(this post was largely replaced in April 2025)

The angry Biobank response (cached) to 2024’s investigative journalism into where biobank sent data basically boils down to three words on their decision making: “it wasn’t me”.  They have now done the same with new reporting in 2025 (denial, cache). Denying only the “claims in The Guardian” and not disclosing anything else is a Trump trick.

Now we know what Biobank can’t deny: UK Biobank’s lax processes handed biobank data to racists, hostile states, insurers, and who knows whom else.

Then the Chief Scientist of Biobank says they have “one of the best systems”  sending data to applicants in “weeks and days” and the NHS should release data just like biobank. The Biobank who didn’t spot an applicant was a bunch of eugenicists operating out of the same fake office as QAnon websites and other scams.

If you’re in the UK Biobank

If you are in UK Biobank, given the past actions of some of the recipients you may want to consider the effect of Biobank’s choices on you. Resources to support you should appear prominently on the front of the biobank website. If you are biologically related to someone in UK Biobank, it will also affect you.

If you are in UK Biobank, their privacy policy tells you that you can withdraw with “no further use”. UK Biobank (indefensibly) hides the form behind their helpline, requiring you to share your biobank ID or date of birth and the last postcode they have for you in order to get the form (if you do get it, send us a copy and we’ll publish it for everyone who follows you). You can either email back to them (if you want them to try and dissuade you) or post back to avoid emotional bullying by an organisation whose institutional failings handed your DNA to those they promised they wouldn’t. 

What data was involved

UK Biobank has not yet been clear, but if you are in the UK Biobank, you should assume your DNA sequence is at risk of being shared in breach of promises, along with your medical history.

If you’re in Wales or Scotland, that medical history includes your GP data. If you’re in England, your GP data was probably included if your GP used TPP in 2016 – Biobank had been given GP data by TPP, illegally, without the knowledge of the vast majority of GPs – until the BMA found out in ~2017 and data flows stopped; but biobank kept selling access to what they already had.

A small number of EMIS and TPP practices had believed Biobank’s (false) promises and given permission to share data, but 95+% of practices were waiting until the BMA’s scrutiny of UK Biobank’s practices had completed (scrutiny Biobank refused to assist with and vociferously objected to, in the same manner an alcoholic objects to sobering up).

There has been vocal advocacy from the outgoing Biobank leadership (and their friends) in the last year that data should be decided only by interests like the shared culture of HDRUK and Biobank –  political posturing divorced from what is now evident reality. What the new government chooses to do should now be more widely informed.

We’ll update this post as more resources become available.