Blacks and other ethnic minorities have long been underrepresented in medical research studies, leading the National Institutes of Health to mandate their inclusion in all studies they fund. However, the ongoing distrust of blacks in medical research studies remains a barrier to their participation and is linked to their awareness of the U.S. government-sponsored Tuskegee Study of the natural history of syphilis among black men, according to a recent study.
Black men who had syphilis and participated in the Tuskegee Study, which began in 1932, were told that they were being treated, when in reality they received little or no treatment. This practice continued even after it was discovered that syphilis could be treated effectively with penicillin, notes Vickie L. Shavers, Ph.D., of Johns Hopkins University.
In a study supported in part by the Agency for Healthcare Research and Quality (HS09597), Dr. Shavers and her colleagues surveyed adults in Detroit in 1998 and 1999 about their knowledge of the Tuskegee Study and its impact on their willingness to participate in research studies. Overall, 81 percent of blacks and 28 percent of whites had prior knowledge of the Tuskegee Study. Over half (51 percent) of blacks said that their knowledge of the Tuskegee Study played a role in their reluctance to participate in clinical trials due to lack of trust in such trials; 48 percent reported that knowledge of the study had not changed their trust; and 1 percent reported that they had more trust in medical researchers.
Among white respondents who knew about the study, 17 percent said they had less trust in medical researchers as a result of the study, 83 percent had no change in their level of trust, and none had more trust. These findings confirm that distrust arising from knowledge of the Tuskegee Study negatively affects the willingness of many blacks to participate in medical research studies. To include more minorities in clinical studies, medical researchers should discuss past misuse of minority participants in research, their commitment to ethical research practices, and safeguards they are using to protect participants in their particular study.
See "Knowledge of the Tuskegee Study and its impact on the willingness to participate in medical research studies," by Dr. Shavers, Charles F. Lynch, and Leon F. Burmeister, in the December 2000 Journal of the National Medical Association 92(12), pp. 563-572.