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greg_dc 5 minutes 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!
azan_ 38 minutes 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.
IChooseY0u 33 minutes ago [-]
I can't imagine paying for news.
speedgoose 12 minutes ago [-]
I pay for some good quality news and the quality and the lack of native advertising is worth it.
mentalgear 6 minutes ago [-]
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, ...).
alt227 19 minutes ago [-]
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.
clickety_clack 11 minutes ago [-]
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.
londons_explore 45 minutes 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 15 minutes 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 37 minutes ago [-]
I can't wait for this to be used for assassination by peanut.
basisword 28 minutes ago [-]
Which would be fine if that's what the people who gave their data over agreed to.
keybored 32 minutes ago [-]
“We didn’t make a decision based on that.” Done and dusted?
mentalgear 3 minutes 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.
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.
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.
Certainly not Billionaires buying newspapers (e.g. Washington Post/Bezos, ...).
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.
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.
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.
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.
https://nanoporetech.com/products/sequence/minion
...until they're inevitably sold.