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

WalterGR

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

fragmede

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.

londons_explore

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.

Aboutplants

Gonna wager the US government is the first to purchase

azan_

"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.

scotty79

That kind of data should be public anyways.

greg_dc

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!

mentalgear

> 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.

mellosouls

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

noname120

How can the fulltext be accessed?

thom

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

mchusma

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.

cs02rm0

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.

Canada

The general public tried over and over and over to reject the collection of such data in the first place. At every opportunity they rejected it. But the people who wanted the data just took it anyway, and when the predictable and predicted bad thing happens, nobody will be punished for it.

mixxit

Just tell me how I check my name