Boffins score gene bonanza: EU countries pledge to share one million genomes by 2022

Cross-border databases to tackle fragmentation, speed drug R&D

Thirteen European countries have agreed to link up genomic databases in a bid to give boffins access to a research cohort of more than one million genomes by 2022.

The declaration commits the signatories - including the UK, Finland, Estonia and Spain - to work together to ensure secure cross-border access to genomic and other health data in the European Union.

The idea is to help speed up data-driven healthcare solutions through “a concerted effort to overcome data silos, lack of interoperability and fragmentation of initiatives across the EU”.

Genomic information is crucial for better understanding of diseases, as well as for creating targeted treatments. Having access to a larger and wider dataset should allow researchers to more easily identify and develop treatments for rare diseases, and help figure out if drugs will work better on certain groups of people.

Many countries are investing heavily in genome sequencing, along with biobanks and data infrastructure, but both the infrastructure and expertise are fragmented. The aim of the declaration is to speed things up by bringing those resources together.

The countries have set a goal of creating a research cohort of more than one million genomes and related health data, as well as “pooling analytical capabilities”.

The declaration has emphasised that such cross-border data flows need to happen in a “lawful, secure, appropriate and specific way” that complies with the incoming General Data Protection Regulation and protects the privacy of donors.

It stated the group will define a governance model of cooperation - particularly on the terms and conditions for distributed access to genomic data across borders - and develop a “coordinated data governance framework” to facilitate Europe-wide large-scale processing of health info.

They will also develop a secure infrastructure for data sharing or analysis and promote the use of open standards and data management systems so they are interoperable.

However, the elephant in the room is Brexit, which neither the declaration nor the accompanying statement mentioned.

The UK’s 100,000 Genomes Project - which reached its halfway point earlier this year - is highly regarded and widely seen as being a leader in the field of genomic data, and so ensuring continued data flows could prove crucial for this project.

There has been already much debate about how the UK can continue to ensure access to datasets and cross-border data flows - deemed crucial for business and national security activities - once it leaves the bloc.

The UK has consistently said it wants to gain an adequacy-plus decision from the EU, but because it will take the country’s other data retention and surveillance measures into consideration, it is far from a done deal. ®

Similar topics

Other stories you might like

  • Battlefield 2042: Please don't be the death knell of the franchise, please don't be the death knell of the franchise

    Another terrible launch, but DICE is already working on improvements

    The RPG Greetings, traveller, and welcome back to The Register Plays Games, our monthly gaming column. Since the last edition on New World, we hit level cap and the "endgame". Around this time, item duping exploits became rife and every attempt Amazon Games made to fix it just broke something else. The post-level 60 "watermark" system for gear drops is also infuriating and tedious, but not something we were able to address in the column. So bear these things in mind if you were ever tempted. On that note, it's time to look at another newly released shit show – Battlefield 2042.

    I wanted to love Battlefield 2042, I really did. After the bum note of the first-person shooter (FPS) franchise's return to Second World War theatres with Battlefield V (2018), I stupidly assumed the next entry from EA-owned Swedish developer DICE would be a return to form. I was wrong.

    The multiplayer military FPS market is dominated by two forces: Activision's Call of Duty (COD) series and EA's Battlefield. Fans of each franchise are loyal to the point of zealotry with little crossover between player bases. Here's where I stand: COD jumped the shark with Modern Warfare 2 in 2009. It's flip-flopped from WW2 to present-day combat and back again, tried sci-fi, and even the Battle Royale trend with the free-to-play Call of Duty: Warzone (2020), which has been thoroughly ruined by hackers and developer inaction.

    Continue reading
  • American diplomats' iPhones reportedly compromised by NSO Group intrusion software

    Reuters claims nine State Department employees outside the US had their devices hacked

    The Apple iPhones of at least nine US State Department officials were compromised by an unidentified entity using NSO Group's Pegasus spyware, according to a report published Friday by Reuters.

    NSO Group in an email to The Register said it has blocked an unnamed customers' access to its system upon receiving an inquiry about the incident but has yet to confirm whether its software was involved.

    "Once the inquiry was received, and before any investigation under our compliance policy, we have decided to immediately terminate relevant customers’ access to the system, due to the severity of the allegations," an NSO spokesperson told The Register in an email. "To this point, we haven’t received any information nor the phone numbers, nor any indication that NSO’s tools were used in this case."

    Continue reading
  • Utility biz Delta-Montrose Electric Association loses billing capability and two decades of records after cyber attack

    All together now - R, A, N, S, O...

    A US utility company based in Colorado was hit by a ransomware attack in November that wiped out two decades' worth of records and knocked out billing systems that won't be restored until next week at the earliest.

    The attack was detailed by the Delta-Montrose Electric Association (DMEA) in a post on its website explaining that current customers won't be penalised for being unable to pay their bills because of the incident.

    "We are a victim of a malicious cyber security attack. In the middle of an investigation, that is as far as I’m willing to go," DMEA chief exec Alyssa Clemsen Roberts told a public board meeting, as reported by a local paper.

    Continue reading

Biting the hand that feeds IT © 1998–2021