By Mark Goldblatt on 2.10.04 @ 12:04AM
Separating myth from reality in the matter of the Tuskegee Experiment.
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.
topics:
Health Care, Law, Africa