In the past two years, the child-protective service agencies of three states have each tried to turn one or two children, having rare genetic disorders, into wards of the state. In every case, new doctors took over the children’s care and did not treat them appropriately. As shocking as these episodes are, this has happened before. Ten years ago a scandal broke involving other experiments on wards of the state. The case included a foster-care agency in New York City, fifty children in their care, and thirteen phase-one trials of drugs to treat HIV-AIDS. Several child advocates and professors of ethics thought they’d stopped the practice. They haven’t. The experimenters learned from that case and changed tactics. Until more child advocates connect such cases, such abuses will happen again. And again, and again, and again.

Fifty wards of the State: the ICC case

A Wistar laboratory rat. Photo by Janet Stephens, National Cancer Institute

ICC in this case stands for Incarnation Children’s Center.  The ICC takes care of children suffering from HIV-AIDS. But for two decades, according to the Associated Press and the New York Post, ICC allowed medical researchers to experiment on the children in their care. These were phase-one trials, the kind researchers run to be sure the drugs are safe. They were not safe. One nurse describes the horrors she saw from 1989 to 1993:

We were taught that any symptom we saw was HIV-related. The vomiting, diarrhea, wasting syndrome, the neurological side effects – they were dying. There was death.

The nurse who said that, tried to adopt two of the children. Then she refused to give the drugs. So the Administration for Child Services (ACS) took the children away from her.

The researchers were either government researchers or worked for big drug companies. How could they get away with this? Simple. All the children in the studies were wards of the state of New York. ACS placed them with ICC for care. The Alliance for Human Research Protection said then:

The most vulnerable, disadvantaged children are being exploited by powerful entities and used as guinea pigs as if they were not human beings.

This scandal broke in February of 2004. (The AP didn’t cover the story until more than a year later.)

Wards of the state: not enough protection

In 2009 two shocked scientists reviewed the regulations on experimenting on wards of the state for the Journal of Pediatrics. Most adult patients can decide for themselves whether they want someone to experiment on them. Most children have their parents to protect them. But wards of the state must rely on the state. And as the ICC case shows, those children can’t rely on the state. Because the state is in on it.

The problem, said the two scientists, is how one defines “minimal risk.” To calculate risk, researchers multiply the seriousness of a harm with the chance of that harm. So a sickness a hundred times worse than a few sniffles and muscle aches can still be “a minimal risk.” That is, if it’s a thousand-to-one shot, like dying in a traffic accident.

Not enough, say the authors. Institutional review boards and other authorities must tell researchers they may not enroll wards of the state unless:

1. They have a legitimate scientific reason to enroll wards of the state as opposed to children with the usual parents or guardians, or
2. The children in the study might directly benefit from the treatments they get during the study.

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Furthermore, they say, a court should appoint an independent advocate to represent the interests of wards of the state against the interests of the state itself, the researchers, and their grantors.

If these protections existed, we would not see the travesties of child protection involving Justina Pelletier, Isaiah Rider, and Kayla and Hannah Diegel. Even if they were wards of the state, they would have someone independent of the state to protect them. Furthermore, the researchers would have no scientific reason to enroll them as wards of the state.

But the National Institutes of Health do not protect wards of the state in this way. That’s why a Justina Pelletier, or an Isaiah Rider, or a Kayla Diegel or a Hannah Diegel, can find himself or herself made a ward of the state and turned into a lab rat.

And where is the Alliance for Human Research Protection? CNAV searched their web site, and found no mention of the cases of the four patients we name. They haven’t made the connection.

Obviously the NIH have learned from the ICC debacle. Never again will they risk a scandal by turning a home for sick children into a source of human lab rats. (Nor would that work out well in the case of rare diseases like those these four children suffer.) Instead they single out one or two children in a family, especially one with a rare disease. They then trump up charges of child medical neglect. Result: instant wards of the state. They then enroll them in their study, and maybe enroll them as controls. Controls get no treatment so researchers may know the “natural course” of the disease. Justina Pelletier almost died that way. Kayla and Hannah Diegel might also die if this medical kidnapping does not stop.

The civilized world rightly condemned Dr. Josef Mengele for his experiments on unwilling subjects at Konzentrationslager Auschwitz. CNAV is sure the curators of Yad VaShem never imagined anyone would do again what Dr. Mengele did, and to children, in a society supposed to be free. But it happened. Nor did it stop with the ICC scandal after it broke in 2004. Ten years later, this abuse of wards of the state goes on, but more subtly, hence harder to trace.

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