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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

#131

Post by EatingWithForks »

cloverich wrote: post #96
freeone3000 wrote: post #33

Earlier quoted context omitted.

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…

> 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 sell to a private company.

I would start freaking the fuck out if my primary care physician gets to sell my diagnosis for money to Facebook, and I don't give a rat's ass if some 3 year old could've been cured of epilepsy if my doctor was able to do so. HIPPAA prevents my doctor from doing so and I'm glad for it.

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

#132

Post by dheera »

freeone3000 wrote: post #33
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…

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…

Yet they leak my medical records to debt collectors every single time, for debts that aren't even mine (when insurance refuses to pay for what they should).

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

#133

Post by JohnFen »

kkaske wrote: post #36
maxehmookau wrote: post #31

Earlier quoted context omitted.

> HIPAA is a massive burden on medical and research organizations of all sizes That is the point. It is supposed to be burdensome. It is supposed to be difficult and cumbersome to do anything with anybody's medical data. I don't want to dismiss your comment entirely, because I understand the frustration around the good that the data could do but in the wrong hands it could be truly disasterous. I do not want Meta or…

I know that you probably meant Google (the search engine), but Google (the company) is already in your medical data: https://cloud.google.com/healthcare

> Google (the company) is already in your medical data

This is one of the many things that lead me to consider Google to be a harmful and reprehensible company.

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

#134

Post by chopin »

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.

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

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

#135

Post by photochemsyn »

nmca wrote: post #129
photochemsyn wrote: post #38

People are saying that open access to everyone's medical records would speed up research, but that's not how well-controlled and well-designed medical research works in practice. For example, if you wanted to study lung cancer causes and treatment efficacy, just mining public data would not be that beneficial. Real studies need controls, detailed patient histories, actual observational lab work (blood tests, etc.), a…

This plainly isn't true, just to briefly articulate: * Hypothesis generation sped up * Candidate participant discovery sped up - including finding controls * large classes of analysis possible on just the data, including difference in difference and natural experiment

If the data is rigorously anonymized, then it loses all value for the health insurance / advertising sector, who want to exclude high-cost patients from coverage and target individuals with health conditions, respectively.

Do you think Big Tech shareholders (with additional holdings in pharmaceuticals, petrochemical, agribusiness etc.) would be interested in a database of rigorously anonymized patient data intended to discover relationships between things like pesticide exposure and Parkinson's disease, or unpleaseant side effects of currently profitable pharmaceutical products?

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

#136

Post by malfist »

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

Fire you if you've had an abortion?

Fire you if you've had gender affirmation surgery?

Refuse to hire you if you've been treated for addiction?

What if you're a public figure?

Press announces you've had cosmetic surgery.

Press announces you had an anal fissure treated.

Press tells everyone you have an STI, or your children have an STI

There are a lot of ways to weaponize medical information.

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

#137

Post by flangola7 »

krisoft wrote: post #92
scarby2 wrote: post #56

Earlier quoted context omitted.

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? Like throws you in prison because you were pregnant and now you are not, and the state concludes you must have had an abortion which just recently become illegal where you live?

Or ever received transgender care. Does this person ever read the news!?

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

#138

Post by EatingWithForks »

iandanforth wrote: post #37
freeone3000 wrote: post #33

Earlier quoted context omitted.

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…

[flagged]

Yeah I also wish it wasn't stigmatized for teenagers to go on birth control to control PCOS or whatever, but I sure as fuck am against some random state government putting together "research panels" or whatever of such people without their informed consent.

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

#139

Post by ianburrell »

hideo wrote: post #103
Nifty3929 wrote: post #84

Earlier quoted context omitted.

Limited Liability is a GREAT thing. It allows us to build businesses that serve society that we wouldn't otherwise. Would you start a company or invest in one if you could lose all your personal wealth? Few would.

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.

Most companies are limited liability. All companies that would bid on project would be limited liability. Why do you think this project is special enough that the owners should be liable?

Also, LLC in US is kind of company. It is mostly used for small sole proprietorships and partnerships. Technically, public companies are “limited by shares” where shareholders are liable up to value of their shares. But there is no difference in terms of protecting owners from liability so they are called limited liability.

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

#140

Post by genocidicbunny »

mdale wrote: post #105
genocidicbunny wrote: post #20

Earlier quoted context omitted.

Seriously, this question seems to indicate a critical lack of common sense in the poster. You don't even need to have a desire for privacy, just a modicum of risk aversion. Here's a simple example of what can happen with your medical data: Medical data ends up somewhere like LexisNexis -> Company looks you up before hiring -> Company sees that you have a health condition that will cost them more in health insurance c…

There are already real bias actualized on the name and gender of the applicant at the very first stage of company hiring. Late stage investigations credit reports, public court records, online social profiles can happen but rarely do. Companies focus on referrals and confirmed job history. I can't imagine more invasive investigations into health history. Secondly why are companies paying more for healthcare given a e…

> I can't imagine more invasive investigations into health history.

The point is they wouldn't be 'invasive'. Plug a name into a website, get a cost breakdown of how much health insurance would cost for that employee. Indeed will probably have that feature ready to go the day after it becomes legal/available. A few minutes of work for a relatively low-paid employee processing applications, or these days probably some sort of automated system doing the same.

> Secondly why are companies paying more for healthcare given a employee sickness.

They might not pay more for that single employee, but they will pay more overall. The insurance company, as much as it can, will look at how how much it's bringing in, and try to maximize that. So a company could find itself paying higher rates when they renew their health insurance contract.

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