NYC Children’s Services Agency Asks Research Firm To Investigate Research Involving HIV-Positive Foster Children

The New York City Administration for Children's Services on Friday announced it has hired the independent not-for-profit research firm Vera Institute of Justice to review research it conducted between 1988 and 2001 involving about 465 HIV-positive foster children, the New York Post reports (Seifman, New York Post, 4/23). Three New York City Council members in February 2004 called for an investigation into the research after the Post reported that 50 HIV-positive foster children from Manhattan's Incarnation Children's Center were involved in 13 clinical trials that were funded by federal grants and pharmaceutical companies, some of which involved combination antiretroviral drug therapy. ACS, which sent the children to ICC, requires parental consent for children to be involved in medical studies; if a parent cannot be located, the decision is made by the ACS commissioner and the agency's medical and legal divisions. However, the studies were abruptly stopped in 2002, and officials from ACS and New York-Presbyterian Hospital -- which was involved in some of the studies -- did not disclose whether any children died or experienced illnesses during the studies (Kaiser Daily HIV/AIDS Report, 3/2/04). An ACS internal review of the trials found "no evidence that the agency acted wrongly" in conducting the trials, according to ACS Commissioner John Mattingly, who was not in office when the trials were conducted, the New York Times reports. Mattingly added that only two children involved in the studies were removed from foster parents who refused to give permission for their participation in the studies and that both of those children had serious medical conditions that required treatment (Kaufman, New York Times, 4/23).

Independent Review Details
According to ACS, the Vera Institute will investigate whether the agency had the "necessary permission" to include the children in the trials, the AP/Las Vegas Sun reports. The institute also will review whether the children met the studies' medical criteria and if the enrollments were "appropriate given the medical knowledge of the time," according to the AP/Sun (Hajela, AP/Las Vegas Sun, 4/23). ACS also said it plans to form a panel of national health care experts to review the findings of the institute's investigation (New York Times, 4/23). Findings of the review are expected in three months, the Post reports (New York Post, 4/23).

Reaction
"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," Mattingly said, adding, "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" (New York Times, 4/23). However, Vera Hassner Sharav, president of the Alliance for Human Research Protection, which has accused ACS of "exploiting" the foster children, questioned whether any review called for by ACS would be "credible," adding that a federal investigation should take place, according to the AP/Sun. "These children are devalued, and the city and state devalued them further," Hassner Sharav said (AP/Las Vegas Sun, 4/23).