I have a BIG problem with this—and all cancer quackery—and that's informed consent. Quacks always overpromise and underestimate the risks. Also, these parents are the victims of a con and that's how I view these cases, as examples of fraud that actively harms the child.https://twitter.com/ABatemanHouse/status/1040657617109086210 …
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Here's an even bigger problem with this. The child is a separate entity, and subjecting a child to a completely unproven treatment ignores the rights of that child as a separate entity with his own rights. That the parents worked for the money matters not at all to me.
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Replying to @gorskon
We let parents make kids' medical decisions unless convicted of child abuse/deemed incompetent/etc; often parents chose things we may not support. If evidence that desired intervention is harmful, we should go 2 court. But if no evidence either way....leave it to the parents IMHO
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Replying to @ABatemanHouse @gorskon
I have been in the position of debating, at least w myself, whether parents taking their dying child to a quack is reportable abuse. It's a VERY difficult step to take; I have never done it.
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Replying to @SteveJoffe @ABatemanHouse
How about if the treatment involves repeated cerebral angiographies (up to 18) under general anesthesia (most of the kids are under 8) and the unnecessary placement of an Ommaya reservoir for intrathecal chemotherapy that is not indicated (resulting in one death that I know of)?
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Replying to @gorskon @SteveJoffe
If there is a death that was directly related to the intervention, then this clinic's intervention doesn't meet my defined parameters in which parental choice rules (where there is no evidence to either support or not support an experimental intervention)
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Also, don't forget that this treatment involves repeated invasive procedures (cerebral angiography), usually under general anesthesia, plus intrathecal chemotherapy. Here are some stories.https://respectfulinsolence.com/2018/07/17/clinica-0-19-making-dipg-history-part-3/ …
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