Researchers who conducted NIH-funded HIV/AIDS drug trials involving hundreds of HIV-positive foster children often did not appoint independent advocates for the children, despite policies requiring the assignments, according to a review of the studies conducted by the Associated Press. The studies tested AIDS-related medication in hundreds of HIV-positive foster children, allowing the children to receive treatment from top researchers but also exposing them to the risks of research and potentially serious side effects of the trial drugs. The research among foster children was most widespread in the 1990s and was conducted in at least seven states, including Colorado, Illinois, Louisiana, Maryland, New York, North Carolina and Texas. More than 48 HIV/AIDS-related drug studies involved foster children, most of whom were poor or minorities and ranged in age from infants to late teens, according to government records and interviews. In several of the studies, foster child participants reported side effects, including vomiting, rashes and rapid declines in their CD4+ T cell counts. Some children died during the studies, although state or city agencies could not find evidence that any of the children's deaths were caused by the experimental drugs (Kaiser Daily HIV/AIDS Report, 5/5). Several newspapers recently have published editorials on the issue. Some of these are summarized below.
- Atlanta Journal-Constitution: The researchers who "ignored standard informed consent protections" for the children "should get ... disciplined by the hospitals where they work and call into question their promises to abide by the rules in future experiments paid for by the government," a Journal-Constitution editorial says. NIH also "should seriously re-examine its reliance on local institutional review boards to safeguard the rights of human subjects in such experiments," the editorial says, concluding, "When experimenting on children in foster care, enlisting an independent advocate for the child should always be the first order of business" (Atlanta Journal-Constitution, 5/13).
- Cleveland Plain Dealer: Although enrolling the foster children in the trials "may have saved some lives," it is "disturbing to learn that independent advocates were not assigned to look out for the best interests of many of these children," a Plain Dealer editorial says. Researchers and foster care agencies "should have worked harder to avoid the perception that the rights of children in foster care are more easily discounted than those with mothers and fathers to protect them," the editorial says (Cleveland Plain Dealer, 5/10).
- Detroit Free Press: The trials "[o]n the surface ... appear to have preyed on some of society's most defenseless citizens -- poor and minority children in foster care," a Free Press editorial says. Although "[t]he situation is not quite that bad, ... it still stinks," the editorial says, adding that the government and researchers "owe" foster children "better treatment." Although foster children "must be protected from being used as lab rats, they shouldn't be denied possible lifesaving treatment, especially when more traditional options have proved fruitless," according to the editorial (Detroit Free Press, 5/12).
- Edwardsville Intelligencer: The "public deserves an answer" to many questions involving the trials, including "how much the quest for profits motivated researchers," an Intelligencer editorial says. The "sound" requirement of assigning advocates for the foster children highlights the fact that "[w]e need to be extra careful when it comes to protecting children, most of all those living in foster care situations," the editorial says (Edwardsville Intelligencer, 5/9).
- Loveland Daily Reporter-Herald: NIH in future research must "find ways to guarantee that federal protections are adhered to in every instance," a Daily Reporter-Herald editorial says. Although foster children "should not be restricted from access to promising treatments for whatever ails them, basic precautions must be followed in every instance," the editorial says, adding, "To do otherwise puts children at greater risk than reasonable or ethically permissible" (Loveland Daily Reporter-Herald, 5/11).
- South Florida Sun-Sentinel: NIH's decision to fund the trials but not ensure advocates were appointed to the foster children participating leaves the agency with "two choices: improve its oversight or shut down the program," a Sun-Sentinel editorial says. "Although children can benefit from the testing, they also can be harmed," the editorial says, concluding, "Advocates should be appointed to represent them, as required by law" (South Florida Sun-Sentinel, 5/8).
Back to other news for May 13, 2005
Reprinted with permission from kaisernetwork.org. You can view the entire Kaiser Daily HIV/AIDS Report, search the archives, or sign up for email delivery at www.kaisernetwork.org/dailyreports/hiv. The Kaiser Daily HIV/AIDS Report is published for kaisernetwork.org, a free service of the Kaiser Family Foundation, by The Advisory Board Company. © 2004 by The Advisory Board Company and Kaiser Family Foundation. All rights reserved.