Willingness to participate as research subjects: Blacks vs Puerto Rican Hispanics vs. Whites

Purpose A major goal of this study was to determine whether (and if so, the extent to which) Blacks vs. Puerto Rican Hispanics vs. non-Hispanic Whites differed in their willingness to be biomedical research subjects. Methods The Research Subject Questionnaire (RSQ), a 60 item validated instrument was administered in 2003–2004 via random-digit dial (RDD) telephone interviews by ORC Macro to adults in three cities: New York, NY; Baltimore, MD; San Juan, PR. Results A total of 1,162 interviews were completed (30.6% Blacks, 26.9% Puerto Rican (PR) Hispanics, 42.4% Whites) with response rates of 52%, 51% and 44% for San Juan, Baltimore and NYC, respectively, with an overall completion rate of 82.6%. Less than 33% within each ethnic group (Blacks 28%, PR Hispanics 31%, Whites 33%) indicated that they were ‘likely’ (i.e., either ‘very likely’ or ‘somewhat likely’) to participate as a research subject in biomedical studies. Logistic regression analysis (adjusted for age, sex, education and income) revealed that Blacks self-reported a lower willingness to participate as research subjects than did Whites OR = 0.71 (95% CI 0.5–0.99) while PR Hispanics showed the same directional, albeit not statistically significant, trend as compared to Whites OR = 0.80 (95% CI 0.6–1.1). This finding for Blacks vs. Whites was identical to a prior observation which used the same exact questions in a prior RDD survey in 2000 of 840 adult Blacks and Whites in three city areas: Birmingham, AL; and Tuskegee, AL; and Hartford, CT., in which the OR was 0.7 (p < .05) for Blacks vs. Whites. Conclusion The findings from this study support the data from a previous study by this research team that: 1) a minority of only 30% of Whites and Blacks self-report a willingness to participate as research subjects, and 2) African-Americans self-reported a 29% lower willingness to participate in biomedical studies than did Whites. PR Hispanics also self-reported a 20% directional trend toward lower willingness to be a research subject than did Whites.