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Blacks and clinical trials

Manny Otiko | 5/8/2013, 5 p.m.

Common knowledge holds that African Americans are reluctant to take part in clinical trials for the pharmaceutical industry, and some say for good reason. Such horrific experiences as the Tuskegee Study of Untreated Syphilis in the Negro Male have made many African Americans wary of such testing.

The Tuskegee study was an infamous 40-year experiment carried out by officials from the U.S. Public Health Service from 1932 to 1972. It involved 600-some poor, mostly illiterate Black sharecroppers in Macon County, Ala., many in the late stages of syphilis. Three hundred ninety-nine of the men had the disease (201 were part of a control group), but were led to believe they were receiving treatment for "bad blood." They were never told they had syphilis and had no idea of the severity of their condition, for which there was no known cure. In reality, they were not being treated at all and there was never any intention by those leading the study of curing them. They were being used as human guinea pigs to observe what the long-term effects of the disease would be on Black males.

In the late stages, syphilis can damage the brain, nerves, eyes, heart, blood vessels, liver, bones, and joints. Symptoms include difficulty coordinating muscle movements, paralysis, numbness, gradual blindness, and dementia. This damage may be serious enough to cause death.

In return for their participation, the test subjects received free "healthcare," meals and burial services. U.S. Public Health Service officials also carried out similar experiments on human subjects in Guatemala.

On May 16, 1997, President Bill Clinton formally apologized for the experiment. "The United States government did something that was wrong--deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens . . . clearly racist."

Oddly, Black doctors and nurses were involved in the study, though not in control, and it was done on the campus of the famed Tuskegee Institute. The Black professionals also never revealed to the men what was going on.

By the time the experiment was concluded, 28 men had died from the disease, another 100 from related complications, 40 of their wives had been infected, and 19 children had been born with congenital syphilis. Penicillin became available as the standard treatment for disease before the end of World War II and more than two decades before the end of the study, but the men were deliberately denied the drug.

The last survivor of the experiment, Ernest Hendon, survived until 2004 and died at age 96.
"Among many African Americans, the idea of clinical drug trials invokes the Tuskegee Syphilis Study, in which poor Black men participated in a research study for 40 years without ever being told they had syphilis," wrote Tennessee State Rep. Antonio Parkinson in a guest editorial for the Memphis Commercial Appeal in 2012. "This atrocity led to additional infections and untreated cases of syphilis, and many of the participants died," Parkinson wrote. "That study, and the distrust it helped create, had a significant impact on the participation of African Americans in clinical drug trials in the 40 years since its end."