Response to highly misleading article in The Observer

Statement

An article was published in The Observer on Sunday 12 November 2023 which made highly misleading claims about inappropriate access to UK Biobank’s data. In response to the article, Professor Rory Collins, Principal Investigator and Chief Executive of UK Biobank, said: 

"The news article in The Observer portrays an extremely misleading account of what was actually communicated to UK Biobank participants when they were invited to join the study, and how UK Biobank considers applications for access to the de-identified data of participants (including to insurance companies). This was pointed out multiple times to The Observer but regrettably they have chosen to publish this false narrative. 

The trust of participants in UK Biobank is of paramount importance. As such we have been meticulously transparent with participants about how their data are used, and it is factually wrong and damaging to suggest otherwise. We are strongly urging all UK Biobank participants who have read the Observer article to treat it with extreme caution and to read the facts as set out below. 

All participants in UK Biobank gave consent for their de-identified data to be used by approved researchers from all types of academic and commercial organisations for health-related research that is in the public interest. This was made clear to each participant in the information leaflet that was provided to them, and the consent form that they signed, when they agreed to join the study. It was also made explicit that identifiable information about any participant would not be given to anyone (including, specifically, not to insurance companies, employers, or the police), and it never has been.  

[References in The Observer to earlier language on sharing ‘anonymised data’ are in a long-outdated document from 2003 that was never used for recruitment, was superseded following further consultation with the public, ethicists and others before recruitment of any participants started in 2006, and never formed any part of the information leaflet or consent form provided to any participants. This fact was pointed out explicitly to the journalist in writing, so it is particularly disingenuous of them to suggest otherwise.] 

With regards to assessing research applications, in accordance with the consent given by participants, all applications from researchers are carefully assessed to ensure that they involve health-related research which is in the public interest. Researchers from insurance companies are treated like all other commercial or academic researchers, following specific consideration of this issue by an expert data access committee with independent research ethics input.  

For example, research that involves more accurate identification, calibration and assessment of the risk of some particular disease would clearly be consistent with being health-related and in the public interest. Likewise, so too would be research that identified certain types of behaviour which increased risk, and so might be avoidable. If there is any uncertainty as to whether a researcher is suitably qualified, or if the work could benefit human health, then the expert committee applies further scrutiny before deciding whether or not to give approval. Each of the examples mentioned in the Observer article went through this extensive vetting process and met the required tests of involving suitably qualified researchers and being health-related research in the public interest. 

Since the UK Biobank database became available to researchers in 2012, over 4,500 research applications have been approved from around the world. We actively monitor use of the data by the researchers and have found no evidence of any misuse. More than 9,000 peer-reviewed scientific papers have emerged from these projects, and UK Biobank has established itself as one of the world’s most important resources for identifying better ways to prevent and treat a wide range of disabling and life-threating conditions (such as, cancers, heart attacks, strokes, and dementia).  

It is extremely disappointing and highly regrettable that, even after the above information was provided to the newspaper, they chose to publish such an irresponsible piece which paints an entirely false picture of reality."

Contact details

If participants would like to discuss any of the issues that have been raised, please contact UK Biobank’s Participant Resource Centre so that we can provide you with accurate information. 

Freephone: 0800 0 276 276 (9am-5pm, Monday-Friday)

Email: UKBiobank@ukbiobank.ac.uk