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UK Biobank health data keeps ending up on GitHub

biobank.rocher.lc

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Re: UK Biobank health data keeps ending up on GitHub

#51

Post by john_strinlai »

fastaguy88 wrote: post #48
adwf wrote: post #16

That's the least of it: https://www.bbc.co.uk/news/articles/cpvxgl3n138o All 500,000 participants for sale on Alibaba... And official response: https://www.ukbiobank.ac.uk/news/a-message-to-our-participan...

BioBank claims (1) only de-identified data was available and (2) none of the data was actually sold before the datasets were taken down.

unfortunately for most people, de-identified data is typically a very short analysis away from being re-identified.

the field of de-anonymization is booming.

Re: UK Biobank health data keeps ending up on GitHub

#52

Post by harvey9 »

philipwhiuk wrote: post #43
anitil wrote: post #19

I've opted in to Australia's version of the biobank knowing that it's inevitable that it will be leaked some day, I think the data is so valuable in perpetuity that it's worth it. I remember Ben Goldacre has been working on how to make data more accessible in a safer way to (in part) avoid this very thing, but I haven't heard much of it since [0] [0] https://www.bennett.ox.ac.uk/blog/2025/02/opensafely-in-brie...

I have huge problems with Goldacre's project because that project has never been disclosed to the general public let alone some form of opt-in/opt-out.

I think the opt out process is the same as the one that came to prominence in the care.data days. It is not a very good process since it is opt out not opt in, and reliant on motivated people searching for a form.

On the other hand I like opensafely's approach to security: no individual data is ever shared with researchers.

Re: UK Biobank health data keeps ending up on GitHub

#54

Post by nxobject »

globular-toast wrote: post #29
siva7 wrote: post #27

Earlier quoted context omitted.

They clearly do include "some random student" as the data can be shared with others from the eligible research group which are almost always university students who have zero clue about itsec.

I worked in this field. It's not just the students. Hardly anyone seemed to understand how and why you would keep data out of a git repo.

I'm curious – in which context? I've worked on NIH-funded grants in academic medical centers, throughout the research lifecycle, and I've seen how both stringently data management plans are vetted, and how annual IRB certification drills the basics even into the oldest tech-phobic investigators.

That being said, I may be as pessmistic as you are: I don't think people right now grasp how standards for deidentification may no longer be enough, and how easy and automated deanonymization changes everything. Unfortunately, cuts to federal science agencies means that I doubt any well-informed guidance will come soon.

Re: UK Biobank health data keeps ending up on GitHub

#55

Post by nxobject »

adwf wrote: post #16

That's the least of it: https://www.bbc.co.uk/news/articles/cpvxgl3n138o All 500,000 participants for sale on Alibaba... And official response: https://www.ukbiobank.ac.uk/news/a-message-to-our-participan...

More details on leaked information from El Reg, especially after (laudably) the British government has been more transparent: https://www.theregister.com/2026/04/23/500k_biobank_voluntee...

"The charity did not specify the types of data that were included, but Murray stated in the Commons that several markers were included in the listings:

- Gender

- Age

- Month and year of birth

- Assessment center data

- Attendance dates

- Socioeconomic status

- Lifestyle habits

- Measures from biological samples related to haematology, biology, and chemistry

- Sleep, diet, work environment, mental health, and health outcomes data."

Re: UK Biobank health data keeps ending up on GitHub

#56

Post by nxobject »

john_strinlai wrote: post #51
fastaguy88 wrote: post #48

Earlier quoted context omitted.

BioBank claims (1) only de-identified data was available and (2) none of the data was actually sold before the datasets were taken down.

unfortunately for most people, de-identified data is typically a very short analysis away from being re-identified. the field of de-anonymization is booming.

Especially for a nation-state that's already hoovering up data broker products.

Re: UK Biobank health data keeps ending up on GitHub

#57

Post by LeifCarrotson »

petterroea wrote: post #39
michaelt wrote: post #2

> It has given 20,000 researchers around the world access under strict agreements that prohibit sharing data further. To me it seems rather naive to have done that. After all, you can't un-leak medical data. So even if the "strict agreement" included huge punishments, there's no getting the toothpaste back in the tube. If you want to ensure compliance before a leak happens you have to (ugh) audit their compliance. An…

One of the favorite lessons I learned is that anything at scale has to be designed for idiots. I am pretty sure every person reading this has had days where they have done absolutely stupid things without realizing. Now assume there are thousands of users, and you could be providing tools to the smartest people in the world and still have people do stupid stuff all the time. This doesn't just apply to UX. Then there'…

"Favorite" in what sense? "Most critical" is a very different meaning of the word, usually it implies pleasure/happiness.

Internalizing that people are frequently less intelligent and less respectful and less kind and less thoughtful than you previously believed is a tragic loss of innocence and hope, not a favorable experience.

Re: UK Biobank health data keeps ending up on GitHub

#58

Post by petterroea »

LeifCarrotson wrote: post #57
petterroea wrote: post #39

Earlier quoted context omitted.

One of the favorite lessons I learned is that anything at scale has to be designed for idiots. I am pretty sure every person reading this has had days where they have done absolutely stupid things without realizing. Now assume there are thousands of users, and you could be providing tools to the smartest people in the world and still have people do stupid stuff all the time. This doesn't just apply to UX. Then there'…

"Favorite" in what sense? "Most critical" is a very different meaning of the word, usually it implies pleasure/happiness. Internalizing that people are frequently less intelligent and less respectful and less kind and less thoughtful than you previously believed is a tragic loss of innocence and hope, not a favorable experience.

Favourite as in "realizing it was an interesting aha moment". Sure, it's a depressing loss of innocence. But on the other hand I always love learning things where I feel like I'm closer to knowing what I'm doing. Not that I think I'll ever get there, it's an ever lasting journey
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