African American Participation in Cancer Genetics Research

Despite significant efforts, African Americans continue to experience excess rates of morbidity and mortality from all forms of cancer relative to individuals from other ethnic and racial groups. Research is now being conducted to the molecular basis of cancer through genetic-based studies and to translate this information into strategies for cancer detection, prevention, and treatment. African American reluctance to participate in cancer genetics research will significantly limit efforts to apply these approaches to address racial disparities in cancer outcomes. To develop effective strategies for recruiting African Americans to participate in cancer genetics research and to enhance decisions about participation in this population, empirical data are needed on attitudes and beliefs that act as barriers and facilitators to participation. Studies are also needed to determine how barriers and facilitators may interact with attributes of the study to influence participation within this population. To address these gaps in our knowledge, the specific aims of this mixed methods study are to (1) identify barriers and facilitators to African American participation in cancer genetics research and to translate this information into a psychometrically sound instrument; (2) evaluate within group variation in barriers and facilitators among African Americans based on sociodemographics, experiences with disease, and cultural beliefs and values; and (3) evaluate the associations between participation intentions and two potential influences that include the attributes of the study and barriers and facilitators. The study will be implemented in three Phases and will include African American men and women ages 18-75. In Phase I, we will use qualitative methods to identify barriers and facilitators to participate in cancer genetics research.

Phase II will consist of a cross-sectional survey to evaluate within group variation in participation barriers and facilitators based on sociodemographics, experiences with disease, and cultural beliefs and values. In Phase III, we will conduct a conjoint survey to evaluate the relative influence of participation barriers and facilitators and attributes of the study on willingness to enroll in cancer genetics research. To accomplish these goals, we have assembled a team of highly qualified investigators who are experts in the application of qualitative and quantitative methods to minority recruitment, cancer genetics, psychometrics, survey research, conjoint analysis. This study will provide empirical data that can be used to develop more effective strategies for recruiting African Americans to participate in cancer genetics research that enhance decisions about study participation.