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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

#191

Post by JohnFen »

hedora wrote: post #102
iandanforth wrote: post #61

Earlier quoted context omitted.

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.

Blaming individuals for not trusting medical and tech companies that have repeatedly abused private information is a strange take. Instead of taking the information by force (which health care conditioned on opt in certainly is), we should figure out how to build a trustworthy medical research and care industry. For instance: They could only make this information available to universities, and ensure the results of t…

> If google wants to store medical data, then they have to spin off their ad business.

I don't think I'd find that sufficient.

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

#192

Post by inkcapmushroom »

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…

>but really what's the worst outcome?

American history includes a period in the not-too-distant past where we put all people of a specific ethnicity in internment camps. So I'm gonna go with using genetic data towards those purposes probably. Maybe I could come up with even worse.

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

#193

Post by JohnFen »

screye wrote: post #166
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…

The alarm around possible exploitation due to public medical data far exceeds the ground reality. At the same time, it has stifled progress in the field leading to more deaths than we should have to tolerate. Big Tech is not a thing, just like big-sensors was not a thing. Electric sensing became a thing in the 1900s, and the medical community benefitted from the machines built because of them. Tech is similarly a too…

"Big Tech" is referring to specific companies that are demonstrably abusive as part of their business model. It's not just some imaginary threat.

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

#194

Post by denton-scratch »

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.

> The potential liability for any company is big enough that limited liability is necessary.

No, that's what insurance is for.

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

#195

Post by denton-scratch »

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…

> but really what's the worst outcome? Everybody finds out just how much ED medication I take?

Your employer finds out that you are alcoholic?

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

#196

Post by JohnFen »

Nifty3929 wrote: post #84
ClumsyPilot wrote: post #60

Earlier quoted context omitted.

> Pretty much all organizations today have the same legal status Thats exactly the issue

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.

> Limited Liability is a GREAT thing.

Limited Liability is a double-edged sword. It does reduce the risk of starting a company. But it reduces some mechanisms to protect society from misbehaving companies.

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

#197

Post by denton-scratch »

tmcb wrote: post #145
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…

> 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.

That's far from the worst outcome. You could lose your job, be sent to prison, be denied insurance.

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

#198

Post by kerkeslager »

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…

Why am I not surprised that the top voted comment on Hacker News is one that ignorantly states only one side of an issue which just happens to benefit corporations at the expense of everyone else? HN can always be trusted to present the pro-corporate, anti-human take.

"Under the patchwork of laws existing prior to adoption of HIPAA and the Privacy Rule, personal health information could be distributed—without either notice or authorization—for reasons that had nothing to do with a patient's medical treatment or health care reimbursement. For example, unless otherwise forbidden by State or local law, without the Privacy Rule patient information held by a health plan could, without the patient’s permission, be passed on to a lender who could then deny the patient's application for a home mortgage or a credit card, or to an employer who could use it in personnel decisions."[1]

That's what's on the HHS website, and that's a mild example of what was happening prior to HIPAA. Health information was being used to out gays and HIV patients, discover people's race, bypass due process, stalk women, etc. With data being weaponized against individuals more and more, we have good reason to believe that this would be worse in 2023 if these laws didn't exist, not better.

Yes, I'm aware of the burden that this puts on medical research. Behaving ethically is hard sometimes--get over it. You don't get a free pass to use people's private data without their consent. You might claim that you're only going to use that data for good, but the fact that you think bypassing people's basic human rights is acceptable shows that you don't have a working moral compass. You can't be trusted to only use people's data for good.

The fact that you wrote three paragraphs on this topic and didn't even mention the rights of the patient shows me I don't want you to have access to my medical data, let alone having authority to make decisions about who else can see my medical data. You're not a person who will make that decision ethically and responsibly.

[1] https://www.hhs.gov/hipaa/for-professionals/faq/188/why-is-t...

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

#199

Post by JohnFen »

jillesvangurp wrote: post #112
Calvin02 wrote: post #9

We need a nuanced approach. Blanket bans, while sounding good, can slow down pace of innovation in an area that desperately needs more of it - esp as the world is aging. This needs to be a combination of informed consent, clear access auditing and usage, and laws to heavily penalize misuse of this data.

Everybody wants privacy. But they also want treatment for whatever ails them. These things don't have to be mutually exclusive. Lack of information is a big challenge for doctors. When I say challenge, I mean people are dying needlessly because of their doctors don't have access to critical information and this leads to bad decision making. Here in Germany doctors are completely in the dark. Even basic information li…

> Everybody wants privacy. But they also want treatment for whatever ails them. These things don't have to be mutually exclusive

If I didn't have a modicum of assurance that what happens between me and my doctor stays between me and my doctor, I would absolutely avoid going to see a doctor to the greatest extent possible.

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

#200

Post by mindslight »

JohnFen wrote: post #182
dheera wrote: post #132

Earlier quoted context omitted.

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.

That's certainly the bullshit narrative the billing department vampires want to push on you (the whole medical system revolves around punting responsibility on to someone else). But very rarely when you receive medical services is an actual contract being formed. Contracts require defined consideration, and some arbitrary numbers pulled out of a hat after the fact doesn't meet that bar.
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