HIV kids in care may have had their rights violated in drug trials

Apr 23 2005

Children's rights advocates are demanding an independent review of a New York city agency's program which subjected more than 400 HIV-positive foster children to clinical trials for AIDS drugs after children's rights advocates said it amounted to exploitation.

The commissioner of the Administration for Children's Services, John Mattingly, says the inquiry will investigate whether the necessary permission had been given from parents or guardians to include the children in the research which went from the late 1980s to 2001.

The tests were conducted at some of the best-known hospitals in the city with the approval of the National Institutes of Health.

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 agency does not believe there was any unethical behaviour and wants to ensure the program's policies were proper and had been strictly followed.

Mattingly says that if the community feels they have done the things some groups accuse them of, there will not be the trust to investigate abuse and neglect. He does not believe any children died from their participation in the research.

Vera Hassner Sharav, president of the Alliance for Human Research Protection has accused the agency of exploiting the children and subjecting them to medical harm and questioned whether any review called for by the agency itself could be credible. Sharav wants a federal investigation saying the children have already been devalued and the city and state devalued them further.

The inquiry will be conducted by the Vera Institute of Justice, a nonprofit organization in New York.

The review will examine whether the children fitted the medical criteria to be included in the tests and if the enrolments were appropriate given the medical knowledge of the time.

Investigators will attempt to trace as many of the participating children as possible to assess their current medical condition, and the agency will also review records to see if there were more children who participated.