alt Hacker NewsI think what OP was trying to ask was why would a parent be willing to put their child at lethal risk, using an experimental treatment, for a condition that itself is not lethal? I don't have a kid with autism or a learning disability so I don't know how I'd handle it, but if I did, I'd probably choose to live with it and help the child make the best of it. I would not be reaching for someone's research project.
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Parents put their children at lethal risk (albeit small) for non-lethal conditions all the time.
Wisdom teeth removal under general anesthesia is around 1 in 100,000.
It doesn’t sound so crazy if the risks were presented as “only 10x as risky as wisdom teeth extraction”.
People without extensive scientific training can be easily convinced by an un-ethical expert that the risks are negligible.
That's why we need external controls, ethical commites and so on.
In this case, you're probably right, but there are definitely spaces between 'live with it' and 'lethal'.
I have multiple sclerosis and at the time of my diagnosis the best treatment available to me in terms of slowing the progression of MS had a risk of triggering a rare brain infection that would kill you. So it was a choice between treatments that didn't work as well but had lower risk and treatments with greater odds of being able to walk/work/not be in horrifying constant pain in 10 years but also a small chance of death.
These decisions can end up being horribly complicated, and they are definitely revealing in terms of your values.
It does not sound like the possibility of death was properly conveyed to the parents.
>But nowhere did the form explicitly indicate that any of this could end in death, nor did that come up during any conversations with Qiu or the other doctors, Jason and Linda say.