Case 7 Untreated Syphilis Mistreated Men

"Syphilis Victims in U.S. Study Went Untreated for 40 Years." That was the headline of a news story that broke nationwide on July 26, 1972. Six hundred poor African American farmers and sharecroppers from Tuskegee, Alabama, had been and still were subjects in a study run by the federal government to watch what happens when syphilis is left untreated. The study had been started in 1932. And, even when a safe and effective treatment for syphilis-the antibiotic penicillin-became widely available in the early 1940s, the men in the Tuskegee study remained 'subjects' and were actively prevented from receiving treatments for the disease.

Once the news was out, the study was officially halted. The next year (1973), lawyers brought a class action suit against the U.S. government on behalf of the subjects-those with and without syphilis-and their families and heirs. The suit was settled out of court in 1974. Since then, more than $10 million have been paid to those affected, about 6000 people.

But it was not until May 11, 1997, some 65 years after the start of the study, that President Clinton issued a formal apology to the victims and their families on behalf of the U.S. government. He spoke to several of the eight survivors (the survivors by then ranged in age from 87 to 109): "What the United States did was shameful, and I am sorry." The headline that day declared "Clinton Regrets 'Clearly Racist' U.S. Study."

In the study conducted in Tuskegee, 399 men with syphilis were followed along with 201 men of the same age who did not have syphilis. None of the men received any treatments at all. But they did submit to painful spinal taps, which many of them believed were treatments for what the researchers termed their 'bad blood.' None of the subjects knew that their 'bad blood' was actually syphilis. The incentives for submitting to the taps and other evaluations were warm meals, a free burial, and free medical care for other diseases, as long as the treatment was not penicillin. The researchers worked with the local draft board to prevent the subjects of the study from being drafted for World War II. Had they entered the army, the men would have been tested for syphilis and given penicillin if they had the disease.

Over the years, more than a dozen articles about the study were published in medical journals. One article from 1936 refers to the men in the study as "the material included in" the study. No one-no editor, no reviewer, no reader-ever raised a concern about the ethics of the study. But, in 1966, Peter Buxtun, a young college graduate who was working in San Francisco as a venereal disease investigator for the U.S. Public Health Service, learned of the study and began asking questions. Buxtun's concerns led to an investigation by the Centers for Disease Control, which concluded that the study should go on. Subsequently, Buxtun told a reporter about the Tuskegee study, and that was how the story eventually hit the headlines.

The Tuskegee study was designed as a "study-in-nature." The researchers were interested in watching the natural course of syphilis-how the disease progressed in untreated individuals. An earlier syphilis study-in-nature had been carried out in Norway between 1891 and 1910. That study followed 1978 people who had syphilis and who received no treatment; in those days, syphilis therapies were quite toxic, containing various forms and doses of the poison arsenic. When, in 1929, 473 of the Norwegian subjects were reevaluated, researchers found no recognizable signs and symptoms of the disease in 73% of those who had had syphilis for twenty years.

Objections to the design of the Tuskegee study and to the way the subjects were treated were many. Had this been a classic experiment instead of a study-in-nature, some of the men would have received treatments for syphilis while others would have gone untreated. The treatment options would have been penicillin, which came into use between 1941 and 1943, and salvarsan and neosalvarsan (arsenic with heavy metals), which were considered "magic bullets" against syphilis before the discovery of penicillin.

Had the researchers been honest with the subjects, the men would have known that their nonspecific health problems-fevers, rashes, swollen glands, circulatory problems, paralysis, blindness-were caused by syphilis, but no man was told the name of his disease. (Syphilis sometimes is called "the great imitator," because the same signs and symptoms occur in other diseases and are thus not distinctive.)

Had the researchers wanted, as some said, to study differences between how the disease progressed in African Americans and in white Americans, they would have set up a parallel study with white subjects.

Finally, had the researchers cared about the quality of the lives of the subjects, they would have stopped the study in the late 1940s and treated all those who were ill with penicillin.

