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The Tuskegee Syphilis Experiment
The United States government did something that was wrong—deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens. . . . clearly racist.
—President Clinton's apology for the Tuskegee Syphilis Experiment to the eight remaining survivors, May 16, 1997
For forty years between 1932 and 1972, the U.S. Public Health Service (PHS) conducted an experiment on 399 black men in the late stages of syphilis. These men, for the most part illiterate sharecroppers from one of the poorest counties in Alabama, were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for “bad blood,”1 their doctors had no intention of curing them of syphilis at all. The data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of tertiary syphilis—which can include tumors, heart disease, paralysis, blindness, insanity, and death. “As I see it,” one of the doctors involved explained, “we have no further interest in these patients until they die.”
Using Human Beings as Laboratory Animals
The true nature of the experiment had to be kept from the subjects to ensure their cooperation. The sharecroppers' grossly disadvantaged lot in life made them easy to manipulate. Pleased at the prospect of free medical care—almost none of them had ever seen a doctor before—these unsophisticated and trusting men became the pawns in what James Jones, author of the excellent history on the subject, Bad Blood, identified as “the longest nontherapeutic experiment on human beings in medical history.”
The study was meant to discover how syphilis affected blacks as opposed to whites—the theory being that whites experienced more neurological complications from syphilis whereas blacks were more susceptible to cardiovascular damage. How this knowledge would have changed clinical treatment of syphilis is uncertain. Although the PHS touted the study as one of great scientific merit, from the outset its actual benefits were hazy. It took almost forty years before someone involved in the study took a hard and honest look at the end results, reporting that “nothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States.” When the experiment was brought to the attention of the media in 1972, news anchor Harry Reasoner described it as an experiment that “used human beings as laboratory animals in a long and inefficient study of how long it takes syphilis to kill someone.”
A Heavy Price in the Name of Bad Science
By the end of the experiment, 28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis. How had these men been induced to endure a fatal disease in the name of science? To persuade the community to support the experiment, one of the original doctors admitted it “was necessary to carry on this study under the guise of a demonstration and provide treatment.” At first, the men were prescribed the syphilis remedies of the day—bismuth, neoarsphenamine, and mercury—but in such small amounts that only 3 percent showed any improvement. These token doses of medicine were good public relations and did not interfere with the true aims of the study. Eventually, all syphilis treatment was replaced with “pink medicine”—aspirin. To ensure that the men would show up for a painful and potentially dangerous spinal tap, the PHS doctors misled them with a letter full of promotional hype: “Last Chance for Special Free Treatment.” The fact that autopsies would eventually be required was also concealed. As a doctor explained, “If the colored population becomes aware that accepting free hospital care means a post-mortem, every darky will leave Macon County . . .” Even the Surgeon General of the United States participated in enticing the men to remain in the experiment, sending them certificates of appreciation after 25 years in the study.
Following Doctors' Orders
It takes little imagination to ascribe racist attitudes to the white government officials who ran the experiment, but what can one make of the numerous African Americans who collaborated with them? The experiment's name comes from the Tuskegee Institute, the black university founded by Booker T. Washington. Its affiliated hospital lent the PHS its medical facilities for the study, and other predominantly black institutions as well as local black doctors also participated. A black nurse, Eunice Rivers, was a central figure in the experiment for most of its forty years. The promise of recognition by a prestigious government agency may have obscured the troubling aspects of the study for some. A Tuskegee doctor, for example, praised “the educational advantages offered our interns and nurses as well as the added standing it will give the hospital.” Nurse Rivers explained her role as one of passive obedience: “we were taught that we never diagnosed, we never prescribed; we followed the doctor's instructions!” It is clear that the men in the experiment trusted her and that she sincerely cared about their well-being, but her unquestioning submission to authority eclipsed her moral judgment. Even after the experiment was exposed to public scrutiny, she genuinely felt nothing ethical had been amiss.
One of the most chilling aspects of the experiment was how zealously the PHS kept these men from receiving treatment. When several nationwide campaigns to eradicate venereal disease came to Macon County, the men were prevented from participating. Even when penicillin was discovered in the 1940s—the first real cure for syphilis—the Tuskegee men were deliberately denied the medication. During World War II, 250 of the men registered for the draft and were consequently ordered to get treatment for syphilis, only to have the PHS exempt them. Pleased at their success, the PHS representative announced: “So far, we are keeping the known positive patients from getting treatment.” The experiment continued in spite of the Henderson Act (1943), a public health law requiring testing and treatment for venereal disease, and in spite of the World Health Organization's Declaration of Helsinki (1964), which specified that “informed consent” was needed for experiment involving human beings.
Blowing the Whistle
The story finally broke in the Washington Star on July 25, 1972, in an article by Jean Heller of the Associated Press. Her source was Peter Buxtun, a former PHS venereal disease interviewer and one of the few whistle blowers over the years. The PHS, however, remained unrepentant, claiming the men had been “volunteers” and “were always happy to see the doctors,” and an Alabama state health officer who had been involved claimed “somebody is trying to make a mountain out of a molehill.”
Under the glare of publicity, the government ended their experiment, and for the first time provided the men with effective medical treatment for syphilis. Fred Gray, a lawyer who had previously defended Rosa Parks and Martin Luther King, filed a class action suit that provided a $10 million out-of-court settlement for the men and their families. Gray, however, named only whites and white organizations in the suit, portraying Tuskegee as a black and white case when it was in fact more complex than that—black doctors and institutions had been involved from beginning to end.
The PHS did not accept the media's comparison of Tuskegee with the appalling experiments performed by Nazi doctors on their Jewish victims during World War II. Yet in addition to the medical and racist parallels, the PHS offered the same morally bankrupt defense offered at the Nuremberg trials: they claimed they were just carrying out orders, mere cogs in the wheel of the PHS bureaucracy, exempt from personal responsibility.
The study's other justification—for the greater good of science—is equally spurious. Scientific protocol had been shoddy from the start. Since the men had in fact received some medication for syphilis in the beginning of the study, however inadequate, it thereby corrupted the outcome of a study of “untreated syphilis.”
In 1990, a survey found that 10 percent of African Americans believed that the U.S. government created AIDS as a plot to exterminate blacks, and another 20 percent could not rule out the possibility that this might be true. As preposterous and paranoid as this may sound, at one time the Tuskegee experiment must have seemed equally farfetched. Who could imagine the government, all the way up to the Surgeon General of the United States, deliberately allowing a group of its citizens to die from a terrible disease for the sake of an ill-conceived experiment? In light of this and many other shameful episodes in our history, African Americans' widespread mistrust of the government and white society in general should not be a surprise to anyone. —BB
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http://www.infoplease.com/ipa/A0762136.html
No one asked but this is the story of the Tuskegee experiment |