| Replaced_Texan |
12-02-2004 07:18 PM |
Quote:
Originally posted by Sidd Finch
Plus no one quite cares enough to complain.
Seriously -- I know nothing about medical research beyond that it involved nude mice (heh-heh). Is this sort of thing -- testing drugs on children without them knowing about it -- normal? Who consents on behalf of a foster child?
I am reminded of the Tuskegee syphillis experiments. Is that wrong?
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Whoever is the guardian consents on behalf of the children. My guess is that it's generally a foster-parent, who has competing interests (especially if there is a chance of an accusation of child-abuse for withholding consent). I haven't seen the documentary, so I'm not sure if consent is given by individuals or a system.
The thing is, clinical trial research should never be presented to anyone as beneficial to the subject. If I am testing out a new anti-depressant, I should go into the study aware that I'm not taking the drug to be treated for depression. I'm merely testing the drug. It may work, it may not work; and I shouldn't rely on my being part of the clincial trial for my treatment (though I may have to alter my treatment in order to test out the drug). If I suffer adverse effects from testing, I should be discontinued from the study and then treated for depression in another way. Meaningful consent has not been given if the subject thinks that they will benefit from participating in the study.
Some human subject research on foster-children is probably a good idea, especially public health and education research (all of that would generally have to go through an IRB for approval first). So if some researcher wanted to look into, say, the exercise habits of foster children or their relative general health, I'd have no problem with the study going forward. It's also possible that this particular population is the only population that can test pediatric HIV drugs. I'm not sure, but I wouldn't be surprised if kids with HIV are more likely to be the offspring of IV drug users who ultimately lose custody. (Though my guess is that the demographics of HIV positive people has changed dramatically in the last five to eight years. My public health announcement of the day: use a condom. HIV infections are on the rise in the straight population in the US.) If there's no other population to test potentially beneficial drugs on, then it makes sense to go ahead with clincial trials, under very controlled circumstances. If I were sitting on an IRB approving this type of trial, I'd be looking for all sorts of protections on the kids. The BBC synopsis made it sound like adverse events were not being reported as such, which is just bad research. |
