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Private firm uses foster children for aids trials { April 23 2005 }

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   http://www.nytimes.com/2005/04/23/nyregion/23aids.html?

http://www.nytimes.com/2005/04/23/nyregion/23aids.html?

April 23, 2005
Private Firm to Investigate AIDS Charges Against City
By LESLIE KAUFMAN

The city's Administration for Children's Services has hired an outside research firm to investigate allegations that the city inappropriately put foster children into medical trials for AIDS drugs in the 1980's and 1990's and that foster parents who objected to the trials lost custody of the children.

The agency also said it would form a panel of national health care experts to review the findings of the investigation, to be conducted by the Vera Institute of Justice, a New York-based nonprofit research group. The agency's commissioner, John B. Mattingly, said he thought that children's services had acted appropriately but that he has asked for the outside investigation to allay concerns raised by some reporters and by a minority advocacy group. Most of the children in the trials were African-American or Hispanic.

"We are taking this step because, while we believe that the policies in place at the time reflected good practice, we acknowledge the need for transparency in all of our dealings with the public," Mr. Mattingly said. "For us to be effective in our mission to protect New York City's children, we must have a sense of mutual trust with those families we seek to serve."

Accusations that the city had allowed babies in foster care who were not perilously ill to be used in medical testing of AIDS drugs were first reported in The New York Post in 2004.

At the time, officials from the agency and from the hospitals where the trials had taken place said they had been legitimately conducted on only foster children dying of AIDS who had no other medical options at the time.

But when Mr. Mattingly took over as commissioner last August, he decided to do an internal review of agency records to be sure that no inappropriate trials had been conducted.

Yesterday, he said that exhaustive reviews of available records had produced no evidence that the agency acted wrongly. The review by the agency staff, he said, determined that about 465 children had taken part in the trials between 1988 and 2001, with most participating before current treatments for AIDS became commonly available.

He said that according to the records only two children were removed from foster parents who refused to undergo the trials and that both of those children had serious medical conditions that required treatment.

But Vera Hassner Sharav, the president of the Alliance for Human Research Protection, a Manhattan-based medical watchdog group that has pressed for a more thorough investigation, said that the agency could not be relied upon to conduct a fair investigation. She said that documents filed with the federal government showed that many of the foster children were only presumed to have AIDS. "It's a hell of a thing to give a child toxic drugs when they are only presumed to have AIDS," Ms. Sharav said.



Copyright 2005 The New York Times Company


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