The subjects in the Tuskegee study were seriously exploited and mistreated. The study forever altered the lives of the subjects and their families. It also left in the African American community a lasting deep-seated distrust of the federal medical establishment and of health care institutions and health care professionals.

Included References

New York Times, July 26, 1972, p.1,
Heller.
New York Times, May 17, 1997, P.
Mitchell.
Journal of the American Medical Association 1936, September 12, 856-860.

Additional Resources

Classic Cases in Medical Ethics, Gregory Pence, 3rd Edition, McGraw-Hill, Boston, 253-276, 2000
Bad Blood, James H. Jones, Free Press, New York, 1981.
Video: Miss Evers's Boys
Nova 1992 on Tuskegee.
Website: http://ori.dhhs.gov
Website: http://www.med.umich.edu/irbmed/FederalDocuments/hhs/
HHS45CFR46.html

Aims

Students should understand the following:

Difference in design between a study-in-nature and a standard experiment
Paternalism
Ethical responsibilities of medical researchers
Medical responsibilities of medical researchers
Past and current federal policies to protect human subjects
Legal recourse for abused human subjects of research
Whistleblowing to expose unethical activities
Transmission and natural history of syphilis
Treatment regimens for syphilis
Role of media in exposing Tuskegee story

Topics for Discussion/Written Assessment

What part did racism play in the Tuskegee study?
In 1972 on the day that the story about Tuskegee ran at the bottom of the front page of the New York Times, the lead story at the top of the page was about Senator Thomas Eagleton (who was running for vice president of the United States) and his past treatments for depression. The revelation destroyed Eagleton's political life. What stigmas surround mental illnesses, like depression? What stigmas are associated with venereal diseases? Why and how do these stigmas differ? In what ways have attitudes about mental illnesses and venereal diseases changed and stayed the same since 1972?
Some people argue that the Tuskegee experiment was not as harmful to subjects as generally believed. They point to the first study-in-nature, which suggests that, in some people, syphilis goes away without treatments. Would it be ethical today for researchers to conduct an experiment in which some people with syphilis would receive treatments and others would not?

Extension Questions for Further Investigation

What social and political attitudes left over from the Civil War may have influenced the researchers in Tuskegee?
Syphilis has been a problem in the military for some time. In 1900, one-fifth of the soldiers in the British army may have had the disease. How did the U.S. army respond to syphilis in World War I? How did the army respond in World War II?
Between 1900 and 1948, reformers in the United States conducted "syphilophobia" campaigns. The campaigns warned people against prostitutes and advocated clean sports instead. Two different groups were involved. One hoped to stop the spread of disease and the physical harm that it produced. The second focused on illicit behavior and morality, advocating "muscular Christianity." Compare and contrast the issues and goals of these two groups.
What organism causes syphilis? How is the disease spread? What are the stages of syphilis? What are the symptoms at each stage?
How dangerous and painful are spinal taps? How often do they lead to serious side effects? How often do they produce paralysis? Why are they done?
In 1972, the federal government began requiring that hospitals, clinics, universities, and researchers who conducted experiments with human subjects submit the plans for their experiments to an Institutional Review Board (IRB). No experiment could begin until the IRB evaluated its design, agreed that the potential benefits to subjects outweighed potential risks, and concluded that subjects would be able to understand what they were agreeing to by consenting to participate. What flaws might an IRB have found in the design of the Tuskegee study?
A 1967 book by Pappworth (Human Guinea Pigs) and a 1959 book by Beecher (Experimentation in Man) documented numerous violations of ethical principles and subjects' rights in a range of experimental studies. Find out about the studies described in these publications and the types of abuses the subjects endured.

Topics for Teacher Preparation

Medical, legal, ethical aspects of the syphilis study
Role of racism in the syphilis study
Lasting legacies of the syphilis study
Ethical responsibilities of researchers
Ethical responsbilities of journal editors, readers, and reviewers
Whistleblowing
Biology of syphilis
Treatments for syphilis