Patient Data: Research

Lord Tarassenko Excerpts

Thursday 10th September 2026 Lords Chamber

[Lord Tarassenko (CB)]

My Lords, I am very grateful to my noble friend Lord Patel for securing this timely debate, in which I only have time to speak about UK Biobank. I declare an interest, as I have been not only a participant since 2007 but also a co-investigator in a research study analysing UK Biobank data to develop AI algorithms for the early detection of atrial fibrillation.

Ahead of this debate, there have been some very biased, negative briefings about UK Biobank—a not-for-profit charity—with multiple claims backed by no evidence whatever. UK Biobank is a visionary project in modern science, admired the world over. It has assembled a unique dataset from 500,000 UK volunteers. Over 22,000 scientists have been approved to analyse the data, contributing to 18,000 peer-reviewed papers. Now, we all know that access to UK Biobank data was offered for a very short period in April on a Chinese e-commerce website. There was swift action to deal with the data breach and the advice from China was that there had been no sales of data.

Since mid-2024, Biobank has been making a transition to its data being available only within a trusted research environment, a TRE, with an airlock. The data from UK Biobank does not contain any personally identifying information. It is de-identified. No participant has ever been re-identified without their active co-operation. All participants were informed of the data breach in China and given the opportunity to ask for their data to be removed. The number of those who did so is staggering: 344 out of 500,000 participants, less than 0.1% of the total number of participants.

This voter confidence, I believe, stems not only from the altruism of the participants but from the awareness that UK Biobank has already enabled new diagnostics and treatments that are saving thousands of lives: for example, through polygenic risk scores being added to heart disease risk measurement, through non-invasive diagnosis of fatty liver disease and through near real-time automated cardiac MRI analysis.

The current UK Biobank model for patient data research could be scaled up as a result of the introduction of the single patient record. I hope that the Minister will be able to confirm that the NHS Modernisation Bill will make this possible.