Misinformation and misbeliefs in the Tuskegee Study of Untreated Syphilis fuel mistrust in the healthcare system.

Abstract

The Tuskegee Study of Untreated Syphilis (TSUS) is an important issue in research, healthcare, ethics and race relations. The assumed consequences of knowledge of this study on the African-American community include mistrust of the healthcare system. In the July 2005 issue of the Journal of the National Medical Association, Brandon, Isaac and LaVeist (the authors), who were at the Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, reported the results of black-white differences in awareness of and knowledge about the TSUS and the effect of that awareness and knowledge on medical mistrust. The study surveyed blacks, whites and others in the Baltimore, MD community about their knowledge of and attitudes about the TSUS. The respondents who were aware of the TSUS were asked survey items to assess specific factual information about the TSUS. The respondents who were not aware of the TSUS were read a brief description of the TSUS taken from the CDC website. Both groups were asked if a similar study was possible today. The authors performed a regression analysis of mistrust of medical care based on race, knowledge of the TSUS and demographic variables. The editorial identified and explained challenges in the article, i.e., challenges in calculations, demographic analysis by race, knowledge of TSUS, cultural sensitivity and methodology. The authors miscalculated the "similar proportions" of blacks and whites who were aware of the TSUS; the recalculated proportions, favoring whites, were different than reported by others. There was no demographic analysis by race in their article--also different than other published reports. Most respondents--blacks and whites--who were aware of the TSUS at baseline answered incorrectly the author-selected questions about the TSUS, particularly the fact-based question of whether the TSUS researchers gave syphilis to the men-not dissimilar to one other report. The source for TSUS information (the CDC website) that was used to educate respondents who were not aware of the TSUS at baseline had contradictions, errors and challenges in black history, medical and public health history, and women's studies. The content of what was actually read to respondents was unknown. Proportionally more whites who were not aware of the TSUS but who were read author-selected information about the TSUS believed that a similar study could happen today-a belief and possibly mistrust of medical care that appeared to be induced-compared to whites with prestudy awareness of the TSUS but not read information from the CDC website. Both black groups were not dissimilar from each other. The authors used a survey that measured a race difference in response to a medical event (TSUS) specific to only one racial group (blacks) when there were inclusive examples specific to other groups available. The authors used "Tuskegee" as a single-word sound bite for the TSUS--a misuse that was inappropriate in scientific and research discourse and that may fuel mistrust of medical care. Whether knowledge of the TSUS was a predictor of mistrust of the healthcare system was inconclusive based on the results in the authors' article. The core findings of the article made believing their case difficult. The editorial suggested that bias and misinformation in undertaking, analysis and reporting the study may in itself fuel mistrust in medical care in the community. Because of these challenges, the editorial urged caution with regard to any change in research direction or policy debate based on the results reported in the article.