That kind of data should be public anyways.
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?
UK Biobank leak: Health details of 500k people offered for sale on Alibaba
21–30 of 94 posts
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#22There 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 premium…
> 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.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#23"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.
[flagged]
I pay for some good quality news and the quality and the lack of native advertising is worth it.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#24Earlier quoted context omitted.
[flagged]
Then how should the journalists that write about it get paid? I for one would rather pay for news than have to watch ad content for it instead.
It’s not so much about having to watch ads, it’s the incentive alignment towards what’s good for advertisers over what’s good for readers.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#25I 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.
https://sequencing.com/our-difference/privacy-forever seems the best choice these days.
I can believe the company does their best to keep the records private.
...until they're inevitably sold.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#26Gonna wager the US government is the first to purchase
The US has over 70 million on Medicare, why would they care about 500K brits?
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#27"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.
[flagged]
I paid for TheGuardian because if we don't support truly independent, objective, investigative journalism, who will?
Certainly not Billionaires buying newspapers (e.g. Washington Post/Bezos, ...).
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#28In 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!
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#29> 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.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#30Related: https://news.ycombinator.com/item?id=47875843 “UK Biobank health data keeps ending up on GitHub”
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.