Willingness to participate in various nontherapeutic cancer research activities among urban and rural African American and Latinx healthy volunteers

Purpose Inclusion of racial/ethnic minorities in cancer research can reduce disparities in health outcomes; however, data regarding barriers and motivators to participation are sparse. This study assessed African American (AA) and Latinx healthy volunteers' perspectives regarding willingness to participate in noninvasive and invasive research activities. Methods Using a 38-item questionnaire adapted from the Tuskegee Legacy Project Questionnaire, we assessed willingness to participate in 12 research activities, offering 27 possible barriers and 14 motivators. The sample was segmented into four subgroups by AA/Latinx and rural/urban. Results Across five states and Puerto Rico, 533 participants completed questionnaires. Overall, participants were more willing to participate in noninvasive versus invasive procedures, although, all subgroups were willing to participate in research if asked. Rural AA were most willing to complete a survey or saliva sample, while rural Latinx were least willing. Urban AA were least willing to provide cheek swab, while rural counterparts were most willing. Self-benefit and benefit to others were among the top three motivators for all subgroups. Curiosity was a primary motivator for urban AA while obtaining health information motivated rural Latinx. Primary barriers included fears of side effects and being experimented on, lack of information, and lack of confidentiality. Conclusions Latinx and AAs are willing to participate in the continuum of nontherapeutic research activities suggesting their lack of participation may be related to not being asked. Inclusive enrollment may be achieved by assessing needs of participants during the design phase of a study in order to reduce barriers to participation.

Automated summary

This study assessed the willingness of African American and Latinx healthy volunteers to participate in noninvasive and invasive research activities, as well as the barriers and motivators influencing their participation. The results showed that all subgroups were willing to participate in research if asked, with rural African Americans showing the highest willingness for certain activities. Self-benefit and benefit to others were identified as primary motivators, while fears of side effects, lack of information, and lack of confidentiality were identified as barriers.