• IRB: ETHICS & HUMAN RESEARCH

Who’s Willing? Characteristics Associated with Willingness to Participate in Clinical Research

Clinical researchers struggle to meet subject recruitment goals, with one-third of studies underenrolled. Compounding this problem, ethnic and racial minorities are largely underrepresented in clinical research, limiting the ability of researchers to determine the effectiveness of treatments at the population level and for large subgroups of patients. Several theories have been proposed to explain overall and minority-specific underenrollment in clinical trials, yet no research has utilized a nationally representative sample of the public to determine what influences their willingness to participate in research. The first goal of our study was to identify the characteristics of survey respondents who said they would be willing to participate in research in order to understand the distribution of those characteristics across the population. The second goal was to understand the mediating factors for participants’ willingness to participate in research (risk, time, benefit to self or others, and hassle) and whether those factors vary according to respondents’ race, ethnicity, and socioeconomic status.We conducted a cross-sectional study with nationally representative survey data collected in 2011.

The participation rate among those invited to answer the survey was 60%; the study sample included 2150 participants. Overall, 47% of respondents reported willingness to participate in research. Non-Hispanic whites, individuals who were wealthier or more chronically ill compared to most respondents, and individuals who had participated previously in research were more likely to be willing to participate. The importance of risk and payment to respondents’ willingness to participate varied by income group, while the importance of pain and inconvenience to this willingness varied by race or ethnicity. We conclude that members of several minority groups who are historically underrepresented in medical research express willingness to participate in research. Better understanding of the role that inconvenience, payment, and pain have on minority participation could be useful in redesigning recruitment strategies.