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PaperclipPerfector  1yr ago (text post)   3360 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.

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.

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