"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.
I guess you can't imagine a free, open democratic state with rule of law either. Because when broad, independent, quality journalism with a wide audience is gone, all you'll have to worry about is that poor cat in a tree in Ottawa.
Unfortunately that is almost never enough. If your competition is populist media financed by state-level/billionaire agendas, it is impossible to compete in the long term. We would need a complete and general ban on political financing across all media to sustain such a market.
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.
> 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.
> 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.
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.
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.
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!
Palantir develops database software.
Both are bad
"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.
I can't imagine paying for news.
I guess you can't imagine a free, open democratic state with rule of law either. Because when broad, independent, quality journalism with a wide audience is gone, all you'll have to worry about is that poor cat in a tree in Ottawa.
I pay for some good quality news and the quality and the lack of native advertising is worth it.
Unfortunately that is almost never enough. If your competition is populist media financed by state-level/billionaire agendas, it is impossible to compete in the long term. We would need a complete and general ban on political financing across all media to sustain such a market.
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, ...).
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.
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.
> 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.
I can't wait for this to be used for assassination by peanut.
Which would be fine if that's what the people who gave their data over agreed to.
“We didn’t make a decision based on that.” Done and dusted?
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
Related: 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.
> 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.
Buy a desktop sequencer?
https://nanoporetech.com/products/sequence/minion
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.
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.
Great suggestion. Thank you for sharing!
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.
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.
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?
They're on the list, their information is out there. Isn't that what 'opt in' means?
When i signed up as a volunteer they assured me it was not going to be public, only veted researchers allowed to access it.
Gonna wager the US government is the first to purchase
The US has over 70 million on Medicare, why would they care about 500K brits?
I thought we pay them to have it via Palantir contracts or something?
I think it is google that we pay to backdoor the data