Jacques Beckmann, a clinical bioinformatician at the Swiss Institute of Bioinformatics in Lausanne, said that SIB is "definitely interested in taking part in such initiatives," like MEGA. He noted that there are several initiatives underway in Europe, including the Swiss Personalized Health Network, where SIB is already a partner, though these other efforts are not focused on whole-genome sequencing.
"The ground is fertile, there are many ideas and lots of things to do, but I tend to remain cautious and to avoid overselling," Beckmann said. "I also think it is essential to differentiate between research and clinical utility," he said. "The gap can be very wide. And thus, all which may be justified in a research context may not always be so in a clinical context."
Andres Metspalu, director of the Estonian Genome Center in Tartu, acknowledged that MEGA has already been discussed in some circles, and said that "everyone thinks that it is doable, if the EU will finance it."
"EU Biobanks have enough experience and large sequencing projects, such as Genomics England's 100,000 Genomes Project, are already underway or are coming," Metspalu told GenomeWeb. "We will hear more about this in September, when Brussels returns from vacation," Metspalu added. "Considering the competition from the US, the political support from Brussels should be greater than usual."