April 16, 2025

expert reaction to China being approved to access UK Biobank GP records

Scientists comment on China being approved to access half a million UK Biobank GP records. 

Rimesh Patel CEng, Former Chair of the Central London Network for the Institution of Engineering and Technology (IET) and Independent Cyber Security Specialist, said:

“The UK Biobank follows the current consent rules, where patients have provided consent for national and international sharing. Under the current law, as long as checks are made for valid research purposes with whom the data is being shared and how it is accessed, this is permitted and expected activity in the scientific community.

“As stated in the media coverage, UK Biobank uses a system where the data remains in the UK and data copies are not transferred. Therefore, while this is something to be aware of, this means the data controls are in place to stop data leaving the UK and prevent any misuse from occurring on the project end. For patients, this is their consented data that is being shared with the assumption that the data is sanitised so there is no personal impact on them.

“The protection of patient data is of utmost importance. In terms of public interest, the sharing of UK demographic data to support ‘high value’ research needs stronger oversight by the Government and health officials. COVID-19 was an eye-opener for the world; the same drug had different efficacy on different people, some due to genetics or perhaps to the individual’s localised environment. During COVID-19, it was the scientific research community that came together, and their efforts for ‘research diversification’ contributed to vaccine development. In this spirit, all countries should engage for the common good.

“The UK public should be provided with assurances by the Government that all data sharing treaties are enhanced to automatically cater for national interests as part of the vetting processes used by research companies, whilst not limiting the advancement of scientific research. Like all countries, the UK’s national interests in this data sharing exercise should consider what data is being shared and how it can affect any current or future national interests. Health officials should add safety measures for patient records and if these records are considered ‘high value’ for research, such as genome sequencing, provide an approved gateway method that assures national interests against state-actors, so that research for legitimate reasons can flourish.

“Projects like these are clearly important for humanity. In this digital globalised world, the Government and health officials have to think about implications beyond technical assurances before allowing data to be shared. The UK should now focus on balancing and optimising important aspects of data sharing outside the UK, especially if instances of data abuse are further identified that affect national interests.”

Professor Andrew Morris CBE PMedSci, Director of HDR UK, said:

“The UK is home to some of the world’s most exceptional examples of health data use, demonstrating the immense potential of harnessing data for public good. Initiatives like UK Biobank are setting global benchmarks in population health research.

“When using data for research it is essential to demonstrate trustworthiness – to be honest and reliable in how data are used in the quest to maximise the benefits to society and minimise the risks. Trusted Research Environments (TREs) and Secure Data Environments (SDEs) are one key enabler of trustworthy research. These function like secure research libraries where data is accessed in de-identified form without ever leaving a controlled setting, not only enabling an audit of “who is doing what with data” but also allowing team science to flourish without data being physically transferred across organisational or geographic borders.

“By maintaining clear, transparent processes and involving patients and the public throughout, we not only respect the trust they place in systems but also ensure that the benefits of health data research are shared widely. However, it is essential that the research community continue to review and strengthen these practices to ensure we have the best possible safeguards in place, especially as the research landscape evolves and new technologies emerge.

“International collaboration is a must for advancing global health research. When appropriate safeguards are in place as they are in TREs and SDEs along with measures to ensure ethical review of research projects, such collaboration drives innovation. This leads to new discoveries and improved treatments while ensuring patient data is handled with the utmost care. The high level of interest from scientists around the world is not surprising. It is, in fact, a testament to the strength and uniqueness of the UK’s health data resources. Global engagement enriches the scientific process, bringing diverse expertise to tackle the pressing health challenges of our time, which ultimately benefits patients everywhere.”

Emma Lagerstedt, Policy and Engagement Manager, Understanding Patient Data, said:

“The data contained in GP records is understandably regarded as sensitive, even when de-identified. Patients who participate in large cohort studies rightly expect their data to be safeguarded and for researchers to uphold the highest ethical standards. Given both the sensitivity of GP data and wider public concerns – such as those related to national security – greater transparency is essential. This includes clear, accessible information about how access to data is authorised, who has accessed it, and for what purpose. Demonstrating this level of transparency and trustworthiness is critical to maintaining public confidence in the use of patient data for research.”

John-Arne Røttingen, CEO, Wellcome, said:

“UK Biobank enables approved scientists around the world to access a unique set of de-identified health data, driving discoveries that will pave the way for better public health. UK Biobank takes data protection very seriously and has strict processes in place to monitor the access and use of the database.

“Wellcome has provided co-core funding to UK Biobank since its inception and supports its vision to advance health and enable new discoveries through data-driven, collaborative science.”

Dr Junade Ali, Fellow and cyber security expert at the Institution of Engineering and Technology, said:

“NHS data is a key national asset which played an essential role in the UK taking a world-leading position in finding treatments and vaccines to COVID-19. UK Biobank has obtained the explicit consent of patients to have their data processed, and it has pledged to anonymise it – although it is unclear to what extent de-anonymisation is possible by those not subject to UK laws on this.

“However, the public should always have confidence that their data is protected and not shared in a way where they risk losing control over it. It is therefore essential that data protection law continues to develop to allow access for legitimate research whilst also implementing powerful measures to ensure it remains subject to domestic data protection laws when shared.”

Nicola Perrin MBE, Board Member of UK Biobank and Chief Executive of Association of Medical Research Charities, said:

“Today’s press coverage makes it sound as though there will be a free-for-all on Chinese access to NHS data. This is simply not the case. It is important to be clear that any request for access goes through rigorous application and approval processes. Importantly, GP data will not be sent around the world, and data will only be accessed in UK Biobank’s Research Analysis Platform (a secure data environment).  International access does raise many important questions that need careful consideration but, as a UK Biobank Board member, I know how seriously the UK Biobank team take their responsibility to protect participants data. As the quotes from UK Biobank’s amazing participants make clear, they have consented for their data to be used, and understand that it is used by researchers around the world to improve human health.”

Professor Patrick Chinnery, Executive Chair, Medical Research Council (MRC; a founding funder of UK Biobank), said:

“UK Biobank is an exceptional resource for global health researchers, and the MRC is proud to be one of its original and ongoing funders. It was set up to enable international research, allowing scientists from around the world to apply for secure access to anonymised data from half a million volunteer participants, driving impactful scientific discoveries that shape the future of population health.”

“The findings coming out of UK Biobank-powered research are a testament to their managed access model which allows researchers internationally to accelerate the discovery of new drug targets, treatments and diagnostics. Their data protection procedures are comprehensive, and we have full confidence in how these are implemented.”

Prof 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. It is unfortunate that US and Chinese researchers are the major users of these data but this reflects the bureaucratic and financial hurdles facing UK researchers which limited their effective access. That is what we need to change”

A response from UK Biobank – A message to our participants: why researchers in China can access our data: https://www.ukbiobank.ac.uk/learn-more-about-uk-biobank/news/a-message-to-our-participants-why-researchers-in-china-can-access-our-data

Guardian article: https://www.theguardian.com/technology/2025/apr/15/revealed-chinese-researchers-access-half-a-million-uk-gp-records

Declared interests

Nicola Perrin is a Board Member of UK Biobank.

Dr Junade Ali: “No conflicts of interest.”

John-Arne Røttingen: “Wellcome is a founding funder of UK Biobank.”

Prof Andrew Morris: “Director of Health Data Research UK, the national institute for health data science; is Professor of Medicine and Vice Principal at the University of Edinburgh; is President of the Academy of Medical Sciences, has minority (<1.5%) shareholding in Aridhia Informatics and a small number of shares in GSK (<£5,000).”

For all other experts, no reply to our request for DOIs was received.