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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

#141

Post by JohnFen »

Nifty3929 wrote: post #94

The effort we spend protecting medical records is out of all proportion to the damage done by any leaks. I really do not understand the reasoning. And this is effort that would otherwise be used to generate other economic benefits, like food, housing, medical treatments, etc. Another problem is that these laws (HIPAA, etc) actually CONTRIBUTE TO the leaks, because they provide a huge blackmail incentive to hackers. T…

> The effort we spend protecting medical records is out of all proportion to the damage done by any leaks.

I disagree entirely.

> really what's the worst outcome?

Well, let's look at what's happened in the past. You could be denied employment, denied housing, denied insurance coverage, even denied essential medical treatment, for starters.

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

#142

Post by sensanaty »

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…

Please give me your full address, all your passwords & associated emails & phone number please, I pinky swear I won't misuse these in any way and will only do research with this information about the security of people's houses & accounts!

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

#143

Post by JohnFen »

dudeinhawaii wrote: post #117

Big Tech, Small Tech, someone will eventually have access to our medical records and honestly it's the direction things need to go in order to have cheaper, more transparent healthcare as well as drive innovation in the space a large. It's less about "who" and more about "how". How will we grant this access in safe and (preferably) anonymous ways.

> It's less about "who" and more about "how".

It's both. "Who" is a very critical thing, because there are so many bad actors out there.

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

#144

Post by danaris »

genocidicbunny wrote: post #115
ryandrake wrote: post #108

Earlier quoted context omitted.

I mean, I’d be for this but I was trying to meet OP half way. CONSENT. That’s all that we are asking for.

> but I was trying to meet OP half way. I'm not. Getting pretty tired of having the meeting point of getting buttfucked and not buttfucked being buttfucked, but with lube.

"Meet me in the middle," says the unjust man.

You step forward.

He steps back.

"Meet me in the middle," says the unjust man.

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

#145

Post by tmcb »

Nifty3929 wrote: post #94

The effort we spend protecting medical records is out of all proportion to the damage done by any leaks. I really do not understand the reasoning. And this is effort that would otherwise be used to generate other economic benefits, like food, housing, medical treatments, etc. Another problem is that these laws (HIPAA, etc) actually CONTRIBUTE TO the leaks, because they provide a huge blackmail incentive to hackers. T…

The worst outcome is that individuals may have sensitive information in their medical history that could be poorly received by their social circles if it becomes public. In extreme cases, this could even lead to threats on their life.

Consider this: the same argument could be applied to our endeavor to safeguard the secrecy of voting. What is the worst outcome if everyone discovers who you voted for?

Such conclusions are inherently biased because we are unable to accurately evaluate the importance of these very existing protective measures in a civilized society.

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

#146

Post by glitchc »

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…

Privacy is a right, ability to conduct research is a privilege.

It's clear which takes priority over the other.

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

#147

Post by arp242 »

JohnFen wrote: post #128
arp242 wrote: post #88

Earlier quoted context omitted.

I don't mind aggregate data, or anonymized where I'm "Patient b15-2gty", which is what you seem to be talking about, but I do mind "here's all the data about patient Martin Tournoij, for everyone to read". I wouldn't want any future employers to see my medical data for example, as they may use this to discriminate (theoretically anyway; my medical history thus far is essentially non-existent). Also: in the late 90s m…

> I don't mind aggregate anonymized data where I'm "Patient b15-2gty If you're ""Patient b15-2gty", then the data isn't aggregate. Aggregated data means that there are no individual data points at all, only aggregated ones, so there is no need for any sort of individual identifiers. If there's any sort of individual identifier, then the data cannot be effective anonymized. If the data is aggregated, and the original…

Oops, an "or" got lost in editing; fixed it!

I don't agree about anonymization; "true" anonymity is probably impossible in most areas of life, even for simple things like a walk in the forest as there's always something a significantly advanced sleuth can use.[1] There are no "true" one-way hashes either – you can always brute-force). It's about it being too infeasible to actually do that.

[1]: https://arstechnica.com/science/2023/05/human-genomic-bycatc...

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

#148

Post by ianburrell »

chopin wrote: post #134
Nifty3929 wrote: post #123

Earlier quoted context omitted.

If their lability was not limited, the company would not have been started.

If the liability is so great that an LLC is necessary maybe it shouldn't be done in the first place.

The potential liability for any company is big enough that limited liability is necessary. No one would start company if they could lose all their assets not just ones invested in company.

Are people confused that limited liability limits the liability of the company? Because limited liability means that the liability of the owners is limited to their investment. The company can go bankrupt from losing lawsuit.

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

#149

Post by mannyv »

The problem with data masking is that you don't know what data is important.

Want to see if there's a geo cluster? Oh sorry, there's no location data. Do you want to see if something affects age band 12-14 instead of 16-18? Sorry, everyone in that group is in a HIPAA bucket. Do you want to see if there's a commonality among treatment options for obese women over 65 who are diabetic in rural communities? Nope, sorry.

Do you want to determine the success rates and outcomes for different treatments in different regions for a given condition, and if they differ bu age/gender/ethnicity/place of treatment? Nope.

If there are uses that are prohibited prohibit them. Thats what the law is for.

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

#150

Post by comte7092 »

scarby2 wrote: post #56
genocidicbunny wrote: post #24

Earlier quoted context omitted.

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…

>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.

“It doesn’t matter to me therefore it shouldn’t matter to anyone else. My experience is universal and correct.”

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