Why responsible international data sharing can help us all

Professor Sir Rory Collins, CEO and Principal Investigator of UK Biobank, outlines the importance of sharing data responsibly and carefully with bright minds across the world to get results that will give us all a healthier future. 

A shortened version of this commentary is available in The Guardian's letters section.

Twenty years ago – around the same time as the first human genome was being sequenced – UK Biobank was established with the mission to create the most detailed source of health data for researchers worldwide. The dream became a reality thanks to the generosity of half a million volunteers from all walks of life across the UK. They provided their health and lifestyle data, and their consent for scientists working to advance public health and patient care to use these de-identified data to find new diagnostics, treatments and even cures.  

Our founding funders – including Wellcome and UKRI – understood that this vision could only be achieved by making the participants’ de-identified health data widely available. Right now, more than 20,000 researchers in over 60 countries are using UK Biobank data for their health-related studies, including several thousand from China, many of whom collaborate with British universities including the Universities of Oxford and Cambridge, the University of Edinburgh and Kings College London.  

Our model has proved to be the vital ingredient to the thousands of innovative research projects coming from UK Biobank’s data. Over 15,000 peer-reviewed papers have been published as a result, with this number growing year-on-year. By adopting this access model, the scientific discoveries that UK Biobank has enabled over the last 20 years have been unparalleled and have inspired others – including the US study AllofUs and the China Kadoorie Biobank – to make their data (including genetic information) more widely accessible to researchers on a worldwide basis.  

Researchers from all facets of academia, charity and industry, are using UK Biobank data to study the entire spectrum of human health, producing thousands of important and, in many cases ground-breaking, studies. This is translating into real world health impacts, including new ways to predict, prevent and target diseases.

For example, a team of Chinese scientists using UK Biobank data has found protein patterns that predict the onset of dementia more than a decade before formal diagnosis, bringing a blood test for this condition a step closer. UK Biobank data has also been used to create a simple, genetic score to detect those at higher risk of conditions including breast and prostate cancer, heart disease and strokes, enabling earlier and more effective intervention and prevention. Another finding has even changed the way doctors diagnose and treat diabetes, as researchers found that the incidence rate of Type 1 diabetes remains about the same up to at least age 60 years – previously thought to be only a disease developed in childhood. The pace of discovery is only increasing, as the imaginations of the world’s best scientists are given increasingly rich data, such as whole genome sequencing data. 

 

We fully understand that sharing people’s health data is highly sensitive and must be treated with the utmost care. Our participants are at the heart of everything we do. We have a participant group which meets frequently to help shape and influence UK Biobank’s work. We have strict and robust procedures in place, to review applications before access is approved, and to prevent deliberate or accidental misuse of the data. Last year we moved to our Research Analysis Platform, meaning researchers access the data in a secure cloud-based environment, strengthening our controls even further. Recognising the complexity and sensitivity of the issues, we monitor developments closely, have regular conversations with the UK Government and ensure that we are compliant and follow Government guidance on who can access the data. 

Ultimately, our participants have volunteered to advance health research. They have given their explicit consent for researchers from around the world to study their de-identified health data, and we know their satisfaction in seeing the results. Many have emphasised the importance of their GP data being analysed too, which is why we are currently undergoing the process of working with the NHS trying to access primary care data in accordance with the participants’ explicit consent.   

As with any large-scale database, a fine balance is needed to promote access, whilst also ensuring correct use and data privacy. Our protective measures have proven to be overwhelmingly successful at achieving this. The scientific discoveries that have been enabled, combined with the negligible levels of improper use over 20 years, demonstrates that UK Biobank navigates this balance successfully.  

Data locked away benefits no one, but when data are shared responsibly and carefully with bright minds everywhere, that’s when we get results that will give us all a healthier future.