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The New York Times reports on a disturbing suggestion from the National Academy of Sciences and the Institute of Medicine that urges the government to allow testing of pharmaceuticals on prisoners. The idea is hardly new, but that is part of the problem. The practice came to a screeching halt in the mid-70s as abuses came to light:
Until the early 1970’s, about 90 percent of all pharmaceutical products were tested on prison inmates, federal officials say. But such research diminished sharply in 1974 after revelations of abuse at prisons like Holmesburg here, where inmates were paid hundreds of dollars a month to test items as varied as dandruff treatments and dioxin, and where they were exposed to radioactive, hallucinogenic and carcinogenic chemicals.
In addition to addressing the abuses at Holmesburg, the regulations were a reaction to revelations in 1972 surrounding what the government called the Tuskegee Study of Untreated Syphilis in the Negro Male, which was begun in the 1930’s and lasted 40 years. In it, several hundred mostly illiterate men with syphilis in rural Alabama were left untreated, even after a cure was discovered, so that researchers could study the disease.
“What happened at Holmesburg was just as gruesome as Tuskegee, but at Holmesburg it happened smack dab in the middle of a major city, not in some backwoods in Alabama,” said Allen M. Hornblum, an urban studies professor at Temple University and the author of “Acres of Skin,” a 1998 book about the Holmesburg research. “It just goes to show how prisons are truly distinct institutions where the walls don’t just serve to keep inmates in, they also serve to keep public eyes out.”
Critics also doubt the merits of pharmaceutical testing on prisoners who often lack basic health care.
The Tuskegee experiment, which was the subject of an excellent HBO movie, actually was the opposite problem: they withheld medicine for people who needed it. It shows how the medical establishment put the value of their experiments over the value of the humans involved. And unlike this proposal, it did not involve prisoners, but rather poor and mostly illiterate sharecroppers in Alabama. The doctors never even told the subjects about their disease, but instead told them they had "bad blood" and disguised their experiments as free medical treatment, while watching them go through the horrific final stages of syphilis without ever trying to save them. In fact, they acted on several occasions to keep them from getting proper medical treatment elsewhere.
Human trials for experimental treatments need to meet the highest ethical standards. Using prisoners for this purpose puts too much power into the hands of the researchers and the prison authorities. No one will be able to say that the convicts had an opportunity to make an informed decision, or to have the opportunity to simply withdraw, without facing pressure from wardens and guards to continue. At least one has to recognize the potential for those dynamics to leave prisoners vulnerable to that kind of abuse.
That's why it is so surprising to read that an ACLU-affiliated attorney endorsing the proposal. Alvin Bronstein founded the National Prison Project, supported by the ACLU, and he doesn't see anything wrong with the proposal. Putting enough safeguards in place would prevent abuse, Bronstein claims, and the interests of medical research outweighs the concerns. That's a new way to look at prison reform, hardly one endorsed by the NPP. As I recall, they were pretty skeptical about the idea that societal needs outweighed prisoner rights.
When free people volunteer for these experiments, they have the ability to gather their own information, unfettered by the government and the researchers. They can make informed decisions about their participation and treatment, and can opt out at any time. Prisoners cannot just stroll down to the local library or surf the Internet to gain the knowledge necessary for truly independent decisions, nor do they have the freedom of their persons to simply walk away from the researchers. This is a bad idea, and I'm shocked that the medical community would propose it.
UPDATE: The HBO movie was Miss Evers' Boys, starring Alfre Woodard and Laurence Fishburne.Sphere It View blog reactions
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