Ernest Hendon, the last survivor of the notorious Tuskegee Experiment, died in Alabama last month at 96. His death should close a shameful chapter in American medicine. Tragically, however, the legacy of the experiment, in which hundreds of black men with syphilis were surreptitiously left untreated in order to study the progress of the disease, is still very much with us.
In the first place, the experiment has generated a lingering mythology. Perhaps the most harmful myth is that the subjects were actually given the disease. This is utterly false. But a recent survey conducted in Alabama and Connecticut by researchers from six major American universities revealed that 75 percent of African-American respondents had heard of the Tuskegee Study, and a full 60 percent of these believed that the men had been intentionally infected with syphilis. According to Dr. Stephen Thomas, Director of the University of Pittsburgh’s Center for Minority Health, such beliefs are “still shaping the attitudes of African Americans towards the health care system and AIDS in particular,” including the conspiracy theory that AIDS is “a man-made weapon of racial warfare.” Thomas argues that these notions may in turn deter African Americans from getting necessary medical care.
It’s an especially poignant phenomenon since the experiment itself, seen in the context of its own time — the study lasted from 1932 through 1972 — doesn’t look quite as reprehensible as it usually appears to us. Clearly, the fact that all the test subjects were black men and none were informed of their condition points to an underlying racism. Yet, according to Dr. Richard Shweder, Professor of Human Development at the University of Chicago, there’s more to the story. He notes that syphilis attacks the body in stages, but after the initial stages, “the vast majority of people who have untreated syphilis either remain asymptomatic all of their lives or else spontaneously recover from the disease.” It was only men in the later non-contagious stages who were the intended subjects of the experiment. Indeed, of the 410 syphilitics in the original test population, 178 were provided with standard treatments and dismissed from the study.
Furthermore, Shweder points out, the treatments available in the 1930s were themselves hazardous — the most common being multiple doses of neoarsphenamine, an arsenic-based drug. The side effects included pain, convulsions, and even death, and the therapy entailed extended confinement in a hospital. Nor did such treatments work in a majority of cases. Penicillin, the first effective cure for syphilis, wasn’t purified and tested until the late 1940s. “Circa 1932,” Shweder concludes, “a reasonable, fully informed public health researcher who cared about the welfare of all human beings– black and white–might well have supported the Tuskegee syphilis study.”
Certainly, this does not exonerate the Tuskegee researchers. It remains true that, in a minority of instances, syphilis does indeed attack the heart and nervous system and can cause death. Thus, the fact that none of the subjects were provided penicillin even after it became widely available is damning. The $9 million settlement won by the Tuskegee victims and their families in a 1972 lawsuit seems rather paltry, and the public apology delivered by President Clinton in 1997 to the eight survivors, 25 years after the experiment came to light, seems too long in coming.
But it’s time to separate myth from reality in the matter of the Tuskegee Experiment. And, as we observe Black History Month, it’s time to acknowledge what is perhaps the most uncomfortable truth of all — which is how very eager we’ve become to imagine the very worst when it comes to America’s flawed racial past.