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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

#151

Post by darrin »

Pulcinella wrote: post #26
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.

It would be interesting if all research and advances based on PHI were automatically public domain. Sort of like the GPL - any derivatives, treatment discoveries, etc. must also be open. There would probably be too many loopholes to cover effectively, but it's a thought.

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

#152

Post by Thrymr »

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…

If you really can't imagine a way that someone might weaponize detailed health information, you have no business suggesting how laws should be changed around the matter.

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

#153

Post by flangola7 »

Nifty3929 wrote: post #123
hideo wrote: post #103

Earlier quoted context omitted.

You're missing GPs point. GP is not arguing to remove the concept of LLCs. GP is arguing that the entity in charge of all your medical information should not be an LLC. LLCs in general are great. This company probably shouldn't be LLC.

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

Why not? As long as they don't do anything that causes harm then the company isn't in danger. If they think it's likely they would cause harm, well then obviously they shouldn't exist.

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

#154

Post by EatingWithForks »

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…

> Certainly, I would not want my records in the newspaper - but really what's the worst outcome? Everybody finds out just how much ED medication I take?

No. The worst outcome is the police arresting a random civilian because their medical record showed they were actually a fully transitioned person living as their identified gender (and thus the only way they would know is through trawling through medical records) and are therefore in violation of, say, a bathroom law. Or a law banning "crossdressing" or other shit.

It's teenagers and young women being sent to prison because there's a medical record where they were treated for excessive bleeding which lost a pregnancy, and are put in jail until their trial for abortion is up because they're too poor for bail.

It's buying up the medical data of jewish people to "prove" they're really harvesting the blood of Christian children.

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

#155

Post by boring_twenties »

genocidicbunny wrote: post #67
PragmaticPulp wrote: post #50

Earlier quoted context omitted.

You don’t think you benefit from medical research?

Oh sure, but you know, I also probably benefited a little bit from the Tuskegee Syphilis experiments, and heck, if nuclear war ever comes, the things learned from keeping Hisashi Ouchi alive after his radiation expose, will probably help too. Doesn't make them any less fucking wrong.

> Hisashi Ouchi

That was a punishing read

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

#156

Post by clusterhacks »

iandanforth wrote: post #104
tgv wrote: post #86

Earlier quoted context omitted.

> With easy and ready access to medical data we could be decades ahead of where we are today. That's just bullshit. Also, given the state of medical research methodology, you could just as well argue that it would yield even more unreliable studies, each adding confusion to our knowledge.

I get where you're coming from but the problems are orthogonal. Let's say that each research study spends 10% of its time on recruitment and another 5-10% of its time on compliance. (Real numbers can be much higher). Open medical data would reduce both these efforts, so every study, regardless of quality now goes more quickly and/or is less expensive. This is the primary benefit. Now you're pointing out that extremel…

For all intents and purposes, once IRB approval for a study is obtained, medical records ARE ALREADY OPEN to researchers for the purpose of recruitment.

I believe open medical data would have absolutely zero effect on the amount of time spent on recruitment.

Source: Me. I work with clinical trials data management in a medical research institution pulling hospital-side clinical data and patient schedules into systems on the research-side specifically for the purpose of recruitment.

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

#157

Post by fallingknife »

darrin wrote: post #151
Pulcinella wrote: post #26

Earlier quoted context omitted.

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.

It would be interesting if all research and advances based on PHI were automatically public domain. Sort of like the GPL - any derivatives, treatment discoveries, etc. must also be open. There would probably be too many loopholes to cover effectively, but it's a thought.

Then there would be no research and advances. Nothing is free.

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

#158

Post by flangola7 »

ianburrell wrote: post #148
chopin wrote: post #134

Earlier quoted context omitted.

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.

For certain things the individual owners shouldn't be shielded from liability. Medical privacy is one of those.

Otherwise you end up with people who can create as many harmful businesses as they want and just walk away when it explodes, ignoring everyone caught in the shrapnel. I'm 1000x more concerned about the effects of harmful companies than whatever friction it creates for starting new companies. Everything already moves too fast, it would be far preferable to have fewer corporations if it meant they were of higher ethical behavior.

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

#159

Post by cloverich »

EatingWithForks wrote: post #131
cloverich wrote: post #96

Earlier quoted context omitted.

> Very many things doctors need to be aware of to diagnose conditions have significant social stigma... the risk is too great for any individual Very many things doctors need to be aware of, because the patients life depends on it, are left out when patients move between specialists and physicians, which happens all of the time. Outbreaks of viral and bacterial illnesses result in thousands of people independently ch…

HIPPAA doesn't just cover, say, the spread of tuberculosis. It also bars things like collecting a panel of homosexuals, transgenders, women who are on birth control or have abortions, people seeking treatment for schizophrenia or a personality disorder or addiction, or just fat poor smucks that don't adequately treat their diabetes. Any number of highly stigmatized things or things that Palantir would love to own to…

What I'm saying is, the protections it provides are overstated, and the damage it does is (greatly) understated. I am not saying lets discard privacy protections all together. I am saying lets not let bad implementations of good intentions convince us to be ok with an extremely expensive system that is not very useful and results in a great deal of physical and economic harm.

> I would start freaking the fuck out if my primary care physician gets to sell my diagnosis for money to Facebook,

To play Devil's advocate, do you think Facebook doesn't know who is gay and who has diabetes? If Target can figure out when you're pregnant, Google can certainly figure out on which day you plan to go the abortion clinic. This information is already out there and used in ways we don't like. So maybe we should consider re-working HIPPA so the information can be used by the good guys instead.

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

#160

Post by EatingWithForks »

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…

> How does someone weaponize your information?

This is so easy to recognize that I have to wonder if you've ever met a less-privileged person than yourself.

1. A fully functioning, treatment-compliant schizophrenic is now at risk of being passed up for jobs or promotions because their medical history is up to be bought by employers.

2. A local concerned citizen will be much more afraid of protesting or publicly being against a politician if the politician can buy their history of getting PreP, an HIV preventative drug that is popular in the homosexual community.

3. A religious private school starts to buy the medical history of their young girls, and reveal which girls are taking birth control, had had an abortion, etc. by expulsing them from the school.

Or simply put: You first. Put up your hemorrhoid surgery photos up on your LinkedIn.

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