- 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!
- 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.
by londons_explore
7 subcomments
- 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.
- Would this have been prevented by the Trusted Research Environment stuff Ben Goldacre always used to talk about?
by mellosouls
0 subcomment
- 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
- "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.
- Related: https://news.ycombinator.com/item?id=47875843 “UK Biobank health data keeps ending up on GitHub”
by noname120
1 subcomments
- How can the fulltext be accessed?
by mentalgear
0 subcomment
- > 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.
- That kind of data should be public anyways.
by Aboutplants
3 subcomments
- Gonna wager the US government is the first to purchase
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