Vera Institute of Justice Final Report (2009): 80 NYC Foster Children Died in AIDS Drug Trials
medical-apartheidBackground:
Between 1985 and 2005, at least 532 infants and children in New York City were conscripted as human subjects of clinical trials testing experimental AIDS drugs and vaccines. The New York City Agency for Child Services (ACS), the custodian of foster care children, gave agencies such as Incarnation Children’s Center, permission to conduct experimental AIDS drug and vaccine trials in foster children in its care. ICC received payment for hosting these experimental trials; the medical research centers that conducted the trials received significant grants from both the National Institutes of Health and the manufacturers of the drugs. Among them iss Merck, BristolMyers Squibb, MicroGeneSys, Biocine, Glaxo Wellcome and Pfizer.
In 2004, after ascertaining that there were legitimate issues of concern and the possibility of child abuse–some of which were enumerated in a report by Liam Scheff — The House that AIDS Built, the Alliance for Human Research Protection filed a letter of complaint with the federal Office of Human Research Protection (OHRP).
The AHRP complaint focused on the enrollment of particularly vulnerable foster children in AIDS drug / vaccine experiments and system wide institutional failure to protect the individual child’s best interest in accordance with Federal regulations mandating an independent advocate for each child who is authorized to deny permission for a child’s enrollment in research.
The foster children enrolled in the AIDS trials were denied the dignity of their human right by having been enrolled in medical experiments without the consent of an independent advocate — as mandated by federal regulations.
ACS guidelines stated: “Separate consent need not be obtained for each child.”
This waiver, we believe, is unconscionable; it denied these children their basic human dignity and ascribed to them the status of guinea pigs. The case of the NYC Guinea Pig Kids was included in Harriet Washington’s book, Medical Apartheid (2007.
ginea-pig-kids
In November 2004, BBC aired the documentary film– Guinea Pig Kids by prize winning independent documentary film maker, Jamie Doran. After airing the disturbing documentary just once, the BBC came under intense pressure from powerful stakeholders who attempted to politicize the documentary–30 NYC institutions were involved in these AIDS drug experiments in foster children. The BBC abruptly pulled the controversial film from its website, but the 26 minute video is accessible on YouTube . (Transcript is available here and here)
Subsequent independent investigations — by the Associated Press, by the federal Office of Human Research Protections; and by the Vera Institute of Justice — confirmed that ethical standards and federal regulations had been violated. The investigations confirmed that most children did not have an the protection of an independent advocate to give or refuse consent to experimental interventions. Furthermore, the investigations confirmed that the children used in the experiments were predominantly African American (64%) and Latino (30%) raising the specter of racially discriminatory selection. And the Vera Institute, relying mostly on the city agency ACS documents, confirmed that children suffered serious harm — 80 of who died.
The Associated Press reported that the scope of these experiments was much wider; extending beyond New York to “at least seven states.” Among them: Illinois, Louisiana, Maryland, New York, North Carolina, Colorado and Texas. AP reported that more than four dozen different studies were involved. The foster children ranged from infants to late teens, according to interviews and government records.
More in article.
https://ahrp.org/2009-commissioned-investigation-absolves-nyc-of-80-foster-children-deaths-in-aids-trials/