Revealed: Chinese language researchers can entry half 1,000,000 UK GP data | Information safety

Researchers from China are to be allowed entry to half 1,000,000 UK GP data regardless of western intelligence businesses’ fears in regards to the authoritarian regime amassing well being information, the Guardian can reveal.

Preparations are underneath approach to switch the data to UK Biobank, a analysis hub that holds detailed medical data donated by 500,000 volunteers. One of many world’s largest troves of well being information, the ability makes its data out there to universities, scientific institutes and personal corporations. A Guardian evaluation reveals one in 5 profitable functions for entry come from China.

For the previous 12 months, well being officers had been assessing whether or not further safeguards had been wanted for affected person data when added to the genomes, tissue samples and questionnaire responses held by UK Biobank. Private particulars corresponding to names and dates of delivery are stripped from UK Biobank information earlier than it’s shared however consultants say that in some circumstances people can nonetheless be recognized.

MI5, the UK Safety Service, has warned that Chinese language organisations and people granted entry to UK information will be ordered by Chinese language intelligence businesses “to hold out work on their behalf”. However UK Biobank informed the Guardian that the NHS unit answerable for well being information had in latest weeks cleared it to grant Chinese language researchers entry to GP data.

As Keir Starmer’s ministers court docket Beijing in the hunt for financial progress, the choice avoids crossing a rising superpower that has made biotech prowess a precedence. UK-China relations already face exams over the destiny of a Chinese language-owned metal plant in Scunthorpe and plans for brand new guidelines on overseas interference campaigns.

“Safety and privateness concerns are all the time taken into consideration when UK well being information is used to drive ahead our understanding of ailments and advance scientific analysis,” a authorities spokesperson mentioned. Well being information was “solely shared with professional researchers”, they added.

Chi Onwurah, a Labour MP who chairs parliament’s science and expertise committee, mentioned: “UK Biobank is a gigantic success and world medical analysis is all the higher for it.” However she added: “We’d like a government-wide technique that offers individuals confidence that they’ve management of their information, that their information is just ever shared securely and responsibly, and that displays the realities of geopolitics and the potential for dangerous actors to make use of our information for ailing.”

Approving entry to affected person data

Of the 1,375 profitable functions for entry to UK Biobank information, 265 got here from China, or virtually 20%, second solely to the US, based on a Guardian evaluation of its printed data. Chinese language scientists have used UK Biobank information to grasp the consequences of air air pollution and to identify organic markers that might predict dementia.

Final 12 months, UK Biobank accredited entry for a analysis challenge on ageing by a unit of the Chinese language genetics firm BGI. The US, against this, has blacklisted BGI subsidiaries, barring Individuals from exporting to them.

Joe Biden’s authorities justified the restrictions in 2023, saying it had data indicating that BGI items’ “assortment and evaluation of genetic information poses a big danger of contributing to monitoring and surveillance by the federal government of China, which has been utilised within the repression of ethnic minorities in China”. It additionally claimed “the actions of those entities regarding the assortment and evaluation of genetic information current a big danger of diversion to China’s navy applications”.

These had been “unsubstantiated allegations”, a BGI consultant mentioned. “We now have by no means undertaken genetic surveillance of anyone. BGI doesn’t have interaction in unethical practices and doesn’t present gene expertise for surveillance. BGI doesn’t condone and would by no means be concerned in any human rights abuses.” The corporate dismissed claims the navy may entry information, saying its analysis “is undertaken for civilian and scientific functions solely”.

A UK Biobank consultant mentioned it was “regularly in dialogue” with MI5 and different state businesses about using its information, together with by BGI.

Regardless of objections from some GPs, in October Wes Streeting, the well being secretary, gave directions to press forward with the switch of affected person data for consenting volunteers to UK Biobank and different analysis hubs.

“Entry will solely be for nations accredited by NHS England,” Michael Chapman, a senior NHS official, informed UK Biobank’s convention in December, including that approval can be primarily based on “safety concerns” and nations’ information safety.

NHS England, the physique that manages the well being service and oversees using well being information, has in latest weeks audited UK Biobank’s processes for sharing information internationally, together with the way it assesses functions from China, a consultant of the analysis hub mentioned. UK Biobank handed the audit, the consultant mentioned, so Chinese language researchers would be capable of apply for entry to the GP data.

NHS England mentioned: “Any approval of entry to private information from abroad territories requires information recipients to adjust to their tasks” underneath UK information regulation “and is saved underneath overview if circumstances change”.

China is ‘growing the world’s largest bio database’

Information troves corresponding to UK Biobank “had been set as much as encourage analysis worldwide”, says a leaked Might 2024 NHS England presentation on policing entry to GP data, “however the world image has since modified”.

Yves Moreau, a geneticist who has labored on initiatives utilizing information from UK Biobank and praises it as a “world class” useful resource, mentioned China’s rulers “regard genomic information and different well being information as strategic”. He mentioned it was “cheap to fret about China vacuuming such information from all over the world to strengthen its biotech sector”.

Past industrial benefits, intelligence sources say well being information will be helpful in espionage if anonymisation will be damaged. Consultants say it might be doable to match public details about a person’s medical remedy with anonymised affected person data to establish who they consult with. UK Biobank’s consultant mentioned it had “no proof of anybody being recognized”.

After China adopted new laws in 2017 to implement cooperation with the regime’s spies, MI5 warned custodians of British private information that the nationwide intelligence regulation “could have an effect on the extent of management you’ve got over your data and belongings as you have interaction with Chinese language people and organisations, particularly if you happen to work in an space that’s of curiosity to the Chinese language state”.

China is “growing the world’s largest bio database”, Edward You, then a prime US intelligence officer specialising in new applied sciences, mentioned in 2021. “As soon as they’ve entry to your genetic information, it’s not one thing you may change like a pin code.”

Privateness campaigners at medConfidential requested UK Biobank final 12 months “whether or not Biobank continues to ship British residents’ genetic and (NHS) affected person information to China or different ‘hostile states’.” They added: “Nobody needs to be glad that there’s nonetheless no readability on precisely what affected person information Biobank has disseminated to what researchers the place, regardless of this being a relentless query for a number of years.”

Till final 12 months, UK Biobank allowed researchers to take copies of its information. Recipients agreed to destroy it as soon as their initiatives had been completed however there was no means to make sure they did. In October, the Guardian revealed {that a} fringe group selling racist pseudoscience claimed to have entry to UK Biobank information. UK Biobank has now switched to a system the place researchers entry information inside its personal platform. Its consultant mentioned entry to GP data can be by way of this platform solely.

Prof Sir Rory Collins, UK Biobank’s chief govt, mentioned: “All our volunteers have given express consent for researchers to check their de-identified well being information, and plenty of have emphasised the significance of their GP information being analysed.”