UK Biobank leak: Health details of 500k people offered for sale on Alibaba

183

ddberhane about 4 hours ago 69 commentsRead Article on bmj.com

DE version is available. Content is displayed in original English for accuracy.

⚡ Community Insights

Discussion Sentiment

63% Positive

Analyzed from 827 words in the discussion.

Discussion (69 Comments)Read Original on HackerNews

mellosouls•about 2 hours ago

Already being discussed:

UK Biobank health data keeps ending up on GitHub

https://news.ycombinator.com/item?id=47875843

UK Biobank health data listed for sale in China, government confirms

https://news.ycombinator.com/item?id=47874732

cs02rm0•about 1 hour ago

One thing that struck me was, when you look through the board and the committees, it's full of scientists, finance people, doctors, academics. There's maybe a couple of technologists - ML, IT delivery.

If they've got anyone with a background in cyber security I can't see it.

https://www.ukbiobank.ac.uk/about-us/people-and-governance/

And then the CEO comes out with:

> We have never seen any evidence of any UK Biobank participant being re-identified by others.

This data contains sex, at least month and year of birth. I can't see any sensible security-oriented technical person coming out with a line like that.

greg_dc•about 2 hours ago

In fairness, is this any worse than what Palantir will do with the whole countries NHS records? And they're being paid by the government to do it!

estearum•about 2 hours ago

Is allowing random malicious actors to buy health data worse than allowing NHS's own employees to interact with that data productively?

yes

rafram•about 2 hours ago

Palantir develops database software.

jjice•about 2 hours ago

Both are bad

azan_•about 3 hours ago

"Access this article for 1 day for: £50 / $60/ €56 (excludes VAT)" Man, the scientific publishing cartel is something else. Note that author will generally get exactly £0 / $0 / €0 for his text.

WalterGR•about 4 hours ago

Related: https://news.ycombinator.com/item?id=47875843 “UK Biobank health data keeps ending up on GitHub”

blitzar•about 2 hours ago

Extremely related - my red string on the wall points to this being the source of the data leak rather the latest heist by Oceans Crew.

Given the whack-a-mole takedowns, its pretty clear everyone involved knew what was going on.

londons_explore•about 3 hours ago

There isn't much difference between giving this data to 20,000 researchers all over the world and simply publishing the data on the web.

I personally would like data like this to simply be published, together with a law that says using the data to make personalized decisions affecting those individuals is punishable with life in prison.

Basically, this data is 'opensource', but not for use to decide insurance premiums, job offers, or the contents of news articles.

spacebanana7•about 3 hours ago

> together with a law that says using the data to make personalized decisions affecting those individuals is punishable with life in prison.

This works well in theory but is basically unenforceable. It's barely possible, if possible at all, to audit how FB or google make ad targeting decisions - but once stuff gets into the fragmented ecosystem of data brokers and market intelligence consultancies all hope is lost.

To say nothing of state actors, like countries who might deny you a visa based on adverse medical info or otherwise use your information against you.

Pay08•about 3 hours ago

I can't wait for this to be used for assassination by peanut.

estearum•about 2 hours ago

well you just articulated the difference

licensing it to researchers allows you to create, monitor, and enforce policies like the one you describe

stealing it does not

basisword•about 3 hours ago

Which would be fine if that's what the people who gave their data over agreed to.

keybored•about 3 hours ago

“We didn’t make a decision based on that.” Done and dusted?

thom•about 1 hour ago

Would this have been prevented by the Trusted Research Environment stuff Ben Goldacre always used to talk about?

mchusma•about 1 hour ago

I honestly think health data should be public by default to any health researcher. We should do whatever we can to solve disease and live forever. Privacy be damned, I want life.

noname120•about 2 hours ago

How can the fulltext be accessed?

jonathanstrange•about 1 hour ago

In the same way as the "UK Biobank" software accesses it.

mentalgear•about 2 hours ago

> Data for sale included people’s gender, age, month and year of birth, socioeconomic status, lifestyle habits, mental health, self-reported medical history, cognitive function, and physical measures.

If this is not traceable back to individuals, it would probably good to be made public. But I assume the UK Biobank only gives access to trusted partners since - as we know in our 'data analytics' day and age - with enough general data quantity you can trace back anything to anyone if you have the resources. And the capitalist-surveillance econonmy certainly provides the profit-motive.

fragmede•about 3 hours ago

I want to get my DNA digitized so I can do all sorts of health stuff for myself, but finding a place that won't leak my data is troublesome. 23andme is right out.

grey-area•about 3 hours ago

Buy a desktop sequencer?

https://nanoporetech.com/products/sequence/minion

fenaer•about 3 hours ago

I have the same sentiment as OP, but for me the main benefit of a company doing it is the analysis that comes with it.

odyssey7•about 2 hours ago

If we are censoring our daily activities and major life decisions like healthcare due to the data economy, then it is making us less free. But who knows how many generations will pass before a solution shows up. We would need representatives who act collectively towards motives beyond profits.

ogundipeore•about 3 hours ago

Great suggestion. Thank you for sharing!

GistNoesis•about 3 hours ago

Similar to https://xcancel.com/SethSHowes ~10k budget based on minION sequencer. (Edit : his dedicated project page https://iwantosequencemygenomeathome.com/ )

But once your data has been digitized even if it is under your control the likelihood that it gets leaked is still high. Specially now with AI agents running everywhere, or people just asking AI services for medical advice.

Today the choice for advice is between low quality local AI advice or higher quality advice but lose your data control, the rational choice is probably losing your data control even if if will almost certainly comes back to bite you.

conception•about 3 hours ago

https://sequencing.com/our-difference/privacy-forever seems the best choice these days.

sheiyei•about 3 hours ago

I can believe the company does their best to keep the records private.

...until they're inevitably sold.

scotty79•about 3 hours ago

That kind of data should be public anyways.

alt227•about 3 hours ago

Yeah, as long as all 500,000 people in the data set agreed for it to be public then thats fine. But how do we verify that?

Ylpertnodi•about 2 hours ago

They're on the list, their information is out there. Isn't that what 'opt in' means?

PunchTornado•about 2 hours ago

When i signed up as a volunteer they assured me it was not going to be public, only veted researchers allowed to access it.

Aboutplants•about 3 hours ago

Gonna wager the US government is the first to purchase

cbg0•about 2 hours ago

The US has over 70 million on Medicare, why would they care about 500K brits?

gib444•about 3 hours ago

I thought we pay them to have it via Palantir contracts or something?

blitzar•about 2 hours ago

I think it is google that we pay to backdoor the data