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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

#51

Post by bdavbdav »

forkerenok wrote: post #29

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 pse…

Have a look into differential privacy - theres a lot more to it than just stripping names.

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

#52

Post by vinceguidry »

boring_twenties wrote: post #22
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?

You've just described social policy. Everything anyone does hurts someone's interest.

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

#53

Post by w0m »

I honestly think the the taboo-nature of medical records kills people in significant numbers.

More-so than anything else, the focus should be on preventing pre-existing conditions from being able to affect individuals negatively than adding hoops for the individual to access their own gated personal records (Moving between hospital systems today can be an absolute nightmare in the states).

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

#54

Post by ClumsyPilot »

dmbche wrote: post #18
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…

What are your thought on privacy then? Shouldn't my records be my own business?

no your records are their business

Thier corporate records are none of your business

if we are gonna have no privacy, it should go both ways - companies lose privacy too

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

#56

Post by scarby2 »

genocidicbunny wrote: post #24
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.

i cant give you that guarantee today. I can't guarantee the government or your healthcare provider isn't misusing your data.

In fact a surefire guarantee essentially doesn't exist. But what exactly are you afraid of? How does someone weaponize your information? Everyone in my life already knows about my health conditions, i speak openly about them in my personal life, my business life and online there have been zero consequences to this.

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

#57

Post by cm2012 »

w0m wrote: post #53

I honestly think the the taboo-nature of medical records kills people in significant numbers. More-so than anything else, the focus should be on preventing pre-existing conditions from being able to affect individuals negatively than adding hoops for the individual to access their own gated personal records (Moving between hospital systems today can be an absolute nightmare in the states).

100%. HIPPA is the reason doctors offices still use fax machines and refuse to update patients with emails.

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

#58

Post by annoyingnoob »

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…

> 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 be decades ahead of where we are today.

You are saying that you'd like to take my personal data and make money from it without compensating me. My records are mine and they are private and it should stay this way.

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

#59

Post by boring_twenties »

PragmaticPulp wrote: post #50
boring_twenties wrote: post #22

Earlier quoted context omitted.

> 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?

You don’t think you benefit from medical research?

In the nightmare scenario proposed by GP, of everyone's medical records being open to the public, I would simply stop consuming all medical services. So no.

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

#60

Post by ClumsyPilot »

NavinF wrote: post #49
xaedes wrote: post #2

In 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.

> GmbH This is apparently the German equivalent to an LLC. Pretty sure you misunderstood what "limited liability" means. Pretty much all organizations today have the same legal status: https://en.m.wikipedia.org/wiki/Limited_liability

> Pretty much all organizations today have the same legal status

Thats exactly the issue

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