Knowledge of Tuskegee Study Doesn’t Increase Medical Mistrust

Few Had Heard of Tuskegee and Fewer Knew Accurate Facts

Knowledge of the Tuskegee Study of Untreated Syphilis in the Negro Male (Tuskegee Study) does not increase distrust in medical care, according to researchers from the Johns Hopkins Bloomberg School of Public Health. Most of those surveyed were unaware of the Tuskegee Study and, of those who had heard of it, most could not accurately answer multiple-choice questions about the study. The researchers also found that African-Americans were significantly more likely than whites to be mistrustful of medical care. The study is published in the July 2005 issue of the Journal of the National Medical Association.

“No other study explicitly assessed the association between knowledge of the Tuskegee Study and mistrust of medical care among African-Americans or racial differences in this relationship. Our findings indicate that for African-Americans, other factors, such as negative interactions with the health care system, are more important to mistrust than the Tuskegee Study,” said Dwayne T. Brandon, PhD, lead author of the study and an assistant scientist with the Bloomberg School’s Department of Health Policy and Management.

The Tuskegee Study was carried out in Macon County, Alabama, from 1932 to 1972. U.S. Public Health Service researchers planned to record the natural history of syphilis. They withheld treatment from 600 poor, African-American men who had the disease, causing needless pain and suffering. The study participants were not told the purpose of the study, nor were they told if they were infected with syphilis.

The Hopkins researchers completed a telephone survey in the summer of 2003 of 277 African-American and 101 white adults, aged 18-93 years, living in Baltimore, Md. Only two-fifths of those interviewed had heard of the Tuskegee Study. Of those who had heard of it, most knew few details of the study. Almost half of both white and black respondents who had heard of the study thought the U.S. Army conducted it and 75 percent of blacks and 25 percent of whites thought the Tuskegee participants were given syphilis purposely. In fact, the U.S. Public Health Service researchers did not infect the men. Other inaccuracies included underestimation of the duration and size of the Tuskegee Study. For instance, 47 percent of blacks and 41.5 percent of whites believed the study was stopped in the 1950s, two decades earlier than its official end. A substantial number of black (28 percent) and just over half of white (51.2 percent) respondents believed that only 200 men were followed as part of the Tuskegee study.

Over 76 percent of black and 47 percent of white survey participants said they believed that a study similar to the Tuskegee Study could occur again today. Blacks who had heard of the Tuskegee Study were 120 percent more likely than their white counterparts to believe a similar study could occur today.

“Our findings illustrate that a tremendous amount of work needs to be done to repair the trust of African Americans with the medical system, which has direct implications for clinical trials and research,” said Lydia A. Isaac, coauthor of the study.

The Hopkins researchers also analyzed the relationship between race and mistrust of the medical care system. They found that black race was a consistent predictor of mistrust, even after adjusting for knowledge of the Tuskegee Study.

“Clearly, mistrust will complicate efforts to eliminate racial disparities in health, but the root causes of mistrust need to be addressed. We often assume that Tuskegee is central to understanding the high levels of mistrust often expressed by African Americans, but it seems that the sources of mistrust are deeper than any particular event,” said Thomas A. LaVeist, PhD, corresponding author of the study, director of the Bloomberg School’s Center for Health Disparities Solutions and professor in the Department of Health Policy and Management.

“The Legacy of Tuskegee and Trust in Medical Care: Is Tuskegee Responsible for Race Differences in Mistrust of Medical Care?” was supported by grants from the Agency for Healthcare Research and Quality and the Russell Sage Foundation.