Sunday, July 30, 2006

AIDS tests on foster children in the 1990s

I apologize for the intermission in my blog entries... I've been in California on a family vacation. During that time, I met with three wonderful people who are each working in their own ways to make a positive difference in foster care. It was definitely one of the best trips I've ever taken, but I'm sorry to be silent for so long!

I'd like to begin this blog entry by inviting readers to share specific cases of psychotropic drugging of California foster children. KCBS investigative producer Karen Foshay is very passionate about this subject, and your insights would add to her current research.

I have already passed on this request to several other sources, but I figured one more "shout-out" wouldn't hurt.

Historical prospective
In light of unresolved nationwide issues in drugging foster children, I wanted to turn back the pages of time to share another atrocity: Hundreds of foster children received experimental AIDS drugs in the 1990s without the oversight of medical advocates.

Yes, you read that correctly: Foster children who were HIV-infected were used to test potent AIDS drugs by federally funded researchers.

Using foster kids as guinea pigs
Testing took place in seven states: Texas, Colorado, New York, North Carolina, Maryland, Lousiana and Illinois. This research was funded by the National Instititutes of Health.

The guidelines for the "Protection of Human Subjects" require researchers to inform the subject of possible side effects and obtain parental consent.

Due to the lack of parental involvement, researchers initially promised NIH in writing that they would appoint medical advocates for each child, in accordance with federal law.

Where were the advocates?
Between 600-1300 foster children, ranging from infants to teenagers, participated in the HIV experiments. Many suffered side effects, such as rash, vomiting and plunging levels of infection-resisitant blood cells.

In some cases, medical advocates were promised but not provided. In others, research oversight boards later determined that medical advocates where not necessary.

-The Columbia Presbyterian Medical Center in New York provided advocates for 142 of the 465 foster children used by researchers to test AIDS drugs in their state. Approximately two-thirds of subjects did not receive advocates, which was in violation of state policy.

-Illinois officials reported that foster children tested at the Chicago Memorial Hospital received no medical advocates.

-At the John Hopkins University in Baltimore, medical advocates were also absent.

Where was the informed consent? What about a guardian at litem?

Did the end justify the means?
During the investigation led by the U. S. Office for Human Research Protections, medical researchers asked that the experiments be viewed within the context of the late 80's and early 90's, when a million Americans were estimated to be HIV-positive.

The Maryland medical oversight board claimed that, according to state policy, in trials where the child patients face minimum risk or are expected to draw direct benefit from the research, no medical advocate is required to oversee medical experimentation.

The ethical paradox was that foster children were recieving costly, life-extending care from the world's most eminent doctors, at a time when no other viable treatments existed.

John J. Farley, associate professor of pediatrics at the University Maryland School of Medicine said, "I join with my colleagues in feeling that they weren't exploited and probably a number of those children are alive today because they had access to those medications."

It would be difficult to verify or nullify the truth to his statement, since no further information was forthcoming about the subjects of the research. After denying medical advocacy to foster children, medical officials now claim to be protecting their confidentiality.

Foster children deserve medical advocacy
The staff of the Houston Chronicle wrote that, "Few members of society are more vulnerable than children without permanent parents. Foster care kids with dire illnesses are more fragile still."

They concluded that, "Because of their vulnerability, each of these foster children should have had a medically qualified advocate. It is a high standard of legal protection - but not too high for children with so few defenses."

As Representative Fortney Stark, from California pointed out that prisoners involved in medical research have advocates to oversee all participation in medical trials. Similar protections should be offered to foster children.

He said, "I think we'd all sleep a little better at night if we put in a requirement that children have sufficient advocacy."

Brainard, Jeffrey. Report faults studies using foster children. Chronicle of Higher Education, May 27, 2005, Vol. 51, Iss. 38, p.A23.
Editorial: Put child advocacy before science. Atlanta Journal, Constitution, Atlanta, GA, May 13, 2005, p.A14.
Hopper, Leigh. AIDS study of foster kids scrutinized: No advocates were provided for children given drugs in trials that included Baylor. Houston Chronicle, Houston, TX, May 5, 2005: p.B6.
Otto, Mary. Drugs tested on HIV-positive foster childre: Hill investigates ethical questions raised by 1990s trails in Md., elswhere. The Washington Post, Washington, DC, May 19, 2005: p.B1.
Spencer, Jim. Lack of informed consent dulls good news in kids' study. Denver Post, Denver, CO, May 9, 2005, p.B5.
Standards of caring: Legal protections for foster children should be at least as high as they are for kids with parents. Houston Chronicle, Houston, TX, May 14, 2005, p.B8.
Walters, Ron. Minority foster children used as guinea pigs in HIV tests. Tri-State Defender, Memphis, TN, June 4-June 8, 2005, Vol. 54, Iss. 23, p.4A.

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