Early in the twentieth century, the medical community was practically helpless in its battle against syphilis. The crippling affliction was spreading at an alarming rate in certain areas, particularly among the poorer segments of the world population. Even for those who could afford medical care, the only known treatments rivaled the disease itself in the harm they did to sufferers.
In 1932, Dr. Taliaferro Clark from the United States Public Health Service (PHS) launched a study in Macon County, Alabama in order to document the progression of this troublesome sexually-transmitted disease. The region was home to hundreds of poor and mostly illiterate black farmers, and cases of syphilis had reached alarming proportions. The Tuskegee Syphilis Study was undertaken in the hopes that a deeper understanding of syphilis would provide new insights on potential treatments, and possibly justify a government-funded treatment program. But from these noble beginnings, a lack of funds and a shortage of ethics led to one of the most shameful clinical mishaps in US history.
Syphilis is caused by the bacterium Treponema pallidum, and it is among the more dangerous sexually-transmitted diseases due to the serious health problems which it can cause if left untreated. In its early phases it produces painless sores and rashes along with general feelings of discomfort such as headaches and sore throat. After about a year of such mild symptoms, many patients seem to return to normal health. This stage represents the disease’s latency phase, where the infecting bacteria lie in wait within their host for anywhere from a few months to several decades.
When the tertiary stage of syphilis finally strikes, the sufferer’s body will become plagued with a myriad of mysterious gummy tumors on various parts of the body, and serious damage may begin to occur to the heart, bones, and joints. The disease may also infect the nervous system, a type known as neurosyphilis. This variety can result in damage to the eyes and ears, personality changes, hyperactive reflexes, paralysis, and insanity. Some also believe that tertiary neurosyphilis can amplify creativity and intelligence, though there is little evidence to support such notions.
The Tuskegee Syphilis Study was launched in cooperation with the hospital at the Tuskegee Institute, a black university founded by Booker T. Washington. The PHS provided the residents with few details of the study’s purpose, but they offered a daily meal and free medical treatment to participants, as well as a $50 burial stipend for any who agreed to allow an autopsy in the event of their death. To the men who labored in the fields every day and paid rent on the land with a share of their crops, this offer was extremely appealing. Six hundred volunteers were accepted for the study, including 201 healthy men in the control group and 399 who tested positive for syphilis.
Since there were no funds available to provide useful medication to participants, the investigators could do little more than observe the natural progression of the disease. The researchers reasoned that as long as they did no harm to the patients, their study was justified by the knowledge it would produce for all of humankind. Almost immediately, however, these noble goals buckled under the weight of misguided research. The doctors opted not to disclose the seriousness of the affliction to volunteers, instead informing them that they required treatment for an ambiguous ailment they referred to as “bad blood.” Researchers then provided the volunteers with daily doses of aspirin and iron supplements which they misrepresented as more useful medication.
These deceptive practices prompted Dr. Taliaferro Clark to retire from the project shortly after the study began, but the remaining researchers continued. Under the care of nurse Eunice Rivers— an African American nurse who had trained at Tuskegee— blood samples were periodically taken from participants. They were also subjected to occasional spinal taps, a test where the the spinal column is punctured by a large needle to collect a sample of cerebrospinal fluid. This “golden needle treatment” offered no health benefits to the patients, in fact it often triggered severe headaches and nausea, and there was a small risk of disability or death. But the researchers deemed it necessary in order to test for indications of neurosyphilis. Patients received letters offering “special free treatment” to coax them into agreeing to the tests, and the procedure was usually administered for an entire region in one day in order to prevent word of its unpleasantness from discouraging participation.
Despite the occasional discomfort, patients were delighted to be receiving medical attention from the government. Many of the syphilis sufferers brought baked goods for the doctors as a way of showing their gratitude.
During the early years of the study, the medical community’s only weapons against syphilis were toxic cocktails laced with mercury or arsenic which were sometimes more harmful to the patient than the disease itself. Some creative practitioners had experimented with deliberately infecting patients with malaria to produce a prolonged fever that would sometimes kill the syphilis infection, following up with the anti-malaria tree-bark extract known as quinine. In the mid-1940s, however, the recently discovered antibiotic penicillin was determined to be a safe and effective cure for syphilis, and the US government sponsored a nationwide public health program in an effort to eradicate the disease.
