As national efforts are implemented to understand the genetic basis of cancer, access to banked human tissues that represent a cross section of the population will continue to be emphasized (Shaw and Patterson, 2011
). But, previous research has shown that African Americans may be unwilling to participate in resources that are established to support this type of research (Moorman et al.
). The present study adds several new findings to the growing body of literature on African American participation in cancer genetics research that may involve biobanks. First, we found that cultural factors had significant independent associations with intentions to donate a blood or saliva sample. Specifically, respondents who had greater levels of religiosity and present temporal orientation had a lower likelihood of being willing to donate samples for cancer genetics research. Previous research has shown that religious frameworks are used to understand health and disease (Harris et al.
) and these frameworks also shape beliefs about genetics (Harris et al.
). For instance, in qualitative research with African Americans and whites, Harris et al.
) found that both African Americans and whites believe that God created genes and plays an active role in how genes are expressed. Some participants in this research also questioned the value of genetics research and whether these types of studies reflected efforts to “play God.” It could be that individuals with greater religious values are less likely to be willing to donate samples because of these types of beliefs.
Temporal orientation, or beliefs about specific domains of time (e.g., past, present, and future), is one of the primary contexts through which individuals understand and give meaning to their experiences (Strathman and Joireman, 2005
). Present temporal orientation reflects a focus on immediate or short-term consequences (McGrath, 1988
); previous research has shown that greater present temporal orientation is negatively associated with knowledge about breast cancer and utilization of mammography among African American women (Lukwago et al.
). A possible explanation for the negative association between present temporal orientation and donation intentions in our study is that respondents who focus more on short-term or immediate consequences may see less value in studies that have distal health implications. Biobanks, in particular, are established to support research over long periods of time and may not yield scientifically meaningful results for several years. Respondents with higher levels of present temporal orientation may give greater priority to things that are happening in their lives right now.
Overall, donation intentions were high among respondents in the present study. Importantly, donation intentions in our sample were consistent with those that have been reported in other research (Henderson et al.
). This could be because of continued racial disparities that exist in cancer morbidity and mortality among African Americans (American Cancer Society, 2009
) and concerns about this disease. In a recent study with random digit survey study with a community-based sample of African Americans (Weathers et al.
), cancer was identified as a top health priority. High levels of donation intentions could have positive implications for recruiting African Americans into genetics research and efforts to establish biobanks (Haga and Beskow, 2008
). But, previous research has shown that this is not the case (Lerman et al.
; Moorman et al.
). Future studies should determine whether the intentions reported in our study translate into similar levels of donation to biobanks and participation in other types of cancer genetics research.
We found that respondents who usually receive health care at places such as a community health clinic or public facility were about five times more likely to be willing to donate a sample. In a review of minority recruitment for hereditary breast cancer research, Hughes et al.
) found that hospital-based resources such as billing records and tumor registries are often used to recruit participants for studies. To our knowledge, empirical data are not available on the number of times that individuals are approached about participating in studies as part of their clinical care, but patient registries are frequently used to recruit subjects into many different types of research (Anton-Culver et al.
; Heger, 2011
; Lainka et al.
). It could be that being solicited for study participation multiple times reinforces distrust in researchers that has been found among African Americans in primary care settings (Corbie-Smith et al.
), especially if patients are not aware that their information is being provided to investigators for study recruitment. Only 38% of cancer patients enrolled in a state registry remembered receiving an educational brochure that described the process through which their personal information may be shared with researchers for study recruitment (Beskow et al.
). Although recruitment for cancer genetics research in settings in which patients are receiving emergency or acute medical care is neither advisable nor feasible, future studies should evaluate the effects of recruitment efforts for cancer genetics research in public health clinics or community health centers. Our experiences in the present study suggest that resources at an academic health center may have several important limitations. Close to one-third of all patients who were identified from our billing records could not be reached because their telephone was disconnected or no longer in service. Additional research is needed to determine if participation differs according to whether or not potential subjects are recruited at academic health centers or public health clinics and community health centers.
When considering the results of the present study, some limitations should be noted. First, we were not able to reach a sizeable number of individuals who were invited to participate in the study and we recruited our sample from a single health care system. These aspects of our study may limit the generalizability of our results, especially since African Americans who are not patients at an academic health care system may have a different level of donation intentions. But, according to the 2000 Census, our sample was similar to Philadelphia residents in terms of most sociodemographic characteristics. Nevertheless, future studies should evaluate donation intentions in national samples of African Americans who have more diverse usual sources of health care. Another possible limitation is that our outcome variable was hypothetical in nature. Yet, our previous research suggests that these measures may be reliable proxies for actual behavior among African Americans (Kessler et al.
; Halbert et al.
; Bussey-Jones et al.
). Additional research is needed to determine whether donation intentions translate into similar levels of actual participation. The cross-sectional nature of our study is an additional limitation that should be considered.
Despite these potential limitations, our results have several important implications for African American recruitment in cancer genetics research and biobanks. First, it may be important to include places other than doctors' offices as recruitment sites for these efforts. This may be easier said than done because these facilities may have limited resources to support recruitment activities. It may also be important to address cultural factors as part of recruitment materials and strategies, regardless of the type of facility in which they are implemented. In doing so, we can learn from previous studies that have evaluated these types of approaches. For instance, recruitment materials that were designed to facilitate trust by increasing an individual's identification with study investigators and emphasized the importance of participation were not more effective in improving recruitment outcomes compared with standard materials among African Americans (Ashing-Giwa, 1999
; Satia et al.
). Resnicow et al.
) make an important distinction between surface cultural and deep cultural characteristics; while the former may increase the attractiveness and visual appeal of health materials, those that address deeper cultural factors, or beliefs and values may be more effective at promoting health behavior because they target issues that are fundamental to one's worldview. Recruitment materials and messages targeted to African Americans may need to address deep cultural factors related to religious and spiritual values and temporal orientation (Ashing-Giwa, 1999
; Lukwago et al.
; Kreuter and Wray, 2003
; Satia et al.