AP/San Francisco Chronicle Examines Debate Over Role of Tuskegee Syphilis Study in Blacks’ Clinical Trial Participation
The AP/San Francisco Chronicle on Sunday examined a debate among researchers over whether the Tuskegee Syphilis Study "remains a significant factor in turning black people away from clinical trials at a greater rate than white people."
The government-backed Tuskegee Syphilis Study, which ended in 1972, tracked the effects of untreated syphilis in mostly poor and uneducated black men over 40 years. The study enlisted 600 black men, 399 of whom had syphilis, in exchange for free medical exams, meals and burial insurance. The men were denied treatment and were not informed they had the infection. By the time the study was exposed to the public, 28 participants had died from the infection, 100 others had died of related complications, and at least 40 spouses and 19 children were also infected.
Studies measuring how the Tuskegee study affects clinical trial participation among blacks show conflicting results. A Johns Hopkins University study released in January indicates that blacks were more reluctant than whites to participate in clinical trials "because they fear being improperly used as guinea pigs," according to the AP/Chronicle. The study concluded that the lack of participation by blacks inhibits the development of treatments for diseases that disproportionately affect the black population. A 2005 study by the university found that few blacks knew about the Tuskegee study at all and that even fewer knew accurate details. An NIH survey, also released in 2005, found that blacks are as willing as whites to volunteer for clinical studies but are less likely to be asked to participate.
According to the AP/Chronicle, "Despite the different findings, researchers involved in the studies, along with others who work on minority medical issues," maintain that "more needs to be done to make sure black people have proper access to clinical trials as well as medical care."
Thomas LaVeist, co-author of the 2005 Johns Hopkins study and director of Johns Hopkins Bloomberg School of Public Health's Center for Health Disparities Solutions, said that while the Tuskegee study likely plays a small role in blacks' lack of participation in clinical trials, other factors -- such as poorer quality of care, longer wait times, failure to secure appointments with doctors and an overall unequal treatment of care -- are more probable causes. "Of course, we cannot undo a historical event," he said, adding that "to place so much emphasis on Tuskegee is to divert attention away from possible causes and solutions that could possibly be effective today."
However, Neil Powe, a professor at Johns Hopkins' School of Medicine and lead author of the most recent Hopkins study, said, "So long as the legacy of Tuskegee persists, African-Americans will be left out of important findings about the latest treatments for diseases," adding, "There is enormous irony that without African-American subject participation in clinical trials, we are not going to have tested the best therapies we need to treat African-Americans."
Mona Fouad, director of the University of Alabama-Birmingham Minority Health and Research Center, said there are multiple reasons for blacks' low participation in clinical trials, including economic barriers, lack of time to participate in trials, negative personal experiences in the medical system, and complex paperwork and consent forms. Fouad said researchers need to develop more culturally competent recruitment strategies to reach out to blacks (Thomas, AP/San Francisco Chronicle, 3/16).