HIPAA was a stupid mistake by the Clinton administration. I really don’t care who has my medical history and the field of medical study would be infinitely better off if it was public.
Now that's a take I've never heard before. It'd be interesting to have an opt-in for sharing your medical history with entities, but there is no way in hell I'd be sharing information that is so easily weaponized against me.
> It'd be interesting to have an opt-in for sharing your medical history with entities
That already exists. It's baked into HIPAA (if you're talking about medical history collected by Covered Entities).
All "medical" data collected by direct-to-consumer products that aren't providing clinical care (think 23AndMe, or third-party services that allow you to book appointments with doctors in a Yelp-style interface) are not subject to HIPAA, so they already can legally collect (and sell) that data without additional consent.
Would you like employers to be able to pull medical history (using "background check" type firms) and able to deny employment based on your medical condition? Some employers may prefer not to hire anyone who has ever been on antidepressants, for example.
No, but health is already a protected class in employment laws. Any employer pulling or seeking that information in any way would open themselves up to a class action lawsuit by everyone who had ever been rejected from that company.
Jobs are touted as necessary as being part of modern society. Judges, legislators, and commmunity leaders expect you to have a job and consider whether or not you have one as judgement of your character. The health of society and a community are measured by the percentage of adults that have jobs. As long as this is true, then strict freedom of association should have lower priority than making sure everyone is employed.
I sort of agree with you on the surface (who cares if some rando knows I take thyroid meds?), but the ways medical data can be used against you are very insidious. Even now that preexisting conditions are history (AFAIK), if your data were public, people could target you (or the elderly) for snake oil cure scams, financial scams (especially if they knew you were dying of cancer), identity theft scams (send you fake bills and steal your money). Anything sexual or psychiatric could be used to blackmail you, all sorts of cruel things could be done, it just takes some imagination.
So, treatment for an STD, for example, should be public information? What if that treatment occurred while the spouse was on a six month military deployment?
There has to be a better example of why privacy is important than keeping infidelity and having an STD secret from your military deployed spouse.
Marital infidelity rate is about 50% - and that's just for self-admitted [1]. Actual rates are likely much higher. A large majority of people of both sexes admit that they would have an extra-marital affair if they believed they wouldn't get caught.
Anecdotally, when I was I the military I saw much, much higher than 50% when spouses were deployed. This seems to be a pervasive issue [2].
Seems like a culturally relevant health issue to use as an example.
While divorce may be culturally relevant, I read the phrasing
> What if that treatment occurred while the spouse was on a six month military deployment?
as indicating that the STD treatment would be kept from the spouse. While each individual has a right to privacy, cheating on an away spouse, getting an STD and treatment, and then keeping it secret from the spouse is pretty shitty, and is especially bad under the guise of "right to privacy". "I'm not going to tell my spouse I had an STD, they have no right to know" is not what medical information privacy is about.
We can talk about the value of someone's medical information not being public without evoking a spousal relationship as some kind of reason for privacy.
And when we're talking about keeping medical information private, we're trying to avoid harm to the person the information is about. Someone who is cheating and/or getting STDs without telling their spouse is harming the spouse.
> is not what medical information privacy is about
It is exactly what medical privacy is about. Embarrassing and potentially life changing issues come up routinely with medical privacy. These are things that primary care physicians and staff grapple with on a daily basis (and that I did as a medical guy in the military).
The infidelity example I used was actually part of one of the many HIPAA training classes that I've attended over the years. In the (real life) example the nurses were gossiping about the case in the elevator. It happened that a family member was in the elevator with them.
> Someone who is cheating and/or getting STDs without telling their spouse is harming the spouse.
Someone who has the flu and goes to a restaurant is actively harming the staff and other customers. Should we have a public registry for anyone who gets the flu?
Someone who has HIV and has unprotected sex is actively harming/killing their partner (and has been prosecuted as such). Should we make everyone's HIV status public?
I'm sorry you find the subject of infidelity distasteful, but if you work in healthcare at all you'll quickly come to realize that many personal health issues that are commonly treated are deeply embarrassing and potentially socially devastating to the patient.
Hence the need for stringent medical privacy protection.
> The infidelity example I used was actually part of one of the many HIPAA training classes that I've attended over the years. In the (real life) example the nurses were gossiping about the case in the elevator. It happened that a family member was in the elevator with them.
As I said, I read the original line as being specifically about using medical information privacy protection to keep the information from the spouse, and I think that's a less-than-robust example. I now understand that that wasn't your intent. Mentioning nurses gossiping and discussing patients in an unsecured location adds detail that makes it more robust.
> So, treatment for an STD, for example, should be public information? What if that treatment occurred while the spouse was on a six month military deployment?
My position is that the answer to the first question should be "no": treatment for an STD should not be public information. The answer to the second question has no bearing on the answer to the first, but it is presented/worded as if it should.
That the infidelity and STD treatment occurred while the spouse was deployed distracts from the fact that nurses shouldn't be gossiping in crowded elevators at all. Medical professionals shouldn't be gossiping in crowded elevators independent of the if the spouse is in the military or not or is deployed or not.
One of the catalyst for that were that insurance companies were kicking people off coverage as they knew about increased risk.
I have a female family member who never got a genetic cancer lab test because a positive result came with risks of her getting kicked off private insurance. Even though her sister had cancer at 30 and her paternal line had tons of history of women dying young for “woman issues” as it was called back then.
Anyway she assumed she had the genetic mutation but never could get the preventative surgery she should have because insurance wouldn’t approve it without the positive lab results confirming she was at high risk for cancer.
And beyond the most obvious stuff too. I worked for a company that ran claims benefits management systems. We had regular inquiries from our customers (insurers) saying that they had genealogy databases and wanted to be able to mine not just their own systems for "increased familial risk" based on claims history, but wanted to be able to get this information from "partner" (not actual partners, just "our other customers") databases similarly.
We would not, thankfully. But many of them asked. Some, repeatedly.
Lots of downvotes for this comment. Yet it represents the prevailing public opinion on privacy (even if the polarizing point about a particular US president is removed).* How will the privacy landscape change if the vast majority of people don't care?
*Apologies for the excessive alliteration. Didn't see until I submitted.
