A city agency that put more than 400 HIV-positive foster children into clinical trials for AIDS drugs has asked for an independent review of the program after children’s rights advocates said it amounted to exploitation.
John Mattingly, commissioner of the Administration for Children’s Services, said the inquiry would investigate whether the agency had the necessary permission from parents or guardians to include the children in the research from the late 1980s to 2001.
The agency stressed that it does not believe there were ethical lapses, but it wants to make sure the program’s policies were proper and had been strictly followed.
“If people in our community begin to feel we have done the things these fringe groups are saying, the community won’t be able to trust us to investigate abuse and neglect,” Mattingly said Friday.
The tests were approved by the National Institutes of Health and were conducted at some of the best-known hospitals in the city.
However, advocates like the Alliance for Human Research Protection have accused the agency of exploiting the children and subjecting them to medical harm.
'These children are devalued'
Vera Hassner Sharav, president of AHRP, questioned whether any review called for by the agency itself could be credible. She called for a federal investigation.
“These children are devalued,” she said, “and the city and state devalued them further.”
The Vera Institute of Justice, a nonprofit organization in New York, will conduct the inquiry. The group did not immediately respond to a call seeking comment Friday.
The ACS said around 465 HIV-positive children were enrolled in drug tests between 1988 and 2001, the majority before 1996. The tests were conducted to help determine what kind of drugs would combat HIV and AIDS in children.
The review also will examine whether the children fit the medical criteria to be included in the tests and if the enrollments were appropriate given the medical knowledge of the time, according to the ACS.
Mattingly said he did not believe that any children had died from their participation in the research.
He said investigators will try to find as many of the participating children as possible to assess their current medical condition, and the agency will also be reviewing records to see if there were more children who participated.
