Mary Starke Harper told her audience that abuses like the Tuskegee experiment on unwitting African-American men can still happen today. She warned her audience to make sure they read and understand any medical consent forms they sign.

Nurse warns against repeating Tuskegee abuses

The last living health care provider associated with the infamous Tuskegee experiment, in which African-American men with syphilis went untreated, warns that the American public needs to remain alert to abuses in research practices. "I'm concerned that this is still going on," said Mary Starke Harper, who was a student nurse when the research was underway at the Tuskegee Institute in Alabama. She spoke of her experiences on Feb. 18 as part of the Black History Month commemoration at the School of Nursing. The "Tuskegee Study of Untreated Syphilis in the Negro Male" began in 1932 and ended in 1972, when a journalist wrote an article exposing the fact that the infected men were not receiving treatment for the disease. Harper, 82, said neither she nor the two nurses with whom she was working were aware of the nature of the research project. Named a "Living Legend" by the American Academy of Nursing, she is known nationally and internationally as a patient care advocate and has held numerous public policy posts in the federal government. The study by the U.S. Public Health Service was conducted ostensibly to document the degenerative effects of syphilis, which at the time was rampant in Macon County, Alabama, with the ultimate goal of appropriating state funding to treat rural blacks. However, what was intended to last six months to one year continued for 40 years, noted Harper. There were 600 African American men enrolled in the study at the Tuskegee Institute. They were induced by offers of free medical care, occasional hot meals, transportation to and from the study site, and burial benefits. Of the 600 men, 399 were diagnosed with syphilis. The infected men were not informed that they had the disease. Instead, they were told they had "bad blood" -- which at the time would have been interpreted as fatigue, anemia or indigestion, as well as a sexually transmitted disease. The men were denied access to treatment, even after penicillin came into use in 1947, and were discouraged from seeking treatment elsewhere. By the time the study was exposed in 1972, 28 men had died of syphilis, 100 others were dead of related complications, at least 40 wives had been infected and 19 children had contracted the disease at birth. In its advanced stages, syphilis damages the brain, nerves, eyes, heart, blood vessels, liver, bones and joints. One year after the details of the study were disclosed, a class action suit was filed and reparations totaling $10 million were made to more than 6,000 survivors and their families. In 1997, President Bill Clinton issued a public apology to survivors of the study. The Tuskegee study became a powerful symbol of racism in medicine, ethical misconduct in human research and government abuse of the vulnerable. It led to the promulgation of the National Research Act of 1974, which mandated that Institutional Review Boards approve all federally funded proposed research involving human subjects. Harper said there have been other versions of the abuses at Tuskegee -- citing as example studies in which civilians were exposed to radiation during nuclear testing and servicemen were administered hallucinogenic drugs, as well as the horrific experimentation conducted by Nazi doctors on concentration camp victims during World War II. She cautioned the standing-room-only audience to be careful about what they sign when undergoing medical procedures and to make sure they understand exactly what any consent form includes. "Read it and understand it," Harper urged. Harper also called for improved training of physicians and nurses -- training that more adequately addresses patients' needs. For instance, she said, the nation has the highest rate of suicide among men 65 and older; yet the health care system appears to be unresponsive to the problem. "There is a gap between how we are educating our health care workers and what patients need," she said. The event was sponsored by the School of Nursing Dean's Advisory Committee on Diversity and the Office of Research. 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