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After a year of internal investigation, the City of New York and its Administration for Children's Services (ACS) admitted this week that the City has forced its 465 or so foster children presumed to have been infected with HIV to participate in highly toxic "cocktail" HIV drug testing between 1988 to 2001 (New York Times; Newsday). Two of the children were removed from the foster parents because they refused to allow the children to participate in the experiment. Most of the children were Black or Latino, leading some to describe the experiment as a contemporary rendition of the notorious Tuskegee experiment. ACS insists that the experiment had been appropriate, but others allege that federal regulations were violated.
At heart of the controversy is whether or not the ACS acted ethically, that is, in the best interest of the children. ACS argues that the participation in the experiment benefited the children because they received the "cocktail" treatment long before it became available to the general public, but others point out that there is no evidence that all participants were sick enough to justify extremely toxic experimental drugs that have a wide range of known side-effects or even actually HIV-positive. A casual review of circumstances reveals that there appears to be a different set of medical ethics applied to children who do not have the parents to speak out on their behalf.
One of the interesting point to watch out for is what kind of new regulations might be proposed as the result of the controversy surrounding this particular case. A potential outcome is that there will be a new rule making it more difficult for the City to subject foster children under its custody to forced medical experiment and other medical procedures for which the benefit is not clearly established or the risk is substantial. Any move away from the custody rights based model to the bio-ethics based model for medical decision-making is a good news for children born with intersex conditions, although it is extremely infuriating that the basic human rights of hundreds of children have been violated in the process.
Posted by Emi on Apr 27, 2005