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Were HIV Positive Foster Kids Used As Guinea Pigs?

Joe Gandelman | April 27 2005

A potentially big scandal is unfolding in New York City that — if proven true — has serious implications on two fronts.

The two-pronged allegations entail powder-keg charges that the city tested AIDS drugs on foster children and that if a foster parent objected the children were then placed elsewhere.

The New York papers have started breaking this story and if it isn't proven incorrect it could prove to be quite explosive. First, some tidbits from The New York Times:

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.

The Times' story gives Mattingly's explanations that nothing untoward happened. Some facts he offers:

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 says the agency can't be trusted to in effect investigate itself:

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.

And it doesn't end there.

News-Medical.Net focuses on the outrage and includes these questions raised by New York State Assemblyman Keith Wright:

--Who made the decision to administer the drugs?
--How old were the children, and where were they from?
--Given that this program began in an era when people had yet to fully comprehend the how and why people contracted HIV, were the children made aware of what medications they were taking, and for what they were taking them?
---Given that medical science was not nearly advanced at the time this program began, was sound medical science utilized in administration of these drugs?
--Were the foster or birth parents made aware, and was permission given?

Meanwhile, the AP has lots of info on the controversy and offers this on what comes next:

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.

If you ponder this case, you can see that the key questions (as from the ones Wright raised) are these:

If this indeed happened, what kinds of drugs were tested?

Who ordered them to be tested?

Who specifically got the drugs?

What, if anything, resulted from the drugs? Did the drugs help or hurt these children? If so, specifically, in what ways?

What are the specifics — even if it only occured with one case — regarding any foster parents whose kids were removed because they would not agree to it? What do these foster parents (if they are still around) have to say under oath to investigators? Every effort should be made to locate them.

On a case like this there seem to be several possible outcomes.

It could turn out that this is a case of a group and some elected officials making allegations that prove to be overblown. Credibility is like oil in a well. Once removed, you can't put more back in.

Or it could turn out that for some 20 years foster kids were used as human guinea pigs and pulled out of homes where their foster parents wouldn't agree. The argument will then be made that the intentions weren't bad and that if the drugs succeeded millions of lives could be saved. But if the allegations are proven true then those arguments, we are sure, will tested extensively by some lawyers who could become quite rich.