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Do no harm petition: Don't give big tech access to our medical records

act.wemove.eu

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Re: Do no harm petition: Don't give big tech access to our medical records

#21

Post by judge2020 »

dmbche wrote: post #11
TZubiri wrote: post #5

Who gives a shit if Google has your medical records?

"google" is made of many individuals. If "google" has your records, you don't know who has access to them - they effectively become "public knowledge" in a way. You can imagine how your medical record could be used against you, I'm sure? For people that have suffered agressions, addiction, mental issues, these are all private but can be used against an individual in the public sphere.

I trust Google's internal user data access controls infinitely more than I do a random hospital's.

Re: Do no harm petition: Don't give big tech access to our medical records

#22

Post by boring_twenties »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

> upside is just so much larger than the harms

Or more importantly, the harms are to me, and the upsides are to you, so who cares?

Re: Do no harm petition: Don't give big tech access to our medical records

#23

Post by dhimes »

bpodgursky wrote: post #4

I 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…

My wife's vision is to have the patients control their medical data, and opt-in share it with the researchers who recruit them for studies. I don't know what the answer is, but I think it's going to change. You are correct in that it is a huge driver of costs.

Re: Do no harm petition: Don't give big tech access to our medical records

#24

Post by genocidicbunny »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Give me a surefire, 100% guarantee that my data won't be misused against me or anyone else, under severe penalty to you personally if your guarantee fails. Then we can talk.

Re: Do no harm petition: Don't give big tech access to our medical records

#26

Post by Pulcinella »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Absolutely not. Healthcare is already oppressively expensive in the US and now you want companies to be able to commercialize and exploit my private health information for profit? And they don’t even have to pay for it so they can sell me the cure they developed using information from my private health information?

America needs to be a radically different place for me to be okay with what you want.

Re: Do no harm petition: Don't give big tech access to our medical records

#27

Post by yummypaint »

bpodgursky wrote: post #4

I 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…

Medical research doesn't move slowly because medical records are private. Doing actual science takes alot of time, money, and effort. This is a foreign concept in the software world, where tons of engineering happens, but almost no science. Trying to growth hack one's way to medical treatments without proper testing is how people get killed.

There is ample evidence for what happens when companies in the health space are allowed to make their own rules, and it isn't better health outcomes. See thalidomide

Re: Do no harm petition: Don't give big tech access to our medical records

#29

Post by forkerenok »

The article doesn't mention whether those are anonymised records. A PDF from the references expands on that:

> Pseudonymisation and anonymisation are not enough: health data is so specific that re-identification can be trivial. Often a person’s social media or financial history, both widely available on today’s data markets, is sufficient to identify medical events that can easily lead to reidentifying supposedly pseudonymised or even anonymised datasets.

I agree with the sibling comment that we need more open data if (iff?) we want to increase the pace of medical research. But it seems to be a tough cookie to crack.

Re: Do no harm petition: Don't give big tech access to our medical records

#30

Post by boring_twenties »

bpodgursky wrote: post #4

I 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…

How much slower does medical research move than it would if experiments on live human beings were permitted?
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