Gonna wager the US government is the first to purchase
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UK Biobank leak: Health details of 500k people offered for sale on Alibaba
11–20 of 94 posts
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#12I 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.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#13"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.
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Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#14I 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.
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.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#15There 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…
“We didn’t make a decision based on that.” Done and dusted?
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#16Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#17I 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.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#18There 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…
Which would be fine if that's what the people who gave their data over agreed to.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#19That kind of data should be public anyways.
Re: UK Biobank leak: Health details of 500k people offered for sale on Alibaba
#20"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.
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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.