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Comment by fumeux_fume

4 hours ago

The linked post about his treatment is basically a vanity article; low in useful information, but high in vague assertions and platitudes. There's also a link to a post griping about the red tape someone experienced while trying to self-treat their dog's cancer that's weird. I clearly live in a different world than these people.

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fumeux_fume

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dekhn  4 hours ago

This is a common trope in the tech field- successful tech person who is good at tech gets disease and wants to help cure it. It's easy to generate a lot of data these days (whole genome sequencing, various tests) but the reality is that turning that data into actionable knowledge is remarkably difficult.

Much of the red tape exists to help people avoid making common mistakes that aren't obvious until you've been through the process a number of times (other red tape just exists to gatekeep unnecessarily).

dasil003  2 hours ago

It's wild to me to hear this being spun as vanity, like it's some influencer clickbait or linkedin slop. You could argue anyone posting anything online is driven by vanity, but in this case we're talking about someone who took agency in his own medical outcome, and essentially experimented on himself. Sure it was selfish in the sense that he didn't want to die and he bent all his effort and resources to it, so what? I don't see exercising ones will-to-live in this way being a huge moral gray area. Other commenters are saying why don't we fund more research? Well sure we should do that too, but it's important to recognize that the type of approach he took here only works because it was one individual willing to combine a significant amount of personal effort with his own moral authority to try out risky things on himself. Even with orders of magnitude more funding, you can't ethically do this kind of thing without the consent of the patients, and there's not enough data on these types of approaches to adequately describe the risks to patients if they aren't specifically motivated to lean into the details like this guy did.