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Study: NY Foster Kids Not Exploited for AIDS Researchby Kilian MelloyWednesday Jan 28, 2009 Charges that foster children in New York city were exploited as test subjects for HIV and AIDS medications have not been substantiated by an investigation spurred by the allegations.
A Jan. 27 article in The New York Times said that following allegations several years ago by Liam Scheff, a Boston journalist, advocates and city councilors in New York became concerned.
The resulting investigation--carried out at the city’s behest by the Vera Institute of Justice--looked into whether minority children were selectively enrolled in experimental drug trials, and whether some of the children involved might have been subjected to the medications without proper parental permission.
The study, released Jan. 28, concluded that none of the children involved had died due to the trials, which lasted from late in the 1980s until 2005.
The drug trails involving children began at a point in time when there were no drugs specifically for children living with AIDS or HIV, the article said.
The investigation found that the city’s child welfare officials had acted with the best interests of the children at heart. Though more of the children included in the study were indeed minorities, the rate of infection in the city affected more minorities overall, meaning that the racial makeup of trial subjects as a whole was not out of proportion to the segments of the city’s population hardest hit by the pandemic.
However, though no evidence of malice was uncovered, the investigation showed that some laxness seemed to have crept into the administration of the trials, with significant number of records (21 percent) lacking official medical consent forms and some records including hand-written notes of permission instead, in violation of federal and city guidelines alike.
Noted co-director of the investigation Timothy A. Ross, "There were clearly breakdowns in the implementation of this policy."
For example, besides the lack of medical consent forms, a number of young test participants were included in trials that did not receive scrutiny from a committee dedicated to medical oversight.
Others were given test medications that had not received a recommendation from the panel, the article said.
However, Ross also pointed out that, "When we read through an amazing volume of material, we found that Children’s Services were aware that [the composition of the children’s cohort of trial subjects] was a very sensitive issue for a lot of important historic reasons."
Ross added, "Children’s Services did research on the rules and regulations that applied, and developed a reasoned policy in the late 1980s.
"The standard for enrolling kids in foster care that the child welfare agency used was higher than the federal standard."
Other charges that had been leveled were also found not to have support by the facts uncovered.
The article quoted John B. Mattingly, the Administration for Children’s Services commissioner, as saying of the investigation, "In very general terms, it puts to rest the most egregious charges that were being made by a few people three or four years ago.
"No children were yanked from their homes" to fill spots in the trials, Mattingly said.
"That is all completely false."
Though twenty-five children did die in the course of the trials, none of them were found to have died as a result of the trials.
Still, Scheff was cited as expressing skepticism.
The article quoted from an email reportedly written by Scheff. "Now they admit that the children died, but, oh, it couldn’t have been the drugs.
Added the email, "How do they know? How do they tell the difference?"
The email claimed that among the drugs being tested were some that the FDA later issued warnings about.
The email added that those medications "caused permanent injury and painful death in adults who have taken the exact same drugs at normal prescribed doses.
"These children died, and countless others were made sick while taking these drugs, because of a diagnosis that is itself overly harsh, [and] overly deterministic," the email said.
There are no children currently participating in drug trials in the city, according to Mattingly, who said that records are now stored more efficiently using an electronic system.
Kilian Melloy reviews media, conducts interviews, and writes commentary for EDGEBoston, where he also serves as Assistant Arts Editor.
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