[jnakayama]

Interesting! I think neuropsychological hazard according to this typology sounds fitting. Reminds me a little bit of the scenario of what would happen if you knew the exact date and time of your death.

Maybe to add to what might be the rationale to have an op like this: I've recently been on a call where someone brought up a metric called quality-adjusted life years (something like: "Would I rather live another year relatively painless or five more years, but in constant excruciating pain?"). As far as I know, this is mostly used in insurance calculations (which struck me as a bit distasteful, but I didn't look into it deeply enough to make a fair judgement), but it's a good mental model for what people might use in their reasoning in such a situation. Maybe for the patients that decided to have the op, the knowledge of their condition was bad enough to substantially reduce their quality of life and hence lead them to accept far higher risks to alleviate this.

For the second dilemma: Maybe simply knowing about the condition running in your family is an information hazard too. For someone very prone to worrying, knowing for sure that they have the condition might also come as a strange kind of relief.

[neuroma]

Quality adjusted life years (QALYs) have been used in the UK for a long time, to evaluate whether and when treatments are offered through the NHS. It has its flaws, but its a good start. Generally a therapy needs to cost less than £30k per QALY. There are of course finessing processes to these decisions.