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PaperclipPerfector  1mo ago (text post)   2809 thread views

Small-Scale Question Sunday for September 29, 2024

Do you have a dumb question that you're kind of embarrassed to ask in the main thread? Is there something you're just not sure about?

This is your opportunity to ask questions. No question too simple or too silly.

Culture war topics are accepted, and proposals for a better intro post are appreciated.

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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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