Human Experimentation in 20th-Century American Medical Science: Myths and Reality
Jon Erlen, University of Pittsburgh School of Medicine, 11 April 1997

Myths and realities surrounding the ethics of three controversial experiments involving human subjects.

Tuskegee Syphilis Study

Myth: Purpose was to study syphilis in the African-American population.
Reality: Study was actually designed to study the natural course of the disease. A simultaneous study at Johns-Hopkins did study differences between symptoms of the disease in Caucasians and African Americans.

Myth: Experimenters infected subjects in order to study the disease.
Reality: Experimenters had no need to infect subjects. Tuskegee chosen precisely because of high natural incidence of the disease -- roughly 40 percent of adult male population.

Myth: Subjects were not told they had syphilis, but "bad blood."
Reality: True, but "bad blood" was the local vernacular for syphilis. The subjects knew what was meant by the term.

Myth: Experimenters withheld effective treatment in 1932.
Reality: Subjects diagnosed with primary syphilis were removed from the study and referred to treatment. Only subjects with secondary or tertiary syphilis, for which there was no known cure in 1932, were admitted to the study.

Myth: Penicillin would have cured subjects from 1946-1948.
Reality: By 1946 all the men in the study had had the disease for at least 20 years and had developed tertiary syphilis. Even today, penicillin does not cure tertiary syphilis.

Reality: The study broke state and federal law by not reporting persons infected with syphilis to the authorities and by blocking men in the study from being drafted into World War II.

Reality: Experimenters lied about the purpose of the experiment, informing subjects that they were being treated.

Reality: Subjects coerced into participation with free meals, burial payments, etc.

Reality: Experimenters made no effort to prevent men known to be infected from spreading the disease.

Reality: Experimenters had no consistent long-term plan.

Salk Polio Vaccine Experiment

Myth: Success of the vaccine justifies the means

Myth: The mentally handicapped can be sacrificed for the sake of scientific knowledge

Myth: Pharmaceutical companies can be trusted to maintain standards even if it cuts into profits

Myth: Federal government has no responsibility to promote public health by involving itself in the production and distribution of vaccines

Reality: Exclusive use of mentally ill children as subjects

Reality: Lack of informed consent in national study

Reality: Failure of private laboratories to maintain standards. In 1955 Cutter lab puts out faulty vaccine and causes 2,600 cases of polio and 11 deaths. This demonstrates need for greater federal involvement in production and distribution of vaccines.

Willowbrook Hepatitis Experiment

Reality: Uninfected mentally ill children given viral hepatitis in order to study the course of the disease.

Myth: The disease was rampant in the Willowbrook School; the children would have gotten it anyway. Besides, informed consent was given.

Myth: Ends justify the means

Myth: Consent is always informed consent

Myth: It is appropriate to place the mentally ill at risk for potential scientific benefit

Myth: Institutional oversight is always reliable

Reality: Faulty techniques in eliciting informed consent

Reality: No institutional oversight

Conclusion

Human experimentation is necessary for the advance of science, but we need to take great care to balance the potential rewards with potential harm. No subject should ever participate in such research without being fully informed of the procedure and the potential risks involved.

 

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(http://www.ohiou.edu/edu/ethics/history/erlen97.html) updated 1999 Nov 09
by Kathleen Evans-Romaine (ethics@ohio.edu)