"'Race science' group obtained vast cache of UK health data, footage suggests

Fringe 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.

- Tom Burgis, Hannah Devlin, David Pegg, Jason Wilson

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".

Until 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.