The Impact of the Tuskegee Syphilis Study

By Jennifer Brooks, reprinted from Closing the Gap, a newsletter of the Office of Minority Health

Though not a clinical trial, the Tuskegee Syphilis Study has put research in a bad light for many Americans, especially minority populations. Conducted by the US Public Health Service (PHS) from 1932 to 1972, the study intentionally withheld treatment for 399 poor African American men suffering from syphilis. The men were sharecroppers and laborers from Macon County, Alabama.

The goal of the comparative study was to observe the long-term effects of syphilis. Penicillin was not in use as a standard treatment for syphilis in the 1930's. However, it became widely available in the 1940's and later became a standard treatment for syphilis. The participants were never made aware of or given the treatment. Over three-fourths of the subjects eventually died from complications of syphilis. Many of those who survived became blind and crippled.

The experiment was conducted without the benefit of patients' informed consent. In exchange for their participation, the men received physical examinations, free rides to and from the clinic, free hot lunches, and free medicine for any disease other than syphilis.

The study was finally terminated only after a former PHS employee leaked information on the study to an Associated Press reporter. The press ran lead stories exposing the study on July 26th, 1972. At the time the story broke, only 74 study participants were alive.

"What happened at Tuskegee was terrible," said NIH's Dorothy Cirelli. "There's no getting away from it. But since then, we have put safeguards in place to prevent this from happening again."

Minorities are underrepresented in clinical trials for a number of reasons, one being the mistrust that stems from memories of Tuskegee. But today, complete information on the nature of research studies is available to prospective participants, said Cirelli.

Other barriers deal with the culture and the language. Many Hispanics, for example, feel more comfortable with Hispanic health care providers and researchers, said Dinora Dominguez, a patient recruitment specialist at NIH. "They at least want to work with professionals who have an understanding or appreciation of their culture." Cirelli said.

According to Dominguez, transportation is another obstacle because patients must come to the NIH research hospital for office visits.

NIH conducts research on a cross-section of common and serious diseases, and is interested in developing treatment for them. "Minorities who are disproportionately affected by many diseases, should especially consider participating in clinical trials," Dominguez said. In order to make progress in medicine, "we need representation from all groups."