Willingness to participate in biomedical research: African-americans vs whites

PURPOSE: The overall goals of this study were: 1) to determine whether (and if so, the extent to which) African-Americans differed in their willingness to participate in biomedical studies as compared to non-Hispanic Whites, and 2) to determine the influence that a range of demographic, psycho-social and medico-historical variables had on the comparative willingness of these groups to participate in biomedical research. This report will present preliminary findings on the first goal. METHODS: The Tuskegee Legacy Project (TLP) Questionnaire, a 60 item instrument developed within the Northeastern Minority Oral Health Research Center (a P50 Center supported by the National Institute of Dental and Craniofacial Research at NIH), was administered via a random-digit dial telephone interview by the University of Alabama at Birmingham Survey Research Unit to 840 adult African-Americans and Whites in three city/county areas: Birmingham/Jefferson Cty, AL; Hartford/Hartford Cty, CT and Tuskegee/Macon Cty, AL. RESULTS: The response rates were 70%, 65% and 49% for Birmingham, Tuskegee and Hartford, respectively. A lower percentage of African-Americans (21%) reported that they were either somewhat or very likely to participate as biomedical research subjects than did Whites (29%) (p < 0.0001). In response to 7 prompts on ‘whoʹ was conducting a study, African-Americans indicated they were less likely to participate than Whites on 4 specific prompts and more likely to participate on only 1 prompt (p < 0.006 for each). In response to 9 prompts on ‘whatʹ a study asked participants to do, African-Americans indicated they were less likely to participate than Whites on only 2 specific prompts (p < 0.001 for each), more likely to participate on 2 prompts (p < 0.001), and were equally or near equally likely to participate on 5 prompts. CONCLUSIONS: The findings from this study show that African-Americans self-reported a lower willingness to participate in biomedical studies than did non-Hispanic Whites, and that African-American subjects were more influenced by the factor of ‘whoʹ was running the study than by the factor of ‘whatʹ they might have to do as study subjects. Study supported by grant P 50 DE10592 from the NIDCR at NIH.