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Comment by awinter-py | Hacker News Reader

We should (as a society) consider open sourcing every medical record.

Medical privacy is ethically tricky. It (1) protects bad doctors, (2) makes it harder to develop treatments, (3) makes it hard for consumers to shop intelligently.

Medical privacy would be useful when negotiating cost of coverage with your insurer, but they have a contractual right to demand your complete medical record.

The best arguments I've heard for medical privacy are (1) you might not get a job if you're sick, (2) shame factor could prevent people from going for treatment and (3) you may not get a date if you have, say, herpes. (#3 is true but not necessarily a strong point from a social standpoint).

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Your #1, #2, and #3 are all the same thing, but I think it's hugely important:

Medical records can show all kinds of markers about your past / current behavior that let people paint pretty horrible assumptions about eachother.

Type 2 Diabetes? Man you must eat poorly.

Herpes? You must have gotten from being promiscuous and risky

Depression? Must not be able to deal with the shit that is real life.

Hormone therapy? Dental issues? Pain killers? Allergies? I mean the list is almost as long as the list of all medical issues that people.

Just about every medical condition, people paint with behavioral moral/ethical judgement which is almost entirely unfair. I think medical privacy is hugely important for society as we currently are, and losing it would not change these effects, but instead increase the ease to discriminate against them.

Also possible that we judge each other because medical privacy gives us a false impression of the world. Or because privacy allows people living in glass houses to throw stones.

Either way -- if opening medical records leads to new treatments, it may be worth the shame.

> Either way -- if opening medical records leads to new treatments, it may be worth the shame.

That's incredibly easy to say if you don't have any of the problems listed.

I have seasonal allergies and @codemac for some reason listed allergies (maybe b/c it's a preexisting condition and that's in the news?). But point taken.

There is nothing shameful about seasonal allergies.

I think AIDS is the trickiest one. It's not genetic (except for the very few people who are congenitally immune). It can kill you if you don't live in a rich country. Many people who have it are gay, which is illegal in a lot of places. (Even in the US C&BP keeps messing with that canadian guy for having grindr on his phone). STDs in general can reveal you've been cheating on / lying to a partner.

If you asked me 'should we publicize AIDS status in a lightly anonymized form', I say no, of course not.

But if you ask me 'do we want public records about AIDS treatments', absolutely.

(AIDS may be a moot point because there's recent CRISPR research about 'excising' AIDS infection in live mice).

My point: I'd like to have both things but to solve problems at a continent-scale we need transparency about disease and treatment.

Herpes. Mental illness. A history of suicide attempts. HIV+ status. The fact that you weren't born with your current gender. The fact that you've miscarried three times, and are currently pregnant. The fact that your child has fetal alcohol syndrome.

All super fun facts that people would love for friends, coworkers and strangers to be able to find out.

I understand that there are good arguments for releasing medical data, but this is just the "if you have nothing to hide, what are you worried about?" argument.

> The fact that your child has fetal alcohol syndrome.

Trust me, people will find this out after it's born, and they'll be plenty judgmental then.

And hey, rightly so.

This is overly judgmental.

Accidental pregnancies happen (even with contraceptive use), and can often not be detected until several weeks have passed. Even if alcohol consumption is stopped immediately, fetal alcohol syndrome spectrum disorder can still occur in the child, since development during the early stages of pregnancy is particularly sensitive to alcohol.

> Even if alcohol consumption is stopped immediately [after noticing you're pregnant], fetal alcohol syndrome spectrum disorder can still occur in the child

Technically can, but this is unlikely in the extreme. (Source: my mother, a practicing obstetrician.)

> Trust me, people will find this out after it's born, and they'll be plenty judgmental then. And hey, rightly so.

What you're describing is human scale judgment. Example: a church music director doesn't allow such a person to join the choir.

With medical privacy out of the picture, what you'd be rationalizing here would be internet scale judgment. E.g., a script kiddie trolls the set of all known people who had children with fetal alcohol syndrome in an attempt to trigger them to kill themselves.

Thank you for succinctly demonstrating why open sourcing medical records is a terrible idea.

To expand, here's a scenario: what if I'm a single father of a FAS child? What if the mother hid the pregnancy from me until birth? What if she hid the drinking from me? You're going to judge me and my hypothetical child for actions we didn't take, couldn't have prevented, and are dealing with the fallout of in the face of this kind of garbage?

All the judgement would sure help.

> All the judgement would sure help.

Being judged isn't supposed to help you any more than being thrown in jail is.

If you want to feel better about your life choices, you're welcome to watch reality television, instead of reading my hypothetical medical record.

I drew the analogy I did for a reason. Do you really think we imprison people so that we can feel better about ourselves?

Medical records can also be used as identification since they contain data that is unique only to you.

http://www.reuters.com/article/us-cybersecurity-hospitals-id...

It is very easy for the typical software engineer to come up with the brilliant idea of open sourcing everything without thinking of any of the consequences. But the real world is much more complex than that.

Simple solution. Make medical records privacy opt-in.

Most people won't bother (strong default effect), so lots of data for research, and those who care can still can have their privacy. It won't exactly be a random sample, but it should still be better than what's available currently.

Wont this create a "you have something to hide" effect?

I'm assuming making these record public in an anonymized way. If somebody wants your records directly nothing changes. So he doesn't know whether you're sharing your data or not.

Of course there's good chance he can find you in the anonymized dataset if it's detailed enough. But he can't be 100% sure it's you.

75% sure is bad enough, even if it isn't you.

The current law in the US is that insurers can't consider medical history (they can ask your age and whether you smoke).

Looks like that has a fair chance of changing though.

Sadly it does look like it might change :(

Do you really want to out every trans person who has told a doctor about it?

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