Fringe researchers advocating “horrific” 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 British Biobank data they claimed they had access to. Some of the group have been blacklisted by the facility on the grounds that they are “not bona fide” academics, but the footage suggests they may have circumvented its controls. It shows they say they got a “huge” collection of the data. One of their associates admits they are “not meant to have it”.
Established 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 contains has been used to shed new light on diabetes, Parkinson’s disease and other diseases.
UK Biobank says projects using its data must be “in the public interest”. Participants give permission for their information to be used, with identification details removed, for “health-related research purposes”.
Until recently, rather than using UK Biobank’s own platform, approved researchers were free to download datasets onto their own systems. Researchers sign a contract pledging not to share data without authorization.
The footage raises questions about whether the controls were adequate.
“This shocking news points to an appalling failure of governance at multiple levels,” said Katie Bramall-Stainer, who, as the representative of general practitioners in the British Medical Association’s doctors’ union, wants tighter control over health data. “Questions must now be answered by UK Biobank and NHS England about how, when, where, why, with whom and for what purpose confidential data was shared.”
The undercover footage was investigated by the Guardian, who conducted further research with Hope Not Hate.
The group of race science researchers, who claim to have obtained UK Biobank data, is led by Emil Kirkegaard. A Danish blogger and publisher, he manages the research department of a mysterious network called the Human Diversity Foundation.
Kirkegaard is a named author on more than 40 papers published in the journal Mankind Quarterly, a longtime outlet for race science theories. The topics of Kirkegaard’s inquiries included whether black Americans earn less than white Americans because of “average intelligence differences”, compared penis sizetesticle size and “breast preference” by race, and an attempt to show that in Denmark those with “Muslim names” have lower IQs.
Geneticist Adam Rutherford told the Guardian that Mankind Quarterly and similar journals were so discredited that it would be “career suicide” for a genuine academic to publish in them. Kirkegaard’s positions seem closer to racism than science. “Africans,” Kirkegaard wrote on his blog in July, “everywhere is prone to violence.”
Often referred to as “scientific racism,” racial 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 American medical research agency, which say race science “applies 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 has historically been marginalized”.
David Curtis, a genetics professor at University College London, said “unsophisticated analysis” of genetic data “can be used to support a racist claim” by “selectively reporting the findings”.
A UK Biobank representative said it “continued to monitor and prevent attempts to access the resource by Kirkegaard and other researchers believed to be connected to 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 does not appear to be any UK Biobank data misuse linked to this organisation.”
Prof Rory Collins, the head of UK Biobank, said: “We are confident that our access procedures work, but unfortunately we operate in a world where unethical people will try to undermine them.”
He added: “We have robust data access processes that control who has access to raw data.” He said “our extensive investigations” had not found “any evidence that this data is available to non-approved researchers”.
“The most likely conclusion we can draw from the evidence presented by the Guardian is that these individuals are using publicly available summary data to conduct their nefarious research.”
However, two leading geneticists questioned UK Biobank’s position, as did two health data experts. They referred to terms used by race science researchers that suggest they obtained individual participant data with names redacted. The UK Biobank representative accepted that there was “a possibility” that the race science researchers had “obtained raw, individual-level data”.
‘You’re not meant to have this’
It was over smoked salmon and venison at a posh 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 private school in London, told the Guardian he was no longer affiliated with the network.
But at the dinner in October 2023, he spoke about his ambitions for the organization. Unaware of the camera hidden in the shirt button of the man sitting opposite, he said the team of researchers he helped raise money for were planning “big-ticket items.”
“They managed to gain access to the UK Biobank,” said Frost. “You’re not meant to have it.” To know more, Frost said, “talk to Emil”.
Kirkegaard maintains that his politics is not “far right” but “heterodox”. However, his work promotes racist ideas.
He argued in favor of removing “immigrants already settled” in countries like Denmark, writing: “I generally support policies that pay them to leave.” A proponent of eugenics, Kirkegaard did writing that if technology allowed it, parents “would be stupid not to … choose against gayness”.
Nevertheless, Kirkegaard enjoys some influential connections. The recordings show him claiming that in 2019 he was one of the “online dissidents” that tech billionaire and right-wing 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 is so difficult to access the most sensitive data.
“Genetic data sets that you need to test things with, say, ethnic differences in IQ or anything along those lines are all behind bars,” Kirkegaard said. He continued: “The only way we get these data sets is when some academic gets them and gives them to us under the table.” He added: “Not necessarily academics, sometimes the private sector … taking a big risk for themselves.”
To gain access, Kirkegaard said applicants must submit “all kinds of paperwork about how the data is stored and so on.” Even harder, “you have to come up with a credible research proposal that covers the things 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 named Bryan Pesta, who was fired from the University of Cleveland after being accused of misusing data from an American genomic database. Pesta argued that he was entitled to use the data for an article 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 to one editing manuscript. Pesta said he had never “received, shared or analyzed any data from the UK Biobank”.
On November 6, 2023, Pesta joined a video call hosted by Kirkegaard. A dozen race science researchers were present on the call, which was 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 investigation into “wokeness and mental illness”. The next subject was genomics. “I believe someone downloaded the UK Biobank,” Kirkegaard said.
“Yes, it’s me who downloaded the UK Biobank,” said a man whose name was shown on the screen as Simon Wright. An author using that pen name is a co-author papers with Kirkegaard in fringe publications, including Mankind Quarterly, asserting 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 records their educational attainment.
“The thing about the UK Biobank files,” Kirkegaard said, “is that they’re so bloody big… a 300-gigabyte file.”
Kirkegaard did not disclose who helped him obtain the data set. He did not respond to questions from the Guardian.
“UK Biobank has a zero-tolerance policy on data misuse,” the representative said, “and should there be evidence of misuse, 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 were friendly researchers who passed on the data in this way, it is a huge breach of standards and should be investigated by the UK Biobank. It is a minimum that everyday people should be able to expect that their data will not be used for nefarious purposes.”
