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For those concerned about privacy violations, this should be rammed home as an argument against centralized collection of medical health data.

o___ 5y ago
Not to be confused with centralization of health services.
dariosalvi78 5y ago
it's actually an argument in favour of well-protected centralized collection. It's more probable that smaller entities arre less protected than bigger ones even if the data they can disclose is more limited.
- indymike 5y ago
  > It's more probable that smaller entities arre less protected than bigger ones Size of an organization is not a good proxy for quality of security. Evidence: Colonial Penn, the DC Metro Police Department, Experian, Target, etc...
londons_explore 5y ago
I believe that if all health records leaked tomorrow, the world would end up a better place. Sure, someone might get more expensive insurance quotes or made fun of for having ADHD, HIV or acne treatment... But I think that would be outweighed by health benefits by combing the data for correlations and causations that have been unidentified in the past. Being able to shut down things that are poisoning millions of people, but to such a minor extent it isn't immediately obvious, would have a big benefit for society.
- chopin 5y ago
  The upsides may come. The downsides will come. I am pessimistic on this one.
  - JohnPrine 5y ago
    You don't think the upsides of releasing the largest and most complete dataset on human health in history would be inevitable? I'd say the upsides and downsides would both certainly come
- trutannus 5y ago
  > I believe that if all health records leaked tomorrow, the world would end up a better place Let's say I'm a Saudi National, who worked in the United States. While there I disclosed to a doctor that I'm gay. I return to Saudi Arabia. This document gets leaked. How exactly does this make the world a better place? Summary of possible outcomes: https://en.wikipedia.org/wiki/LGBT_rights_in_Saudi_Arabia#Summary_table https://en.wikipedia.org/wiki/LGBT_rights_in_Saudi_Arabia#Su... Notice the first line: Same-sex sexual activity: Fines, prison time up to life, and capital punishment.
  - Fernicia 5y ago
    How does this refute OP's point? He proposed that the benefits outweighed the downsides, not that there weren't any downsides. Your point is that there are ultra-low frequency, high salience risks. This doesn't speak to the argument at all.
    - trutannus 5y ago
      > He proposed that the benefits outweighed the downsides I thought it was self-evident. Killing someone innocent for the good of others is never acceptable; people are ends in themselves. This is a general precept in most ethical systems with the notable exception of Millian Utilitarianism. To be clear, I am not making an argument against justifiable self-defense, as that is almost always accepted as a different kind of situation. Example: we allow people to be killed for the good of others as long as their death allows the survival of more people. This is the poster's argument distilled. As such, it would be morally justifiable to kill random people for their organs, as one person contains enough organs to keep dozens of people from dying. If you need a liver, and your neighbor needs a spleen, then there would be nothing wrong about abducting the first person you see, butchering them, and taking what you need. This argument is essentially that we should allow people to be killed, harmed, maimed because the number of people it help would outnumber the number of people harmed. They are the same argument. They both treat people as means rather than ends. There are many nations in the world where you can be brutally killed for being gay, or any number of other things which shows up in medical records. If we include imprisonment, the number rises. The cost isn't just "some people might get embarrassed". It's a lot more like "hundreds of thousands of people will be brutally murdered by others or their state".
- kazinator 5y ago
  In other words, you can't imagine this disclosure of data being useful for research, if it is done in such a way that individual identities cannot be recovered to it for the purposes of discrimination?
- perl4ever 5y ago
  You are inadvertently trivializing the consequences. If someone has to pay a bit more for insurance or whatever, that may not sound like a big deal and also morally justifiable if you assume someone is always willing and able to evaluate risk accurately. However, some diagnoses are treated as "unknown unknowns" rather than quantifiable risks. In that case, it's likely that there will simply be nobody to accept them at all. The discrepancy between this treatment of a risk as effectively infinite, because nobody will take it on, versus the fact that it is really finite, constitutes economic destruction that would be caused by the disclosure of the diagnosis. Right now there are restricted circumstances where things have to be disclosed. But it's relatively tolerable because it's limited. For instance, you might not be able to get life insurance, but at least you can hold a job, have health insurance, live where you like, etc. Taking all that away from millions of people seems not a lot kinder than just liquidating them.

