Parent advocacy groups blasted the city yesterday
for bullying parents to get hundreds of foster children to become
guinea pigs in AIDS medicine tests.
They told a state Assembly hearing that the Administration for
Children's Services violated its own guidelines to obtain foster
kids for clinical trials beginning in the late 1980s.
"If the mother refused consent, ACS would have taken the child
anyway and just charged her with neglect," Rolando Bini, head of
Parents in Action, told the legislators.
"Forced consent is no consent at all," he said.
Critics said ACS had rules that would have protected kids from
being improperly used, but the problem was getting the agency to
follow them.
"Parents do have the right to refuse [to grant consent]," said
Folasade Campbell, executive director of Concerned Citizen for
Family Preservation.
"But there's a threat of [accusing them of] medical neglect when
a parent refuses," she said.
During the hearing at 250 Broadway, members of two Assembly
committees heard testimony about the 465 foster children in the city
who were enrolled in AIDS drug tests until 2001.
"One of the big issues we're looking at is how consent was
gotten, if it was gotten," said Assemblyman William Scarborough
(D-Queens), chairman of the Assembly Children and Families
Committee. "That's an area that needs to be explored fully."
Last year, The Post reported abuses of the testing, including the
anguished account of a foster mother whose two HIV-positive children
were taken from her because she refused to give them a potentially
dangerous cocktail of AIDS medications.
ACS officials yesterday defended the use of foster kids in the
tests, saying it was the best way of combating the AIDS epidemic.
"Ninety percent of all children [with HIV in the city] were
enrolled in clinical trials . . . because family members, guardians
and caretakers all knew their greatest chance of fighting this
disease was enrolling in trials," Deputy Commissioner Jennifer Jones
Austin said.
Earlier this year, ACS hired a think tank, the Vera Institute of
Justice, to review medical records and interview parents and
guardians to determine what happened to the children.
Their final report will probably take a year, but Austin told the
legislators, "We have seen no evidence of any wrongdoing."
"It doesn't appear that any child died as a direct result of the
tests," she said.
But she added, "I can't definitively say that all consents were
obtained."