The head of UK Biobank has issued assurances about the safety of the platform’s data following an investigation by a leading national newspaper.
The Guardian published an investigation revealing that confidential de-identified data from UK Biobank medical research had been leaked online dozens of times, last Saturday (March 14).
On the same day, chief executive and principal investigator of UK Biobank, Professor Sir Rory Collins, countered the findings in a message to participants stating: ‘I want to reassure you that your personal information in UK Biobank is safe.’
The Guardian, worked with a Biobank volunteer to analyse one of the leaked datasets and was able to identify what appeared to be the volunteer’s extensive hospital records — using only their month and year of birth and details of a major surgery they had undergone.
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Sir Rory, however, countered these revelations saying: ‘All UK Biobank data provided to researchers are ‘de-identified’. This means that the data do not contain personally identifying information.’
‘We know the possibility of your data being identified can never be completely removed, but it would require someone to have specific, matching information from another source that they knew was personal to you.’
This was the case with The Guardian’s investigation, explains Sir Rory, ‘The participant featured in the article chose to give specific, personal, health information to The Guardian, [who] then cross-referenced this information with UK Biobank data to establish that the person is a participant.’
‘This is not a failure of our approach to data confidentiality because the participant shared the information to identify themselves. As with any personal information, we recommend always being careful not to reveal specific details about ourselves on social media or websites.’
Sir Rory also emphasised that more than 20,000 scientists have been approved to use UK Biobank’s de-identified data and these unintentional leaks only occurred in a small proportion of cases.
When explaining how the leaks happened, Sir Rory stated: ‘As part of their work, researchers may write computer instructions, or code, to assess patterns in data.’
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‘Scientific journals often require researchers to publish this code, so that other researchers can check and replicate their methods. Researchers typically publish the code on websites known as code repositories, which are designed for technical users.’
‘When publishing this code, a small proportion of researchers have unintentionally included portions of de-identified UK Biobank data,’ he added.
Although its data — including those in the leaks — are de-identified before being made available to researchers, UK Biobank does not want them accessed by anyone who has not gone through its access review process.
It has, therefore, taken steps to help researchers avoid uploading any de-identified data to code repositories, and to ensure that any such data are removed rapidly if this occurs. This includes removing them from the code archive website GitHub, mentioned in The Guardian.
UK Biobank continues to monitor the situation and:
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Founded in 2003 by the Department of Health and medical research charities, UK Biobank holds genome sequences, scans, blood samples and lifestyle information from 500,000 volunteers.
It first made data available in 2012, it is one of the world’s most comprehensive stores of health information and is credited with driving breakthroughs in cancer, dementia and diabetes research. Last month, the government extended Biobank’s access to volunteers’ GP records.
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UK Biobank addresses data leak controversy – thepharmacist.co.uk
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