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Tuskegee Syphilis Study

Tuskegee Syphilis Study

RACISM

PERSEVERANCE

SCIENTIFIC VALUE

A LESSON FOR RESEARCH ETHICS

BIBLIOGRAPHY

From 1932 to 1972, the U.S. Public Health Service (USPHS) sponsored an observational study of syphilis in black men in Macon County, Alabama. This trial has come to be known as the Tuskegee syphilis study. Six hundred black men, 399 with syphilis and 201 without, were observed for forty years to chart the effects of untreated syphilis. Perhaps the most famous example of unethical modern medical research in the United States, three features of the Tuskegee syphilis study are instructive: its racism, its perseverance, and its lack of scientific value.

RACISM

The racism of the Tuskegee syphilis study is evident in its design, its justification, and its implications. The misguided popularity of social Darwinism at the turn of the twentieth century is perhaps the most generous explanation available for the views expressed by Joseph Earle Moore (18921957), one of the nations leading venereologists, and Taliaferro Clark (18671948), chief of the USPHS Venereal Disease Division. Previously, Moore had argued for the treatment of syphilis to (1) diminish its effects on the patient and (2) limit its possible spread. In reviewing the design for the Tuskegee syphilis study, he suggested, surprisingly, that it would be a laudable study. Perhaps to mollify any concerns about the racist nature of the design, Moore suggested that syphilis in the black male would be an almost entirely different disease than syphilis in the white male. It is unclear why he made this claim, but even if it were true, it would not diminish the effects on the patient or eliminate the spread of the disease, primarily, of course, to other blacks. In the buildup to the syphilis study, Clark offered a more overtly racist justification for the experiment. He argued that the low intelligence of blacks meant that they would not seek treatment for syphilis. Observing, and not treating, was justified because these men would not choose to be treated anyway.

Offering dubious or overtly racist justifications, the Tuskegee syphilis study condemned these black men and their sexual partners to continual exposure to syphilis and its painful effects. The study also condemned Macon County, a primarily black county, to a robust population of syphilitic men and thereby guaranteed the continued presence and spread of the disease.

PERSEVERANCE

The Tuskegee syphilis study faced a number of obstacles and setbacks that could have easily ended the study. For starters, it was difficult to entice subjects to be tested and, once tested, to return for other exams. Ironically, the researchers successfully enticed subjects to enter the trial by offering them treatment. This, of course, is a surprising turn because (1) treatment was the very thing that the investigators had predicted the black population would not seek, and (2) it was a liethere was no plan to treat these men for syphilis.

The covert nature of the experiment precluded telling the men that getting treated elsewhere would be detrimental to the study. Accordingly, there was also a constant risk that these men would get treatment through other sources. To eliminate this possibility, the USPHS secured the agreements of local doctors, the Alabama Health Department, and the U.S. Army. Each group agreed to exclude subjects of the study from the antisyphilitic treatments they offered (or, in the case of the Army, required of) others. In the 1950s, penicillin became the standard treatment for syphilis. Though it cannot undo previous complications, penicillin does prevent the disease from producing further complications. By and large, though, subjects failed to procure adequate doses of penicillin during the course of the study.

This study was also under the purview of the Center for Disease Control and could have been cancelled at any given review point. In 1965 the study was reviewed, and the reviewers concluded that it should continue and that the race issue, if it were brought up at a later date, could be deflected.

SCIENTIFIC VALUE

The scientific value of the Tuskegee syphilis study was limited by its aim, its execution, and its origin. At the time the study was planned, there already existed some modestly effective treatments for syphilis. This, at the very least, raises serious questions about the value of an observational study. Without any clear benefits for the subjects or the possibility of promising scientific knowledge, the aim of the trial is unclear. That no improvement on existing diagnostic or treatment options was being pursued is further confirmed by the researchers response to the introduction of a highly effective treatment for syphilis (penicillin)they did all they could to keep the subjects from taking it.

During the execution of the trial, control subjects, who started the study without evidence of syphilitic infection, were transferred to the study group if, at a later date, they were positively diagnosed with syphilis. As any student of science can attest, transferring subjects from the control group to the study group is sure to muddy the results.

The origins of the Tuskegee syphilis study are as significant as any other limit on its ultimate scientific value. The planning of the study depended upon a particularly racist version of social Darwinism. Without critiquing this view, one can still note that the trial continued even after this view was no longer accepted in the scientific community. Designed around a problematic and ultimately untenable perspective, the results of the study lack any scientific or medical value.

A LESSON FOR RESEARCH ETHICS

In courses on medical ethics and research ethics around the country (and perhaps even further), the Tuskegee syphilis study, alongside the Nazi experiments during World War II (19391945) and the Willowbrook studies of hepatitis in mentally disabled children from 1956 to 1971, is used as an example of medical research gone wrong. The difference is that the Nazi experiments and the Willowbrook studies both produced useful knowledge (the Nazi experiments produced a wide array of knowledge about the physiological workings and limits of the human body, and the Willowbrook studies correctly identified the distinction and the possibility of inoculation for hepatitis A and B), while the syphilis study produced nothing of value. The Tuskegee syphilis study reminds us that medical research can use ethically impermissible methods to achieve many things, but medical research can also fail to accomplish anything more than an expression of the worst of our social views.

