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We need to be very careful about medical big data and the privacy/ethics implications, but the benefits of this kind of medical research seem so compelling and

We need to be very careful about medical big data and the privacy/ethics implications, but the benefits of this kind of medical research seem so compelling and the risks seem so nebulous.

make3 4y ago
insurance companies are super powerful in the US, and some states are pro-business to some insane level. things such as this and businesses similar to 23andme really scare me. you need just one state to make it legal / one fucked CEO, and insurance company have your insurance data & your health data. Maybe there's a data leak & they use it without telling people, who knows.
- astrange 4y ago
  Insurance companies being regulated per-state in the US doesn't mean "you only need one state to defect", it means that defection would only apply to people living in that state. And insurance companies obviously already have your health data. You might remember before the ACA they'd drop people based on it and now they don't because they're not allowed to do that.
- hilbert42 4y ago
  "Maybe there's a data leak & they use it without telling people,..." Yes. ...And it'll take major data leaks of medical records put online by hackers before government takes note and fixe# it. You can bet the moment some very prominent politician's medical records are put online for all the world to see the details of his piles operation and the fact that he's being treated for gonorrhea that legislation will then follow.
twelfthnight 4y ago
I'm working at a health care startup whose business model is to work closely with at risk folks and help them avoid (expensive) emergency room visits. Since we don't have a lot of our own data, we need access to models pretrained on millions of patients to help us automate processes like discovering people with illnesses they haven't received treatment for yet. Unfortunately, these models are always licensed. So anyone with money can get them, but not smaller entities like small companies and hospitals. I think there must be a way to make this sort of anonymous data/model weights public and available to businesses in addition to research (researches can sometimes get data, but often are restricted from releasing models). Kind of like how MIT licenses wind up usually more beneficial to society than GPL. There is some risk to privacy, but I think the "risk of privacy" is used more as a way to justify charging money for data rather than a true concern over privacy/ public safety.

We need to be very careful about medical big data and the privacy/ethics implications, but the benefits of this kind of medical research seem so compelling and the risks seem so nebulous.

make3 4y ago

insurance companies are super powerful in the US, and some states are pro-business to some insane level. things such as this and businesses similar to 23andme really scare me. you need just one state to make it legal / one fucked CEO, and insurance company have your insurance data & your health data. Maybe there's a data leak & they use it without telling people, who knows.

astrange 4y ago
Insurance companies being regulated per-state in the US doesn't mean "you only need one state to defect", it means that defection would only apply to people living in that state. And insurance companies obviously already have your health data. You might remember before the ACA they'd drop people based on it and now they don't because they're not allowed to do that.
hilbert42 4y ago
"Maybe there's a data leak & they use it without telling people,..." Yes. ...And it'll take major data leaks of medical records put online by hackers before government takes note and fixe# it. You can bet the moment some very prominent politician's medical records are put online for all the world to see the details of his piles operation and the fact that he's being treated for gonorrhea that legislation will then follow.

twelfthnight 4y ago

I'm working at a health care startup whose business model is to work closely with at risk folks and help them avoid (expensive) emergency room visits. Since we don't have a lot of our own data, we need access to models pretrained on millions of patients to help us automate processes like discovering people with illnesses they haven't received treatment for yet. Unfortunately, these models are always licensed. So anyone with money can get them, but not smaller entities like small companies and hospitals. I think there must be a way to make this sort of anonymous data/model weights public and available to businesses in addition to research (researches can sometimes get data, but often are restricted from releasing models). Kind of like how MIT licenses wind up usually more beneficial to society than GPL. There is some risk to privacy, but I think the "risk of privacy" is used more as a way to justify charging money for data rather than a true concern over privacy/ public safety.