With the revelation that the confidential health records of half a million British volunteers have been put up for sale on a Chinese website, we take a look at what the UK Biobank project has achieved – and why concerns have been raised.
What is the UK Biobank project?
The UK Biobank was launched in 2003. Between 2006 and 2010 it recruited half a million participants aged 40 to 69. They provided genetic data, clinical measurements, health information, biological samples and lifestyle data, and undergo regular follow-ups.
This means the UK Biobank has become an important resource for researchers who, since 2012, have been able to request access to anonymised data in order to examine the causes, prevalence and treatment of myriad diseases.
Has it been a success?
Thousands of research papers have been published based on UK Biobank data.
Prof Andrew Morris, the director of HDR UK – the national institute for health data science – said that among the key discoveries was the finding that four proteins in the blood could eventually help diagnose dementia in people before symptoms develop.
Last year the project celebrated having scanned the brains, hearts and other organs of 100,000 participants – an endeavour it is hoped will aid earlier detection and treatment of diseases and provide new insights into human ageing.
Such scans have already led to revelations, including that consuming even small quantities of alcohol is associated with changes to the size and structure of the brain, that diabetes can affect the structure of the heart, and that Covid-19 infections appear to damage the brain’s “smell centre”.
In recent months alone UK Biobank data has given rise to research that has suggested air pollution can accelerate the onset of a host of diseases, and it been used to help train an AI tool that can predict a person’s risk of more than 1,000 diseases.
However, Morris said the real achievement of UK Biobank had been the assembly of biosamples and data linked at scale for hundreds of thousands of participants.
“It is among the largest studies for imaging, protein biomarkers, genomics and more,” he said. “But not only that – it links all this together for investigation. The depth of research enabled by this across all disease areas is really unique and why it is heralded worldwide.”
Why is the UK Biobank in the news now?
On Thursday it was revealed that data belonging to UK Biobank participants was up for sale on three separate listings on the Chinese website Alibaba last week. At least one of the listings is thought to have contained data from all 500,000 volunteers. In all cases the data was “de-identified”, meaning names, addresses or precise dates of birth were not included.
While the records have since been removed, and no sales are thought to have been made, it is not the first time data protection concerns have been raised.
Last month the Guardian revealed numerous instances of participant health data being leaked online by researchers, which in some cases could be traced back to volunteers.
Prof Luc Rocher, of the Oxford Internet Institute at the University of Oxford, said the listings on Alibaba marked the 198th known exposure of UK Biobank data since last summer. “UK Biobank data is not just available for sale, it also remains available online for anyone to download today,” they said.
What has the UK Biobank said about the latest incident?
Prof Rory Collins, the chief executive and principal investigator of UK Biobank, has written to participants to reassure them that their personal identifying information in UK Biobank is “safe and secure”.
Collins said new security measures would be put in place, including restricting the size of files that can be exported from UK Biobank research platform by researchers in an attempt to “severely limit” their ability to export any de-identified participant data.
“In addition, we will conduct a comprehensive and forensic board-led investigation of this incident,” he wrote.
What have others said?
Experts have welcomed the swift removal of the listings from Alibaba.
Prof John Gallacher of the University of Oxford said: “As a ‘Biobanker’ I am reassured that the value of my small contribution to global health is jealously guarded.”
However, some have called for an investigation.
Morris said: “It is important that there is a full review.” He added that the trust of participants in how their data was handled was crucial to health research that used large de-identified datasets.
“The future of healthcare is increasingly data-dependent,” he said. “We must double down on implementation of secure systems to enable essential research that is responsible, trusted and can operate at scale.”