The researchers at Tuskegee, in a bid to preserve the fruits of their labors, kept the cure a secret from their subjects. They also supplied local doctors with lists of the participants’ names, and instructed the physicians not to provide penicillin lest they interfere with a government health study. The administrators of the experiment were not interested in saving the lives of the black farmers, they were interested only in dissecting them on an autopsy table. As one of the doctors unceremoniously stated, “We have no further interest in these patients until they die.”
After the end of the Second World War, revulsion over the Nazis’ unnecessary human experiments prompted the Counsel for War Crimes to establish the Nuremberg Code. This set of principles defined the boundaries of human experimentation and established the requirement for informed consent. The Tuskegee study was clearly in direct contradiction with many of these guidelines, yet the experiments continued without interruption. For years the doctors in Macon County treated their patients with a regimen of placebos as the mens’ health degenerated under the ravages of untreated syphilis. The autopsies revealed a wide range of syphilis complications, including leaky heart valves, burst aortas, skeletal tumors, degenerated spinal cords, and brain damage.
In 1966, a venereal disease investigator named Peter Buxtun learned of the study and sent a letter to his department director expressing his moral concerns regarding the experiment. The US Center for Disease Control (CDC) responded by asserting that the study must continue until all of the patients had died, allowing the researchers the opportunity to autopsy all of the patients. This conclusion was supported by the National Medical Association and the American Medical Association. Nonetheless Buxtun continued his efforts to bring attention to the questionable ethics of the study, but his words failed to penetrate the tangled mass of bureaucracy and racism at the CDC.
On 25 July 1972, an article appeared in the Washington Star newspaper condemning the Tuskegee study and its practices. The article was written by Jean Heller in response to a letter sent by Peter Buxtun which outlined the travesties of the ongoing research. The newspaper’s readers were horrified to learn that the Public Health Service was deliberately preventing the test subjects from receiving treatment. The story appeared on the front page of the New York Times the following day. The government defended their long-term study, pointing out that the experiments were carried out on volunteers, and that the patients were always happy to see their doctors. But the weight of public disapproval crushed the feeble excuses, and an ad hoc advisory panel was assembled which quickly condemned the study and ordered its termination.
When the study ended, it had been forty years since the doctors administered their first placebo treatment for “bad blood” in Tuskegee. Over the course of the study, twenty-eight of the men had died of syphilis, and one hundred were dead due to related complications. Many of these patients died after penicillin had become readily available. Of the 399 original infected volunteers, only seventy-four survived to learn that their doctors had only been pretending to treat their disease for the past four decades. In addition, it was found that forty of the mens’ wives had been infected during the study, and nineteen of their children had been born with congenital syphilis.
The following year the National Association for the Advancement of Colored People (NAACP) won a $9 million settlement on behalf of the victims, and the sum was divided among the survivors. They and their families were also guaranteed free medical care for the rest of their lives. Understandably, the Tuskegee Syphilis Study motivated a deep distrust of the US medical establishment among African Americans, an effect which still lingers today.
Some have argued that the study is somewhat excusable when taken in historical context; for instance, when the study was launched in 1932, medical researchers were neither required nor expected to provide patients with details of their conditions. However a failure to disclose details was among the least of the researchers’ wrongdoings. Their deliberate exploitation of an ethnic minority was barbaric, and their proactive efforts to prevent treatment were profoundly indefensible, particularly after the cure became readily available in the mid-1940s.
On 16 May 1997, President Clinton apologized to the surviving Tuskegee patients on behalf of the nation:
“To the survivors, to the wives and family members, the children and the grandchildren, I say what you know: No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say, on behalf of the American people: what the United States government did was shameful. And I am sorry.”
Few of the researchers who participated in the study ever admitted to any lapse in ethics, most of them insisting that they were merely following the directions of their superiors. This hollow defense is eerily reminiscent of the explanation offered by the Nazi experimenters in Nuremberg, with whom the Tuskegee researchers have been compared unfavorably on many occasions. The Nazi scientists also claimed that they were “just following orders,” a condition which seems to disabuse ordinary people of their personal morals. Not even Eunice Rivers— the African American nurse who was a vital part of the study for its entire forty year span— felt that anything unethical had transpired.
The Tuskegee Syphilis Study is a blatant demonstration of racism run amok, and it is an event which can— and perhaps should— forever stain the history of science and medicine in the United States. Such stains remind us that government-mandated racism is not so distant in the past as some would like to believe, and that modern practitioners of science and medicine are not above shameful lapses in judgment.