o___ 5y ago

Not to be confused with centralization of health services.

dariosalvi78 5y ago

it's actually an argument in favour of well-protected centralized collection. It's more probable that smaller entities arre less protected than bigger ones even if the data they can disclose is more limited.

indymike 5y ago
> It's more probable that smaller entities arre less protected than bigger ones Size of an organization is not a good proxy for quality of security. Evidence: Colonial Penn, the DC Metro Police Department, Experian, Target, etc...

londons_explore 5y ago

I believe that if all health records leaked tomorrow, the world would end up a better place. Sure, someone might get more expensive insurance quotes or made fun of for having ADHD, HIV or acne treatment... But I think that would be outweighed by health benefits by combing the data for correlations and causations that have been unidentified in the past. Being able to shut down things that are poisoning millions of people, but to such a minor extent it isn't immediately obvious, would have a big benefit for society.

chopin 5y ago
The upsides may come. The downsides will come. I am pessimistic on this one.
- JohnPrine 5y ago
  You don't think the upsides of releasing the largest and most complete dataset on human health in history would be inevitable? I'd say the upsides and downsides would both certainly come
trutannus 5y ago
> I believe that if all health records leaked tomorrow, the world would end up a better place Let's say I'm a Saudi National, who worked in the United States. While there I disclosed to a doctor that I'm gay. I return to Saudi Arabia. This document gets leaked. How exactly does this make the world a better place? Summary of possible outcomes: https://en.wikipedia.org/wiki/LGBT_rights_in_Saudi_Arabia#Summary_table https://en.wikipedia.org/wiki/LGBT_rights_in_Saudi_Arabia#Su... Notice the first line: Same-sex sexual activity: Fines, prison time up to life, and capital punishment.
- Fernicia 5y ago
  How does this refute OP's point? He proposed that the benefits outweighed the downsides, not that there weren't any downsides. Your point is that there are ultra-low frequency, high salience risks. This doesn't speak to the argument at all.
  - trutannus 5y ago
    > He proposed that the benefits outweighed the downsides I thought it was self-evident. Killing someone innocent for the good of others is never acceptable; people are ends in themselves. This is a general precept in most ethical systems with the notable exception of Millian Utilitarianism. To be clear, I am not making an argument against justifiable self-defense, as that is almost always accepted as a different kind of situation. Example: we allow people to be killed for the good of others as long as their death allows the survival of more people. This is the poster's argument distilled. As such, it would be morally justifiable to kill random people for their organs, as one person contains enough organs to keep dozens of people from dying. If you need a liver, and your neighbor needs a spleen, then there would be nothing wrong about abducting the first person you see, butchering them, and taking what you need. This argument is essentially that we should allow people to be killed, harmed, maimed because the number of people it help would outnumber the number of people harmed. They are the same argument. They both treat people as means rather than ends. There are many nations in the world where you can be brutally killed for being gay, or any number of other things which shows up in medical records. If we include imprisonment, the number rises. The cost isn't just "some people might get embarrassed". It's a lot more like "hundreds of thousands of people will be brutally murdered by others or their state".
kazinator 5y ago
In other words, you can't imagine this disclosure of data being useful for research, if it is done in such a way that individual identities cannot be recovered to it for the purposes of discrimination?
perl4ever 5y ago
You are inadvertently trivializing the consequences. If someone has to pay a bit more for insurance or whatever, that may not sound like a big deal and also morally justifiable if you assume someone is always willing and able to evaluate risk accurately. However, some diagnoses are treated as "unknown unknowns" rather than quantifiable risks. In that case, it's likely that there will simply be nobody to accept them at all. The discrepancy between this treatment of a risk as effectively infinite, because nobody will take it on, versus the fact that it is really finite, constitutes economic destruction that would be caused by the disclosure of the diagnosis. Right now there are restricted circumstances where things have to be disclosed. But it's relatively tolerable because it's limited. For instance, you might not be able to get life insurance, but at least you can hold a job, have health insurance, live where you like, etc. Taking all that away from millions of people seems not a lot kinder than just liquidating them.