SEE ALSO Disease; Ethics in Experimentation; Ethno-epidemiological Methodology; Experiments, Human; Informed Consent; Racism

BIBLIOGRAPHY

Brandt, Allan M. 1978. Racism and Research: The Case of the Tuskegee Syphilis Study. Hastings Center Report 8 (6): 2129.

Jones, James H. 1993. Bad Blood: The Tuskegee Syphilis Experiment. Expanded ed. New York: Free Press.

Lombardo, Paul A., and Gregory M. Dorr. 2006. Eugenics, Medical Education, and the Public Health Service: Another Perspective on the Tuskegee Syphilis Experiment. Bulletin of Medical History 80: 291316.

Abraham P. Schwab

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"Tuskegee Syphilis Study." International Encyclopedia of the Social Sciences. . Encyclopedia.com. 22 Aug. 2017 <http://www.encyclopedia.com>.

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"Tuskegee Syphilis Study." International Encyclopedia of the Social Sciences. . Retrieved August 22, 2017 from Encyclopedia.com: http://www.encyclopedia.com/social-sciences/applied-and-social-sciences-magazines/tuskegee-syphilis-study

Tuskegee Syphilis Study

TUSKEGEE SYPHILIS STUDY

The Tuskegee Syphilis Study constituted one of the most shameful acts in the history of American medicine. The repercussions of this study, which allowed 400 African American men afflicted with syphilis to go untreated for a period of almost 40 years, are felt to this day. It resulted in new laws governing medical experiments on humans, and—some would argue—a legacy of suspicion of the medical community that continues among many African Americans.

The study began in 1932, at the hospital of the prestigious Tuskegee Institute, a traditionally African American college located in Alabama. The U.S. public health service sponsored it, and white physicians within the public health service administered it. The purpose of the study was to determine the effects of syphilis in African American men. At the time the study began, there was no cure for syphilis, a sexually-transmitted disease that causes sores and rashes in its early stages and serious blood vessel and heart problems, mental disorders, blindness, nerve system problems, and even death in its latter stages.

There were treatments for syphilis available when the study began, but it was decided to withhold even those from participants without their knowledge and chart the course of untreated syphilis in African American males. Four hundred men with syphilis were initially enrolled in the project, mostly poor uneducated African American tenant farmers from the surrounding area, along with 200 uninfected men who served as controls. The first published report of the study was issued in 1936, and reports were issued every four to six years after that.

In the late 1940s, penicillin first became available to the general public as a cure for syphilis. However, the decision was made not to make it available to study participants, who were allowed to continue in the study without any treatment for their disease. They were continually supplied with placebos, and no attempt was made to inform them of possible alternatives to the "medicine" that they were being given. As late as 1969 the Centers for Disease Control recommended the study continue.

Finally in 1972, following unflattering news reports, the study was finally shut down, and those subjects that were still part of the study received penicillin. A report was issued by the Department of Health, Education and Welfare that stated that the study was "scientifically unsound and its results are disproportionately meager composed with known risks to the human subjects involved." The U.S. Congress, led by Senator edward kennedy, held hearings in 1973 on the Tuskegee Syphilis Study.

Those hearings resulted in the 1974 passage of the National Research Act of 1974 (42 U.S.C. §§ 201 et seq) which established institutional review and an ethic guidance program for all future research studies done under the auspices of the U.S. government. It stated in part "that each entity which applies for a grant, contract, or cooperative agreement under this chapter for any project or program which involves the conduct of biomedical or behavioral research involving human subjects submit in or with its application for such grant, contract, or cooperative agreement assurances satisfactory to the Secretary that it has established a board (to be known as an Institutional Review Board) to review biomedical and behavioral research involving human subjects conducted at or supported by such entity in order to protect the rights of the human subjects of such research."

In the meantime, a lawsuit was filed in 1973, on behalf of the survivors of the study and the heirs and representatives of the participants who had since died, against the various federal government agencies, the State of Alabama, the private foundation that provided original funding, and individual physicians working for the U.S. Public Health Service. Eventually, a monetary settlement of $10 million was reached with the parties. Each surviving subject was to be paid $37,500, each heir or representative of a diseased subject received $15,000, each member of the control group received $16,000, and the heir or a representative of each control subject received $5,000.

In 1997, in a White House ceremony, President bill clinton apologized for the federal government's role in the Tuskegee Syphilis Study. He spoke of the mistrust and racial animus that resulted from the study to a group of survivors of the study and their families. He added: "We can look 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."

further readings

Herman, Donald H. J. 2000–01. "Lessons Taught by Miss Evers' Boys: The Inadequacy of Benevolence and the Need for Legal Protection of Human Subjects in Medical Research." Journal of Law and Health 15.

Jones, James H. 1993. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press.

Palmer, Larry I. 1997. "Paying for Suffering: The Problem of Human Experimentation." Maryland Law Review 56.

Reverby, Susan M., ed. 2000. Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill: Univ. of North Carolina Press.

cross-references

Patients' Rights.

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