Between the years of 1932 and 1972 the United States Government conducted a secret study into the effects of untreated syphilis in Macon County, Alabama, near the Tuskegee Institute1, after which the study was named. The subjects of this study were poor black sharecroppers, most of whom were illiterate2. The patients were chosen using a number of criteria: they weren't supposed to have been treated previously3, and they couldn't be too young, because the scientists intended to watch and see how long it would take their patients to die, and they didn't want to wait too long. None of the men were told what disease they had, or that treatment was being denied to them. They were induced into cooperating with the doctors by the promise of free medical care for unrelated sickness or injuries, free hot meals on the days they visited clinics, and a burial stipend for their families when the men inevitably died4. When the study was exposed to the press in 1972, the story aroused nationwide anger and disbelief, and generated discussion about bioethics and patients' rights.
The Study's Conception
When the project was first conceived, it was intended only to be a short-term study into the effects of syphilis left untreated for between six and eight weeks. Before the trial could be completed, and the men treated for the disease, the philanthropic Rosenwald Fund was forced to withdraw its funding. Rather than discontinue the experiment, Doctor Talioferro Clark instigated a new study, funded by the Public Health Service (PHS). This study was intended to observe the effects of syphilis on a group of approximately 400 black men. By withholding treatment indefinitely, the doctors involved in the study hoped to discover whether syphilis affected black men differently to how it affected white men. There was a theory that black men were more likely to get cardio-vascular complications from syphilis than neurological complications, though this turned out not to be the case5.
In the 1930s the treatment for syphilis involved 20 to 40 separate treatments of toxic drugs taken over a year or more. Each dose would cost between two and five dollars, making it prohibitively expensive for the poor sharecroppers, many of whom earned less than one dollar a day. Many doctors believed that the drugs offered 'more potential harm for the patient than potential benefit'. Withholding treatment could therefore be excused with the argument that the men would have been unable to pay for treatment had it been made available to them, and that the treatment might have been dangerous or ineffective. Less understandable was the use of deception and misrepresentation on the part of the government officials to ensure their patients' cooperation. When the subjects for the experiment were chosen in 1932, none were told that they were suffering from syphilis. The synonym 'bad blood' was used extensively to describe the illness, and men were also told that they were suffering from rheumatism or bad stomachs. The men were told that they would be receiving treatment for their various ailments, but instead they were given placebos, aspirin or iron supplements. These drugs relieved some of the pain but did not affect the syphilis.
In order to determine if any of the subjects were being affected by neurosyphilis6, Doctor Clark and his colleague Doctor Raymond Vonderlehr deliberately discussed bringing in the men and giving them painful diagnostic lumbar punctures, or spinal taps, under the guise that it was their 'last chance for special free treatment'. In the 1940s penicillin was found to successfully treat syphilis, but the surviving members of the study were still denied treatment. In 1941, 250 of the men were drafted, diagnosed with syphilis, and ordered to undergo treatment by the local draft board. One of the doctors involved in the study, Murray Smith, used a personal friendship with the head of the draft board to excuse the study's subjects from the draft7. Smith told Vonderlehr that 'so far, we are keeping the known positive patients from getting treatment'. The overt deception practised by the government officials damaged the public's perception of the Public Health System and the National Institute of Health.
When the story was made public in 1972, a great deal of attention was given to correspondence between the doctors involved in the study. The inherent racism of the men and the study reveals itself in exchanges such as the following: 'the Negro race is oftentimes more readily herded in than whites. This is not so much through interest in cure but simply due to the fact that they are more readily driven'. Many such instances of conscious or unconscious racism are evident in documentation concerning the Tuskegee experiment, although the doctors took pains to conceal the racist nature of the study when working with the black doctors of the Tuskegee Institute.
In 1972 the press paid particular attention to Eunice Rivers, a black nurse who had been with the study since its conception. Her role in the study excited considerable interest. Ironically, Nurse Rivers did not consider the Tuskegee study to be racist. She stated that the men gained as much benefit from the attention from doctors as they would have from 'a dose of medicine'. Nurse Rivers visited all the men involved in the study, took them to and from the clinic in her car, and was effectively the face of the study to the men involved.
The Study's Legacy
The history of bioethics can be directly linked to the Tuskegee study. After its exposure, the Tuskegee experiment led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which established parameters for the protection of patients' rights, including the necessity of informed consent. Two years after President Bill Clinton formally apologised to the survivors of the Tuskegee experiment in 1997, the nation's first bioethics centre was founded at the Tuskegee University. During the course of the study, many of the men's wives had been infected, and a number of children were born with congenital syphilis. After the experiment's exposure, the affected men and their families were given compensation and free medical care. Understandably, the men and their families chose their own medical professionals, as few of them trusted the government to cure them after the four decades of deception.