Agreement: I Agree Body: Dear Editor, It is promising that there are individuals like the Professor involved when the likelihood this happening again is high. He says ' Rebuilding that trust requires governance infrastructure as rigorous and ambitious as the research it enables'. Many of us will be saying 'if only' . If only those in control of setting up the infrastructure and using donated data had the same values as he does. So often citizens' altruism has been exploited but experience shows people will still donate even if cynical about the promises made and assurances about farcical legal structures . Maybe another 'if only' but part of that infrastructure should be to giving everybody the right to access information accessed on the trail used for their individual donation That would concern organisations enough to realise breaches would be made public by the public and the media and groups which would likely set up sharing networks.. Once the public were aware that their information can be accessed and start to doing so these organisations could not ignore their duty to act in what is supposed to be the public good. One way of assuring individuals of their rights and their means of access would be to pay donors and so set up a method of tracking which would include evidence of payments as an integral part of the infrastructure. Trust needs to be a two way partnership whereby the public and individuals have the means of monitoring that 'trust' Trust is no longer possible in the world of research according to the old understanding of the concept.. It needs to be a better more inclusive partnership with the public. That way we could see if it is possible to design a cleaner more trustworthy or at least less willing to breach trust research community. Kazumi Kubota No competing Interests: Yes The following competing Interests: Electronic Publication Date: Sunday, April 26, 2026 - 07:40 AI use: Yes I have used AI AI use details: Used AI to look up relevant articles by Thebmj but was blocked several times by Cloudflare. Therefore No AI material was used for response Highwire Comment Subject: UK Biobank leak: Health details of 500 000 people are offered for sale on Chinese website Workflow State: Released Full Title: Re: UK Biobank leak: Health details of 500 000 people are offered for sale on Chinese website Highwire Comment Response to: UK Biobank leak: Health details of 500 000 people are offered for sale on Chinese website Check this box if you would like your letter to appear anonymously:: Last Name: stevens First name and middle initial: susanne Email: jamonityum@outlook.com Address: HR3 5DZ Occupation: retired BMJ: Additional Article Info: Rapid response
Re: UK Biobank leak: Health details of 500 000 people are offered for sale on Chinese website
