‘Race science’ group say they accessed sensitive UK health data

Exclusive: fringe network recorded boasting of securing data from UK Biobank trove donated by 500,000 volunteers
Revealed: International ‘race science’ network secretly funded by US tech bossTom Burgis, Hannah Devlin, David Pegg and Jason WilsonThu 17 Oct 2024 14.05 BSTLast modified on Thu 17 Oct 2024 14.16 BSTShareFringe researchers advocating “nefarious” theories that intelligence is based on race have obtained data from a trove of sensitive health information donated by half a million British volunteers, according to undercover footage.
Recordings made by the anti-racism campaign group Hope Not Hate show members of a “race science” network discussing UK Biobank data they claimed to have accessed. Some of the group have been blacklisted by the facility on the grounds they are “not bona fide” academics, but the footage suggests they may have circumvented its controls. It shows them saying they obtained a “large” haul of the data. One of their associates acknowledges they are “not meant to have that”.
Founded in 2003 by the Department of Health and medical research charities, UK Biobank holds the genetic information, survey responses, blood samples and medical records of 500,000 volunteers. The information it holds has been used to shed new light on diabetes, Parkinson’s disease and other illnesses.
UK Biobank says projects using its data must be “in the public interest”. Participants give consent for their information to be used, with identifying details removed, for “health-related research purposes”.
1:03Race science researchers discuss having access to UK Biobank data files – videoUntil recently, rather than having to use UK Biobank’s own platform, approved researchers were free to download datasets on to their own systems. Researchers sign a contract undertaking not to share data without authorisation.
The footage raises questions about whether the controls have been sufficient.
“This shocking news suggests an appalling failure of governance at multiple levels,” said Katie Bramall-Stainer, who, as the representative of GPs in the British Medical Association doctors’ union, wants tighter controls on health data. “Questions now need to be answered by UK Biobank and NHS England around how, when, where, why, with whom, and for what purpose, confidential data was shared.”
The undercover footage has been examined by the Guardian, which conducted further research alongside Hope Not Hate.
The group of which claims to have obtained UK Biobank data is led by Emil Kirkegaard. A Danish blogger and publisher, he runs the research arm of a secretive network called the Human Diversity Foundation.
View image in fullscreenA UK Biobank representative said it ‘does not consider Mr Kirkegaard to be a bona fide researcher’. Photograph: Dave Guttridge/UK Biobank/PAKirkegaard is a named author on more than 40 papers published in the journal Mankind Quarterly, a longstanding outlet for race science theories. The topics of Kirkegaard’s inquiries have included whether black Americans earn less than white Americans because of “average intelligence differences”, comparing penis size, testicle size and “breast-buttock preference” by race, and an attempt to show that in Denmark those with “Muslim names” have lower IQs.
The geneticist Adam Rutherford told the Guardian that Mankind Quarterly and similar periodicals were so discredited that it would be “career suicide” for a genuine academic to publish in them. Kirkegaard’s positions appear closer to racism than science. “Africans,” Kirkegaard wrote on his blog in July, “are prone to violence everywhere.”
Often referred to as “scientific racism”, race science emerged from 18th-century breakthroughs in medicine and biology, including Charles Darwin’s theory of evolution by natural selection. It is dismissed as pseudoscience by the National Institutes of Health, the main US medical research agency, which says race science “appropriates the methods and legitimacy of science to argue for the superiority of white Europeans and the inferiority of non-white people whose social and economic status have been historically marginalised”.
David Curtis, a genetics professor at University College London, said “unsophisticated analysis” of genetic data “could be used to support a racist claim” by “selectively reporting the findings”.
A UK Biobank representative said it “has continued to monitor and prevent attempts to access the resource by Kirkegaard and other researchers believed to be connected with him”. He added: “They are not bona fide researchers.” But he said the undercover footage “does not raise questions about UK Biobank’s controls”, so “there appears to be no UK Biobank data misuse relating to this organisation.”
Prof Rory Collins, the head of UK Biobank, said: “We are confident that our access procedures are working, but sadly we operate in a world where unethical people will seek to undermine this.”
He added: “We have robust data access processes that control who can access raw data.” He said “our extensive investigations” have not “found any evidence of these data being available to unapproved researchers”.
“The most likely conclusion that we can draw from the evidence presented by the Guardian is that these individuals are using publicly-available summary data to conduct their abhorrent research.”
