Medical experiments conducted on vulnerable people, people who are unable to give consent or people who have been misled, are always wrong. It is also wrong when there is reason to believe that the person undergoing the experiment faces serious risks as a result. If you put the two together you have something we used to call a crime. In fact, we prosecuted the Nazis for this behavior.
But it turns out that we have been using children in foster care as if they were medical lab rats in some states.
Our laws vary from state to state. Some states such as Tennessee and Wisconsin simply don’t allow for foster children to be used in medical studies. California requires a court order. Other states allow foster children to be involved in medical studies but under varying criteria, the children are supposed to have independent advocates to protect their interests.
MSNBC reports that for the past two decades the government conducted experiments involving drugs for AIDS on foster children but without the legal protections they should have had.
“The practice ensured that foster children — mostly poor or minority — received care from world-class researchers at government expense, slowing their rate of death and extending their lives. But it also exposed a vulnerable population to the risks of medical research and drugs that were known to have serious side effects in adults and for which the safety for children was unknown.” (my emphasis)
The results of these experiments ranged from minor adverse side effects to “a disturbing higher rate of death among children who took higher doses of the drug.”
Most of these experiments were conducted in the 1990’s in seven states: Illinois, Louisiana, Maryland, New York, North Carolina, Colorado and Texas.
So what happened? The simplest way to put it is the rules were broken.
In Illinois, researchers signed documents promising to provide the affected children with advocates, but it never happened. Not for a single one of the 200 children in the study.
Less than a third of the children in New York City were provided with an advocate, despite the city’s policy requiring it. The same thing happened to the children studied at Chicago’s Children’s Memorial Hospital and Johns Hopkins in Baltimore.
Of course, one can point to the fact that state agencies gave consent for these children to be placed in the studies. And there were some who felt, as Marilyn Castaldi did, “That advocates weren’t needed.”
One can attempt to justify as Mark Kline of Texas did:
“To say as a group that foster children should be excluded from clinical trials would have meant excluding these children from the best available therapies at the time,” he said. “From an ethical perspective, I never thought that was a stand I could take.”
How is it ethical to conduct experiments with unknown risks and consequences on the most vulnerable people in America — children who have no parents and no one else who was watching for their interests?
We have been down roads similar to this before. Tests of everything from exposing people to radio and chemical weapons to mind altering substances were conducted on vulnerable people. Typically the people subjected to these studies were children as well as people who were sick or mentally disabled, many others were poor, racial minorities and prisoners; in other words, the less privileged classes were the classes used for tests.
During the Nuremberg Trials, several Nazi doctors and scientists claimed they were inspired by studies in the United States. Under, Operation Paperclip, the United States government recruited 1,600 Nazi scientists to do research for the U.S. government. In exchange for their research, these scientists were offered immunity from any war crimes they had committed, including experiments they conducted in Nazi concentration camps.
Instead of Nazis experimenting on people in concentration camps, we have world class scientists conducting experiments on foster children; instead of experiments that were intended to cause misery and suffering, these studies were intended to benefit children with AIDS.
In both cases, however, the subjects of the studies were vulnerable and there was no one there to look out for their interests. A civilized society is only as civilized as the way in which it treats its most vulnerable and in this respect, America has a long way to go.