UK Biobank Data

Emily Darlington Excerpts

Thursday 23rd April 2026 Commons Chamber

[Ian Murray]

I thank the shadow Minister for the way in which he has approached this matter—indeed, with his expertise as a former COO of a tech company. Let me answer his questions directly.

As we understand it—this is from UK Biobank, which is not a Government organisation, but an independent charity—UK Biobank cannot be entirely sure about the data that was included, because it was taken down from the Alibaba websites. However, we do know that there is no personal data in it, in terms of identifiers. I can give an indication of some of the characteristics that are potentially in UK Biobank datasets, which include gender; age; month and year of birth; assessment centre data; attendance date; socioeconomic status; lifestyle habits; measures from biological samples such as haematology and biochemistry—this is the kind of stuff that has been detected—online questionnaires data; sleep; diet; work environment; mental health, and health outcomes data.

The shadow Minister asked whether there are identifiers for individuals. There are not, but it would be wrong for me to give 100% assurance—and UK Biobank cannot do so—that someone could not be identified from the data. However, it would have to be used in a very advanced way in order to do that.

The hon. Gentleman asked about the three institutions. They have been immediately banned from the platform, and that will be permanent. The Biobank only works with accredited organisations, institutions and individual academic researchers, and the accreditation system is there to make sure that those using it are doing so for valid purposes. It has been running since 2012 and has been used for hundreds of thousands of different analyses. It works incredibly well and will continue to do so.

Let me explain how the system works and where the problem has arisen. In 2024, the system was changed from Biobank issuing datasets to accredited organisations and academic researchers to having all the information on the Biobank platform. When people access the data, they do their analysis and then download it. The system also allows people—although, contractually, accredited organisations are not supposed to do this—to download datasets. We understand from Biobank that what has probably happened is that the three institutions have downloaded the datasets themselves. As yet, we are unclear as to how those datasets ended up on the website, but UK Biobank, along with institutions and organisations attached to the Government, is working through that at the moment.

The hon. Gentleman asked for reassurance that Russia, Iran and North Korea are not accredited, and I understand from UK Biobank that they are not. He also mentioned hostile actors. UK Biobank is very strict about who has access, because there is an accreditation process. Secondly, although the three institutions are Chinese in this particular instance, the Chinese Government and Alibaba have been very proactive in helping us, through the British embassy in Beijing, to take down and whack-a-mole anything else that comes up, and they are currently going through that process. Yale University had its accreditation suspended for a breach of data, so this is not a country-specific issue. It just so happens that, in this particular case, the three institutions were Chinese. I think that answers the shadow Minister’s questions.

[Emily Darlington (Milton Keynes Central) (Lab)]

Health datasets of the size that UK Biobank has are incredibly important, because they allow us to find answers to the huge health challenges that many of us face, whether that is pain, as the Minister referred to, dementia or heart conditions. My concern is that this breach will make people think twice before donating their data. That could have a huge impact on our ability to treat conditions right across the world, but particularly here in the UK. The scientific community has always worked across borders and collaborated, whether that is with Europe, Canada, the US or even China. Given that it is only through these datasets that we can make medical breakthroughs, can the Minister reassure people who are thinking about participating that the protections that he, UK Biobank and other platforms of this kind are putting in place will absolutely protect people in the future?

[Ian Murray]

My hon. Friend makes an incredibly important point. I will say from the Dispatch Box that we should encourage more participation in UK Biobank. It is a global leader in research and is funded by the Wellcome Trust and the Medical Research Council. It also receives significant funding from Cancer Research UK, the British Heart Foundation and the National Institute for Health and Care Research. That shows the breadth of research that it does on all the key diseases that we suffer from in this country, and it is resolving some of these problems. Chinese researchers are making significant progress on diseases such as Alzheimer’s. Biobank is a global platform, and it is very much welcomed as a research resource. We should encourage the public to make sure that they can volunteer their data, so that the health of all of us is improved as a result.