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 opinion pieces on the issue. Some of these are summarized below.
- Jim Spencer, Denver Post: The recent Associated Press report about foster children involved in AIDS drug studies is a "warning" because "[n]o ethical wiggle room exists when you use kids as guinea pigs," Post columnist Spencer writes in an opinion piece. Although the studies were "designed to save lives, not ruin them," researchers should have obtained the "proper permission" in order to make the "focus" that scientists were "helping the less fortunate," Spencer writes, concluding, "Instead ... the good news must share space with a caveat" (Spencer, Denver Post, 5/9).
Daytona Beach News-Journal: Foster children "deserve more protection, not less," and "cynically targeting" these children for drug trials is "wrong," a News-Journal editorial says. NIH should "immediately begin monitoring all trials involving children to ensure that federal protocols are followed," and laws should be "strengthened to punish the exploitation of children," including the suspension of funding for companies that violate the guidelines, the editorial concludes (Daytona Beach News-Journal, 5/7).
Denver Post: The government's "failure to make sure its own rules were followed" to protect foster children participating in drug trials "is unconscionable," a Post editorial says. Researchers should have taken the "responsible approach" and appointed advocates for the children because HIV-positive foster kids "already have been dealt some tough hands in life," but that "doesn't make them guinea pigs," the editorial concludes (Denver Post, 5/7).
Seattle Post-Intelligencer: Some researchers "defend" the trials, saying children had access to the latest treatment options, and statistics show that the number of AIDS-related deaths among foster children enrolled in the studies "dropped dramatically" during that time, according to a Post-Intelligencer editorial. However, the "direct correlation between the experimentation and the drop in deaths is unclear at best," and the "end-justifies-the-means argument is insufficient to excuse exploitation" of the foster children, the editorial concludes (Seattle Post-Intelligencer, 5/6).
Ventura County Star: Although the goal of the NIH-funded research was "noble," it "does not excuse" researchers from "failing to provide independent advocates for all the children in their studies," a Star editorial says. NIH should require all researchers receiving funding to provide advocates for trial participants because "vulnerable" foster children "deserve the highest protection society can offer," the editorial concludes (Ventura County Star, 5/8).
Virginian-Pilot: The "revelation" that researchers did not provide "even basic independent protections raises terrifying doubts about society's commitment to its most vulnerable members," a Virginian-Pilot editorial says, adding that researchers were "denying" foster children involved in the trials "the basic safeguards they'd promised." Assigning advocates for the children "would have done nothing to change" the benefits of trial participation and would have helped to "provide a haven for endangered children," like the foster care system is intended to do, the editorial says (Virginian-Pilot, 5/7).
Back to other news for May 9, 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.