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Wednesday, April 16, 2025

UK Biobank responds to fears over Chinese access to NHS data

 Access to UK Biobank data by researchers based in China has sparked headlines in the UK about potential security concerns, but the risks have been overblown, according to the research organisation.

The concerns were first raised in The Guardian, which highlighted that one in five requests to access the data is from Chinese scientists, and comes as the medical records of half a million de-identified NHS patients are due to be integrated with the UK Biobank's repository of patient samples.

That has been held up as a key step in unlocking the power of the resource for medical research, but The Guardian said UK security service MI5 had warned that Chinese research teams may be instructed by intelligence agencies to "carry out work on their behalf."

Earlier this month, the UK government revealed a £600 million ($764 million) plan to create a centralised Health Data Research Service (HDRS) that will serve as a gatekeeper for researchers seeking access to anonymised NHS patient data – a move that has been welcomed by the biopharma industry.

Professor Sir Rory Collins, principal investigator and chief executive of UK Biobank, told The Guardian that all its 500,000 volunteers "have given explicit consent for researchers to study their de-identified health data, and many have emphasised the importance of their GP data being analysed."

The organisation is collecting only coded GP data about diagnoses, prescriptions, and referrals – never any confidential notes or letters – and removes all information that could identify individuals before sharing the data with vetted researchers.

It has previously maintained that adding GP data will "roughly double the cases of depression and dementia that can be identified, as well as allowing detection of less severe cases at an earlier stage."

One member of the UK Biobank's Participant Advisory Group (PAG), called Val, said: "As a participant of UK Biobank and member of the advisory group, I want our data to be available to scientists around the world. In order for the data to be productive, we need to allow access, and I am confident that UK Biobank has robust processes in place that ensures our data is secure and appropriately used and ultimately contributing to health improvements worldwide."

UK Biobank said that currently over 20,000 scientists in more than 60 countries are using its data for their research into health and disease.

Professor Sir John Hardy, group leader at the UK Dementia Research Institute at UCL, said: "Making data freely available is what drives progress and, as long as confidentiality is maintained, we should see this in that light."

He added: "It is unfortunate that US and Chinese researchers are the major users of [this] data, but this reflects the bureaucratic and financial hurdles facing UK researchers, which limited their effective access. That is what we need to change."

https://pharmaphorum.com/news/uk-biobank-responds-fears-over-chinese-access-nhs-data

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