However, two eminent geneticists questioned UK Biobank’s position, as did two health data experts. They pointed to terms the race science researchers used suggesting they had obtained individual participant data with names stripped out. The UK Biobank representative accepted that it there was “a possibility” that the race science researchers had “obtained raw, individual-level data”.
‘You’re not meant to have that’It was over smoked salmon and venison at a chic Notting Hill restaurant that the head of the Human Diversity Foundation’s media arm revealed the group had obtained UK Biobank data. Matthew Frost, a former religious studies teacher at a London private school, has told the Guardian he is no longer affiliated with the network.
But at the October 2023 dinner, he spoke of his ambitions for the organisation. Unaware of the camera hidden in the shirt button of the man sitting opposite, he said the team of researchers he was helping to raise money for had “big-ticket items” planned.
“They’ve managed to get access to the UK Biobank,” Frost said. “You’re not meant to have that.” To know more, Frost said, “talk to Emil”.
View image in fullscreenEmil Kirkegaard. He did not reveal who had helped him obtain the dataset. Photograph: YouTubeKirkegaard maintains that his politics are not “far right” but “heterodox”. His work, however, promotes racist ideas.
He has argued in favour of removing “immigrants already settled” in countries such as Denmark, writing: “I generally support policies that pay them to leave.” An advocate of eugenics, Kirkegaard has written that if technology allowed it, parents would be “silly not to … select against gayness”.
Nonetheless, Kirkegaard enjoys some influential connections. The recordings show him claiming that in 2019 he was among the “online dissidents” that the tech billionaire and rightwing donor Peter Thiel flew to Silicon Valley for discussions. Thiel did not respond to a request for comment.
A few days after the Notting Hill dinner, Frost arranged for the undercover researcher to speak with Kirkegaard, who explained why it was so hard to access the most sensitive data.
“Genetic datasets that you need for testing things with, say, ethnic differences in IQ or anything in that direction are all behind bars,” Kirkegaard said. He went on: “The only way we get these datasets is when some academic gets them and gives them to us under the table.” He added: “Not necessarily academics, sometimes private sector … taking a big risk for themselves.”
Do you have information about this story? Email [email protected], or use Signal or WhatsApp to message (UK) +44 7721 857 348.To gain access, Kirkegaard said applicants had to submit “all kinds of paperwork about how the data is stored and so on”. Trickier still, “you have to come up with some plausible sounding research proposal that covers the things that we want to do but also doesn’t go far enough that they’re just going to censor it”.
Kirkegaard brought up the case of an American academic called Bryan Pesta, whom the University of Cleveland dismissed after he was accused of misusing data from a US genomic databank. Pesta argued he was entitled to use the data for a paper he co-authored with Kirkegaard claiming to link ancestry to intelligence.
Asked about his involvement with Kirkegaard’s race science researchers, Pesta told the Guardian it was “limited to attending some of their online meetings out of my interest in the hard science behind potential genetic explanations for racial IQ gaps”, and editing one manuscript. Pesta said he had never “received, shared, or analysed any data from the UK Biobank”.
On 6 November 2023, Pesta joined a video call hosted by Kirkegaard. A dozen race science researchers were present on the call, which was being secretly recorded by Hope Not Hate.
Kirkegaard led a discussion that ranged from whether “high IQ southern gentlemen” in the US had “sex with slaves” to an examination of “wokeness and mental illness”. The next subject was genomics. “I believe someone downloaded the UK Biobank,” Kirkegaard said.
“Yes, it’s me who’s got the UK Biobank downloaded,” said a man whose name was displayed on screen as Simon Wright. A writer using that pen name has co-authored papers with Kirkegaard in fringe publications including Mankind Quarterly, alleging a link between race and IQ. “I’m already working with the IQ stuff,” Wright added. UK Biobank does not include volunteers’ IQ scores but does record their educational attainment.
“The thing about the UK Biobank files,” said Kirkegaard, “is that they’re so fucking large … a 300-gigabyte file.”
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Message us on WhatsAppShow moreKirkegaard did not reveal who had helped him obtain the dataset. He did not respond to questions from the Guardian.
“UK Biobank has a zero-tolerance policy on data misuse,” the representative said, “and were there to be evidence of misuse then we would take immediate action, based on breach of contract and/or data protection laws, and infringement of intellectual property rights.”
Angela Saini, the author of a book on race science, said: “If there have been friendly researchers who have passed them the data that way that’s a huge breach of standards and it needs to be investigated by UK Biobank. That’s a minimum that everyday people should be able to expect that their data isn’t used for nefarious purposes.”