The Tuskegee experiments are widely considered to be a low point in American scientific research. These experiments, in which the effects of syphilis were studied on a population of poor black men in the rural South, remain a major reference point in the history of medical ethics and forcing us to ask the question “how can we conduct medical research ethically?”
In 1932, a group of researchers with the United States Public Health Service (USPHS), in cooperation with the historically black Tuskegee University began a program to research syphilis. At the time, the principal treatment for syphilis was a mercury-bismuth regimen that only had a 30% cure rate and was accompanied by terrible side effects. To recruit for the study, a total of 600 men were told they would receive free medical treatment, meals, regular physicals, and burial insurance. Of these 399 had previously been infected with syphilis, and 201 hadn’t. Unbeknownst to the men in the survey, the researchers were not planning to cure them.
The first research papers written about the Tuskegee experiments came out in 1934, and by 1936, major papers were being published. These came under scrutiny of the medical community, but were lauded as excellent research into the long-term effects of syphilis. By the mid-1940s, antibiotics were an inexpensive, simple, widely available treatment, but studies continued without a treatment program. Intriguingly, at the same time, the USPHS in adjacent regions was promoting antibiotics for syphilis treatment and doing their best to make it widely available.
In 1966, a USPHS researcher in San Francisco named Peter Buxtun began inquiring into the ethics of the Tuskegee experiments. In 1968, William Carter Jenkins, a USPHS statistician, asked for an end to Tuskegee as part of a larger effort to end discrimination in the U.S. Department of Health, Education, and Welfare. In 1972, after six years of efforts to reform the USPHS from within, Buxtun leaked information about Tuskegee to the Washington Star. It was picked up by the New York Times the next day, and quickly became a topic of national import.
After the news broke, the Tuskegee experiments quickly ended. The experiments came under congressional scrutiny in 1973, and a class-action lawsuit was filed on behalf of Tuskegee test subjects and their families. In 1974, the suit was settled out of court and lifetime medical benefits were given to former Tuskegee subjects. The next year, wives, widows, and children of subjects were also given benefits. In 1997, President Bill Clinton delivered a public apology for the experiments, and established a center for bioethics at Tuskegee University.
However, for many, it was too late. Of the 399 syphilitic men who participated, 128 died of syphilis or related complications. Forty women married to Tuskegee test subjects were infected, and nineteen children were born with congenital syphilis.
On a broader scale, the social damage was already done. In the immediate post-Civil Rights era, marginalized black communities in the American South were beginning to emerge from decades of oppression. This led to widespread distrust of the government health institution. For decades afterwards, African-Americans remained reluctant to take part in organ donation programs, and the belief that the government introduced HIV as a form of ethnic cleansing remains a popular belief.
Numerous issues make this a particularly poorly carried out experiment from a bioethical perspective. Furthermore, there are larger-scale social issues at play.
The men who participated in the experiment were systematically lied to. All received no treatment when they were all told that they were receiving treatment. It’s standard practice for some individuals in placebo-controlled studies to receive a placebo instead of a medicine. This has in the past been controversial, and to remedy this, doctors now tell test subjects that they will either receive a treatment or a placebo. This lie was compounded by the fact that at no point were the men aware that they were being treated for syphilis, or that they had syphilis. Most were told they had “bad blood,” a folk term encompassing a wide variety of illnesses.
It should be noted that there was an awareness of the Tuskegee experiments in the medical community. As mentioned earlier, researchers at Tuskegee published their results as early as 1934. While there was some concern in some quarters about whether or not subjects were being treated, the prevailing positivist attitude in the medical community at the time valued the necessity of research over the rights of the subject.
Besides these specifically bioethical issues, we should consider who the individual subjects were. The demographic tested– poor, rural, Southern, black– was perhaps the most maltreated and oppressed sections of American society. Living conditions for African-Americans in Alabama in the ’30s were only marginally better than in the slave era. This poverty made them highly prone to manipulation, and the founders of the Tuskegee study preyed on their poverty by offering them meals and free medical treatment in exchange for their participation. To build trust between the medical institution and the subjects, a rotating team of black doctors and nurses administered the tests, manipulating the trust of the subjects’ in their fellow African-Americans at the height of the Civil Rights period.
- The Centers for Disease Control maintains a page devoted to the USPHS’ experiments.
- THE CDC also provides information about syphilis, a disease that, while mostly a thing of the past in the U.S., is making a comeback.
- A review of the literature on the Tuskegee study from a student at the University of California, Santa Barbara.
- The Presidential Commission for the Study of Bioethical Issues is the preeminent U.S. government research organization dedicated to the study of bioethics.
- The medical files of the Tuskegee subjects are in the public domain, and can be found here.
- Some argue that Tuskegee was part of a wider pattern. This interview on NPR discusses Harriet Washington’s book Medical Apartheid.
- Georgetown University hosts the Bioethics Research Library, a starting point for research in the field.