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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

#181

Post by TheCaptain4815 »

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…

I've always thought this about HIPPA as well, having worked in the healthcare field years ago. I imagine some "hero" leaking an enormous healthcare dataset after anonymizing some info and furthering research. Too bad I never had access to that.

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

#182

Post by JohnFen »

dheera wrote: post #132
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…

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).

I hear you, but those debts are actually yours. When you get treatment, you're assuming responsibility for the bill. The insurance company is technically reimbursing you, not assuming your debt.

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

#183

Post by JohnFen »

scarby2 wrote: post #63
iandanforth wrote: post #37

Earlier quoted context omitted.

[flagged]

the amount of people who think that social stigma cant be changed is beyond me. This is one of those cases where when we open things up we realize that just about everyone has or does things that are stigmatized and we have no choice but to stop stigmatizing them, the secrecy and shame are self-reinforcing.

> we realize that just about everyone has or does things that are stigmatized and we have no choice but to stop stigmatizing them

Yeah, it almost never actually works out that way, though.

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

#184

Post by JohnFen »

rocket_surgeron wrote: post #109
iandanforth wrote: post #37

Earlier quoted context omitted.

[flagged]

You are probably like me. To me there is no medical information of any kind that could embarrass or "stigmatize" me or anyone else. But the vast majority of people are paralyzed by fear that someone might find out they have hemorrhoids. Others live in a delusional state of paranoia where "duh gubmint" will use the info against them not realizing that any entity, governmental or otherwise, willing to do so will just i…

> To me there is no medical information of any kind that could embarrass or "stigmatize" me or anyone else.

The problem isn't being embarrassed. The problem is suffering real world consequences for certain types of medical treatment, such as problems getting work, renting housing, etc.

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

#185

Post by [deleted] »

cloverich wrote: post #159
EatingWithForks wrote: post #131

Earlier quoted context omitted.

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…

[deleted]

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

#186

Post by JohnFen »

CaptainZapp wrote: post #175
ryandrake wrote: post #78

Earlier quoted context omitted.

I'd be OK with a system that gave researchers access to my medical history only if they obtained actual, informed, and un-coerced consent . No "In order to use this medical service you must consent...", no "Please click Agree on this 38-page terms of service (which also sneakily agrees to consent)". No "I provide consent to each and every so-called researcher who wants access to my health history." An actual written…

Whenever I used medical services in the past and filled a form with a question if my data "could be used for research in anonymous form" I answered: Yeah, sure! Thanks to the likes of Facebook, Google and their ilk starting to stick their filthy paws into the most private medical data some years ago my answer now is always a resounding HELL, NO! I always feel bad about it, because it really shouldn't be that way, but…

> Thanks to the likes of Facebook, Google and their ilk starting to stick their filthy paws into the most private medical data some years ago my answer now is always a resounding HELL, NO!

I made the exact same change in my behavior as well. I already felt that I was making a sacrifice by exposing my data to the likes of drug companies and such. Exposing my data to the likes of a FAANG-style company is simply a nonstarter.

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

#187

Post by nradov »

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…

That is totally wrong. There is nothing in HIPAA which would prevent healthcare providers from reporting infectious disease outbreaks to public health agencies. In fact, under some circumstances they are actually required to report.

https://www.cdc.gov/nndss/about/index.html

And it's not "HIPPA". For some reason, people who are deeply ignorant about what the law actually does also seem to get the acronym wrong.

https://www.hhs.gov/hipaa/index.html

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

#188

Post by JohnFen »

TheCaptain4815 wrote: post #181
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…

I've always thought this about HIPPA as well, having worked in the healthcare field years ago. I imagine some "hero" leaking an enormous healthcare dataset after anonymizing some info and furthering research. Too bad I never had access to that.

> I imagine some "hero" leaking an enormous healthcare dataset after anonymizing some info and furthering research.

You misspelled "villain" there. If that were to happen, I'd 100% be calling for them to spend as much time in prison as possible.

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

#189

Post by JohnFen »

iandanforth wrote: post #61
dmbche wrote: post #18

Earlier quoted context omitted.

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

I reject the framing. It's about responsibility vs selfishness and fear. Medical information is a byproduct of something you do anyway that can save lives . It is our responsibility to make it available. If you want to opt out, fine, but basic decency demands that as a society we get over our collective hangups and make this information available.

> demands that as a society we get over our collective hangups

What you're calling "collective hangups" are, in fact, real and serious risks. I am distressed at how many people have forgotten (or perhaps were never aware) of the real abuse and harm that was happening with the sharing of medical data before legal protections were enacted. Heck, those harms still happen now, but to a reduced degree.

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

#190

Post by denton-scratch »

mo_42 wrote: post #12
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.

> Managed by "gematik GmbH", a company with limited liability. Because why should the entity responsible for all medical records have some liability. I think it doesn't really matter in what form the government appears. It's still the government and so its rules apply.

> I think it doesn't really matter in what form the government appears. It's still the government and so its rules apply.

If it's a "limited company", that means it's liability is limited to shareholder capital. It's going to have to have an awful lot of capital if it's going to be able to compensate the entire population for mishandling their data.

Also, if it's a limited company, then the shareholders can sell their shares; the company can change hands, often to owners in a different jurisdiction.

A limited company is not an arm of the government, and I can't hold a limited company accountable in the same way I can the government; especially if my personal data has left the jurisdiction.

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