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In reply to the discussion: We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier, [View all]moriah
(8,312 posts)All real diseases, when a kid actually has them. No, it's not *fun*. But it's a legitimate treatment for some actual psychological conditions. Given the family has been criticized for alleged hyperbole before, putting the specter of "child experimentation" out there -- when the only thing they did was to give her that institution's usual treatment for the disease they reasonably believed she had -- is going to make them seem like they continuously make bigger deals out of things than is required. Plays well with the Tea Party crowd and Freepers, not so well otherwise. So far I don't believe they've even presented evidence that she has been enrolled in any research studies at all, so this is mostly old news.
I've always defended the family. Naturally they are upset at the way their daughter has been treated. And while I question the reasonableness of believing she had Somatic Symptom Disorder in the first place, given that another team of doctors diagnosed her with a disease that explained all of her symptoms, if they honestly believed it was psychological then psychological interventions would be the appropriate standard of care.
And I do stand by my statement that I do not want to see wards of the state denied access to lifesaving treatments because of their experimental status. Research is not all bad. What about when the case comes up where the bio family and the State are both in agreement that the possible risk is massively outweighed by the potential benefits, but a stupid law is prohibiting their kid from getting to participate in the study?