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A group of researchers advocating controversial "race science" theories has reportedly obtained sensitive data from the UK Biobank, a resource containing health information from 500,000 British volunteers. According to undercover footage obtained by the anti-racism group Hope Not Hate, members of this network discussed their alleged access to the data, which is protected under strict protocols. The footage raises concerns about whether the group has circumvented the Biobank's controls, with one member admitting they were "not meant to have that."

 

 

UK Biobank, established in 2003 by the Department of Health and various medical research charities, holds genetic information, medical records, and other sensitive data provided by participants. Its resources are intended to be used solely for health-related research in the public interest. Approved researchers sign agreements preventing unauthorized data sharing.

 

The footage, however, suggests that some individuals advocating discredited race-based intelligence theories may have bypassed these safeguards. "This shocking news suggests an appalling failure of governance at multiple levels," said Katie Bramall-Stainer, a representative of the British Medical Association, calling for tighter controls on health data.

 

Leading the group of researchers is Emil Kirkegaard, a Danish blogger and publisher associated with the Human Diversity Foundation. He has published over 40 papers in *Mankind Quarterly*, a journal notorious for promoting race science theories. Kirkegaard’s work includes studies on topics such as racial intelligence differences and controversial comparisons of physical attributes across ethnic groups. Despite his claims of conducting legitimate research, Kirkegaard's positions have been criticized as overtly racist, with the geneticist Adam Rutherford warning that publishing in such outlets is “career suicide” for any credible academic.

 

Race science emerged from the 18th-century evolution of biological studies but is now widely condemned as pseudoscience. The National Institutes of Health (NIH) in the United States has stated that race science exploits scientific methods to argue for racial superiority. It appropriates the authority of legitimate research to support discriminatory ideologies. David Curtis, a genetics professor at University College London, has voiced concerns that unsophisticated analysis of genetic data could be selectively reported to support racist claims.

 

UK Biobank has acknowledged monitoring and blocking attempts by Kirkegaard and others to access its data, maintaining that its procedures are robust. “We are confident that our access procedures are working,” said Professor Rory Collins, head of UK Biobank, although he recognized that unethical individuals might try to undermine these systems. While the organization insists there is no evidence of data misuse, two eminent geneticists and health data experts questioned this conclusion, speculating that the race science group may have acquired raw, individual-level data.

 

The recordings obtained by Hope Not Hate reveal that in a 2023 meeting, Matthew Frost, head of the media arm of the Human Diversity Foundation, admitted over dinner that his team had obtained the UK Biobank data. “You’re not meant to have that,” he acknowledged. In a separate conversation, Kirkegaard explained the challenges of accessing such sensitive data, claiming that it requires academics willing to "take a big risk" to share it secretly.

 

The situation has sparked outrage among academics and anti-racism campaigners. Angela Saini, an author who has written extensively on race science, emphasized that any breach of data standards must be thoroughly investigated. "That’s a minimum that everyday people should be able to expect — that their data isn’t used for nefarious purposes," she said.

The controversy has placed UK Biobank’s data access procedures under intense scrutiny, highlighting the ongoing challenges of ensuring the ethical use of sensitive health information in the era of advanced genetic research.

 

Based on a report from the Guardian 2024-10-19