Willingness of minorities to participate in biomedical studies: confirmatory findings from a follow-up study using the Tuskegee Legacy Project Questionnaire

Abstract

Objectives: The purposes of this analysis were to compare the self-reported willingness of blacks, Puerto-Rican Hispanics and whites to participate as research subjects in biomedical studies, and to determine the reliability of the Tuskegee Legacy Project Questionnaire (TLP).

Methods: The TLP Questionnaire, initially used in a four-city study in 1999-2000, was administered in a follow-up study within a random-digit-dial telephone survey to a stratified random sample of adults in three different U.S. cities: Baltimore, MD; New York City; and San Juan, PR. The questionnaire, a 60-item instrument, contains two validated scales: the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale.

Results: Adjusting for age, sex, education, income and city, the LOP Scale was not statistically significantly different for the racial/ethnic groups (ANCOVA, p=87). The GPFF Scale was statistically significantly higher for blacks and Hispanics as compared to whites (adjusted ANCOVA, p<0.001).

Conclusions: The of the findings from the current three-city study, as well as from our prior four-city study, are remarkably similar and reinforce the conclusion that blacks and Hispanics self-report that, despite having a higher fear of participation, they are just as likely as whites to participate in biomedical research.