A message to our participants: why researchers in China can access our data 

You may have questions about news articles discussing why researchers in China are able to access UK Biobank. Here is some additional information, please get in touch if you would like to know more.

In response to the media, Professor Sir Rory Collins, Principal Investigator and Chief Executive, UK Biobank, said: 

"Half a million people volunteered to join UK Biobank so scientists around the world can tackle conditions such as cancer and dementia. All our 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. We follow Government guidance on who can use UK Biobank and have robust processes for secure access to the data that are supported by the Government and our funders."

Making a difference

UK Biobank was set up to drive biomedical health discoveries around the world. Since 2012 we have been sharing the de-identified health and lifestyle data of our volunteers with approved international researchers who are seeking to improve public health. Over 15,000 peer-reviewed scientific papers have been published as a result, demonstrating our position as a world-leading resource for finding better ways to prevent, treat and cure disabling and life-threating conditions, including heart disease, cancer and diabetes.   

Our participants are at the heart of everything we do and our Participant Advisory Group (PAG) meets frequently to help shape and influence UK Biobank’s work.

Karen from the PAG 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."

Val from the PAG said:

"I joined UK Biobank over 15 years ago, in the hope of helping future generations, by giving scientists around the world my data to make life-improving discoveries. I am proud to be a part of this. Our discussions at the PAG (Patient Advisory Group) meetings reassure me that the comprehensive layers and process in place around sharing our data are secure, while also allowing as many brilliant scientists as possible to use our data."

Our model

We welcome researchers from universities, charities and companies, wherever they are based in the world, if they are seeking to do health research in the public good. Currently, over 20,000 scientists in more than 60 countries are using our data for their research into health and disease.

Our processes

All researchers and institutions are carefully vetted before an application is approved. Our robust measures confirm whether they are a bona fide researcher working to improve public health and that they, their institution and the country in which they are based, are not facing any sanctions. We follow UK, EU and US guidance, use an automated third-party checking system and have regular conversations with the UK government to ensure that we are compliant. If Government policies change, we will take action to reflect this. We also undergo frequent audits and are currently the first UK organisation to go through NHS England’s audits to ensure we meet the criteria needed to safely and securely handle GP data.

In response to the media, the Government has confirmed its support for this position by issuing the following statement:

"National security is one of the key foundations of this government. Security and privacy considerations are always taken into account when UK health data is used to drive forward our understanding of diseases and advance scientific research. Health data is always anonymised, removing details that allow people to be identified, and only shared with legitimate researchers."

Support for our access model

Our access model is at the core of our founding funders’ vision for UK Biobank. 

John-Arne Røttingen, CEO, Wellcome (a Founding Funder of UK Biobank), 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."

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."

On the issue of risk of re-identification

There has been no known case of a UK Biobank participant being re-identified in the 13 years since we gave researchers access to data. We have multiple tools by which we can detect any threats to data security, and we would encourage all participants to be mindful of how much personal health information they share on social media. 

On Beijing Genomics Institute (BGI)

There are multiple subsidiary groups of this very large organisation and some of these are on a US, but not UK, trade sanction list that require specific licenses for US companies to work with them. The subsidiary that has access to UK Biobank is not on the US, UK or EU sanction list. 

Further statements from the PAG

Tim from the PAG said:

"I joined UK Biobank at the start and was always happy that my data was helping to make a difference to the global advancement of medical science. Last year I joined the PAG so now realise the amount of work and comprehensive layers of care involved to ensure that the data is secure whilst remaining accessible to as many brilliant researchers as possible."

Alan from the PAG said:

"I was enthusiastic to volunteer to be part of UK Biobank because I knew it would contribute greatly to medical science for generations to come. The information I received convinced me my personal data would be secure and that the procedures for vetting researchers and approving studies would be rigorous, honest and of the highest standards. Now as a member of the Participants’ Advisory Group (PAG) I have been privileged to learn how my data are secured and how it is used. I have no qualms or concerns that my initial trust and understanding are misplaced."

Jane from the PAG said:

"As a PAG member, I have been immensely impressed by the care that UK Biobank takes with security and accuracy. A large number of research studies have already taken place. I was initially concerned by the number of applications coming out of China, but was reassured by the fact that all proposals are very carefully considered by their access team, have to be in the interest of public health, all results have to be made publicly available, and no identifiable data of any kind can ever be accessed by the researcher. Given this, it is difficult to see how the nationality of the researcher should be a problem. Some of this research will lead to important medical advances – it would be petty and discriminatory to reject any request out of hand based only on the nationality of the applicant."

If you are a participant and have any questions about UK Biobank’s data use, please email us at ukbiobank@ukbiobank.ac.uk and we will be back in touch.