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PaperclipPerfector  1mo ago (text post)   2808 thread views

Small-Scale Question Sunday for September 29, 2024

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Another question for the medics among you. Shortly after I started in my previous job ~two years ago, my employer booked me in to undergo a full physical exam in a clinic. I underwent the exam and they gave me a clean bill of health. It's recently come to my attention that I may have a mild medical condition (nothing to be concerned about, before you ask), so I wanted to ask the clinic for the detailed results of my medical exam, to find out if the condition was present two years ago. They gave me a form to fill out, asking for my personal details and what information I want access to.

The form included this clause:

In certain cases, some data will be withheld by [clinic]; if it is the medical professional’s opinion that it is not safe to the data subject (yourself) to do so, or if [clinic] are not legally allowed to do so. Guide to Professional Conduct and Ethics for Registered Medical Practitioners (Amended) 2019, states that “Patients have a right to get copies of their medical records except where this is likely to cause serious harm to their physical or mental health.”

Pardon my French, but what the fuck? How grandiose and paternalistic can you get? Under what circumstances could it possibly be acceptable that a medic can arrogate themselves the responsibility to decline to inform an adult of sound mind that they have a serious medical condition? What is this, fucking Love Story?* "You have cancer, but I thought that finding out that you have cancer might make you sad, so I decided not to tell you that you have cancer."

*A movie in which a doctor tells a man that his wife is terminally ill without telling the wife herself.

You mentioned this isn't the U.S. so I can't help you toooooo much it's probably mostly boilerplate language that isn't intended to actually be used.

Exceptions may be something like withholding test results until they can call you or tell you to come in. You are supposed to find out you have cancer in the office with the doctor so they can calm you down, tell you the plan, and help you make decisions. Not because some automated portal suddenly interuptYOUAREGOING TO DIE DIE DIEDIEDIE.

It's jarring and not good for patient mental health.

The other example that sometimes comes up in the U.S. with our equivalent legislation is blocking mental health adjacent notes. You have patients who you will documented "patient threatened to murder this writer, and then said 'if you write that down I'll kill you.'" You'd document this and then block the note so the patient can't see it, to protect you, and to protect the patient from doing something to you and harming themselves in the process.

Some theoretical discussion exists about things like blocking notes that call patients obese because they don't like it, but it isn't really legal.

In the American context, the search terms you're looking for are the "information blocking rule" (which prohibits some restrictions and disincentives to accessing records) and its "preventing harms exception"; afaict, a lot of the discussion mirrors EU and UK matters.

The steelman is that there are a number of records that are messy:

  • Initial test records can be noisy or prone to false positives. A first-trial blood test with a high false positive rate, followed by confirming the analysis using a more precise second-level test is common problem, and delaying the announcement until the confirmation is a common practice.
  • Some patients with certain mental health disorders will fixate on subclinical details, often falling to unhealthy or dangerous practices to solve problems that weren't really problems to start with, or react with accurate diagnosis with denials and refusal to work with a doctor. Where a patient has already been diagnosed under such conditions, reducing specificity when presenting information to such patients is a rare but accepted practice.
  • There's a lot of controversy about genetic testing for certain conditions that have no cure or preventative treatment, and where the risk for a specific patient developing the disease is elevated but not certain, and what extent it is necessary to provide counseling before releasing that information. There have been documented cases of people committing suicide over a prospective neurodegenerative disorder.
  • The US version of the rule also allows some protections for second parties, generally under pretty outlier circumstances like a domestic violence abuser finding out that 'their' kid doesn't share their genes. I don't think the EU or UK variants have such an explicit exception, though.

But the potential problems and abuses are vast, and even these steelman cases are paternalistic.

While discussions of the rule and its exceptions in each context revolve around delays to accessing data, the strict text of the rule is not so limited: it allows doctors to fully withhold data, and when pressed about sufficiently iffy edge cases, there are outspoken doctors defending permanent withholding. To be fair, ethics groups like the AMA have pushed back against this view in recent years.

Under what circumstances could it possibly be acceptable that a medic can arrogate themselves the responsibility to decline to inform an adult of sound mind that they have a serious medical condition?

DNA testing reveals that the person is a child of incest.

If I was a child of incest, I'd want to know about it.

It's actually probably important to know, in that repeated incest is what drives genetic problems, so if I were a child of incest and more likely to carry recessive mutations I'd have been certain to marry one of the African or Chinese foreign exchange students to get as far away as possible.

This isn't how genetics works. Even if you are highly inbred, you can marry any member of your race who is not your relative and have as healthy babies as if you were not inbred. (Except if you're a woman and inbred phenotype affects pregnancy, but then outbreeding won't fix it either).

Maybe you know, maybe not, but incest doesn't increase number of recessive mutations at all, it increases chance of them to get in homozygote and make visible effect.

You can make argument that outbreeding is beneficial, but it won't actually depend on fixing recent inbreeding. With Africans, you'll be bringing some low IQ alleles and alleles for tropical environment that make no sense in temperate climate.

Since today it's possible to look at actual genes and being foreign student doesn't rule out they don't have recent ancestor with you, there is no reason for such far outbreeding.

This was mostly a joke about how easy it is for a white man to marry a Chinese or Nigerian foreign exchange student at any selective American college. Most likely outcome if I hadn't met my wife first, tbqh.

...being foreign student doesn't rule out they don't have recent ancestor with you.

My most recent possible common ancestor with a Chinese girl would be before the Magyars left the steppe, and my most recent possible common ancestor with a Nigerian girl might be the Great Rift Valley.

This is a US thing? I'm pretty sure that in the UK, this wouldn't fly at all. We're obliged to disclose all relevant information to our patients, though if memory serves there are criteria like mental incapacity where that's not strictly necessary.*

*My gut instinct was wrong. From GMC guidance:

You should not withhold information a patient needs to make a decision for any other reason, including if someone close to the patient asks you to. In very exceptional circumstances you may feel that sharing information with a patient would cause them serious harm and, if so, it may be appropriate to withhold it. In this context ‘serious harm’ means more than that the patient might become upset, decide to refuse treatment, or choose an alternative. This is a limited exception and you should seek legal advice if you are considering withholding information from a patient.

I certainly find this perplexing, I can't under any circumstances endorse people not being given medical records that they paid for (or were paid for on their behalf). I suppose this a clause more likely to be invoked in psychiatry than elsewhere, but it's not one I particularly want to use.

I live in Ireland.

Goddamn… I knew that jurisdictions were outsourcing medical policy to doctors’ associations, but I didn’t know it was this bad.

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