Abstract
Purpose: Cancer epidemiology research often involves members of the public as “healthy controls.” Encouraging broad participation in cancer research is a key concern, particularly for research involving members of the general public who may have lower motivation to take part. Most work of individuals' decisions about study participation has focused on expected utility constructs, examining the benefits participants see to participating and the barriers that make participation less likely. Little attention has been paid to emotional decision‐making processes in this context. Such emotional processes (e.g., fear about procedures, anger about historical research misconduct) may guide decisions about participation. The purpose of this study was to examine the relation of cognitive and affective decision‐making factors to individuals' participation in a epidemiologic study involving both questionnaire completion and blood collection.
Method: Participants (N=46) were community adults in Niagara Falls, NY who were taking part in an educational program about cancer‐related research participation. Both prior to and following the educational program, we assessed participants' beliefs about the expected utility of participating in studies that involve questionnaire completion and studies that involve blood collection, the positive and negative feelings they associated with taking part in each type of study, and their willingness to take part in each type of study. Following the post‐program questionnaire, participants were offered the opportunity to take part in an epidemiological study in which they could complete a questionnaire, provide a blood sample, or do both.
Results: Both willingness to participate in studies and actual participation was primarily predicted by the feelings individuals associated with research, for both blood draw studies and questionnaire studies, those with more negative feelings about participation were less like to report willingness to take part in the study; questionnaire willingness B=−1.21, p<.05; blood willingness B=−0.97, p<.05. For blood draw studies, affective associations also predicted actual participation; B=−1.15, p<.05.
Discussion: The feelings individuals have about research participation played a central role in determining participation. Both research to better understand determinants of research participation and interventions to increase participation should consider affective factors.
Citation Information: Cancer Prev Res 2010;3(1 Suppl):B25.
RSS Feeds