Your report (Revealed: Chinese researchers can access half a million UK GP records, 15 April) fails to recognise the importance of data in advancing health research, when shared safely, securely and on a global scale. UK Biobank was set up 20 years ago by the Medical Research Council and Wellcome with the mission to create the most detailed source of health data for researchers worldwide. The dream became a reality thanks to half a million volunteers across the UK.
Researchers from academia, charity and industry, and from more than 60 countries, including China, are using UK Biobank data to study the entire spectrum of human health, producing thousands of groundbreaking studies. This is leading to new ways to predict, prevent and target diseases.
Our participants volunteered to advance health research. They have given their explicit consent for researchers around the world to study their de-identified health data, and we know their satisfaction in the results. Many have emphasised the importance of their GP data being analysed too, which is why we are now working with the NHS 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 while ensuring data privacy. Our protective measures have been overwhelmingly successful at achieving this aim. The scientific discoveries that have been enabled, combined with the negligible levels of improper use over 20 years, demonstrate that UK Biobank navigates this balance successfully.
Data locked away benefits no one, but when data is shared responsibly and carefully with bright minds everywhere, we get results that will give us all a healthier future.
Prof Rory Collins
Chief executive and principal investigator, UK Biobank
