Do no harm petition: Don't give big tech access to our medical records
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Re: Do no harm petition: Don't give big tech access to our medical records
#2In Germany they decided to make the EPA (electronic medical record) opt-out starting by 2024. Managed by "gematik GmbH", a company with limited liability. Because why should the entity responsible for all medical records have some liability. It is a joke, a bad one.
They don't even say how to opt-out.
Re: Do no harm petition: Don't give big tech access to our medical records
#3Looks like this is for Europe. I think US needs one too.
Re: Do no harm petition: Don't give big tech access to our medical records
#4I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen.
These laws, while well-intentioned, kill people.
If you think that's an OK tradeoff, I guess you're free to accept that. But there is very real blood on your hands, the fact that none but the most egregiously common diseases are studied. It doesn't have to be this way.
Re: Do no harm petition: Don't give big tech access to our medical records
#5Who gives a shit if Google has your medical records?
Re: Do no harm petition: Don't give big tech access to our medical records
#6I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen. These laws, while well-intentioned, kill people. If you think th…
> These laws, while well-intentioned, kill people.
So does medical fraud, and it's not well-intentioned at all.
Just sayin'.
I have almost no faith at all in the types of folks that found and run tech companies, these days.
They have proven, over, and over, and over again, that They. Just. Can't. Be. Trusted.
If the tech industry were to create an ethics board, with real enforcement teeth (like the Bar Associations, or Medical Boards), then that could be a start.
The problem is, as soon as anyone even mentions the possibility of restricting tech companies, they are taken out behind the woodshed.
Re: Do no harm petition: Don't give big tech access to our medical records
#7I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen. These laws, while well-intentioned, kill people. If you think th…
It sounds like inane knee jerk reaction from the usual zealots
Re: Do no harm petition: Don't give big tech access to our medical records
#8I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen. These laws, while well-intentioned, kill people. If you think th…
> These laws, while well-intentioned, kill people. So does medical fraud, and it's not well-intentioned at all. Just sayin'. I have almost no faith at all in the types of folks that found and run tech companies, these days. They have proven, over, and over, and over again, that They. Just. Can't. Be. Trusted. If the tech industry were to create an ethics board, with real enforcement teeth (like the Bar Associations,…
So do guns
Re: Do no harm petition: Don't give big tech access to our medical records
#9We need a nuanced approach.
Blanket bans, while sounding good, can slow down pace of innovation in an area that desperately needs more of it - esp as the world is aging.
This needs to be a combination of informed consent, clear access auditing and usage, and laws to heavily penalize misuse of this data.
Re: Do no harm petition: Don't give big tech access to our medical records
#10Who gives a shit if Google has your medical records?
Anyone with a desire for privacy who possesses critical reasoning.