Understanding Participation by African Americans in Cancer Genetics Research

Abstract

Purpose Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research (CGR). Method We conducted a qualitative study with African American adults (n=91) to understand attitudes about participating in CGR and to identify factors that are considered when making a decision about participating in this type of research. Results Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in CGR. However, concerns about exploitation, distrust of researchers, and investigators’ motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision-making. Conclusion African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in CGR. These issues should be addressed as part of recruitment efforts.

Intentions to Donate to a Biobank in a National Sample of African Americans

“…Therefore, it extends results of qualitative studies that examined beliefs and attitudes about genomic research and biobanks in geographically homogenous samples and those from single academic institutions. 10,17,23 An additional strength of our study is that we used an established theoretical model as the framework for understanding behavioral intentions and developing study measures. 16 These innovative features of our study should be considered within the context of a limited response rate, despite sampling from both cellular and landlines.…”

“…Development of these instruments was guided by the Theory of Reasoned Action (TRA), the Theory of Planned Behavior (TPB), 16 and our formative research which found that African American men and women would consider the potential benefits to themselves, family members, and communities when making a decision to participate in cancer genetics research and that concerns about exploitation, distrust, and the investigator’s motives would be important to participation decisions. 17 According to the TRA, behavioral intentions are based in part on an individual’s attitudes about that behavior, or their beliefs about what positive and negative outcomes will happen as a result of performing that behavior. 16 This model posits that individuals make decisions to engage in behaviors based on their attitudes about the behavior; attitudes are based on one’s behavioral beliefs (e.g., if I participate in cancer genetics research, then I will get something beneficial in return) and their evaluation of the outcomes of performing the behavior (e.g., the extent to which individuals view getting something beneficial in return for study participation as being positive or negative).…”

“…16 This model posits that individuals make decisions to engage in behaviors based on their attitudes about the behavior; attitudes are based on one’s behavioral beliefs (e.g., if I participate in cancer genetics research, then I will get something beneficial in return) and their evaluation of the outcomes of performing the behavior (e.g., the extent to which individuals view getting something beneficial in return for study participation as being positive or negative). 16 Based on our qualitative study, 17 we developed items that evaluated attitudes about participating in cancer genetics research in terms of expectations about positive and negative outcomes from participating. These items were pilot tested using cognitive interviews with African American men and women through our previous research and had acceptable face validity.…”

“…Our previous research has shown that African Americans would consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. 17 We predicted that the likelihood of donating a biospecimen and clinical information to a biobank would be increased with greater expectations about positive outcomes of participating in genetics research and would be reduced with more negative expectations about participating in genetics research and distrust of researchers.…”

Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

“…Their specific mistrust of human genetics research is only more recently becoming apparent (Bonham et al 2009;Bussey-Jones et al 2010;McDonald et al 2012;Skinner et al 2008). What researchers have found is that African Americans tend to view genetic screening as eugenic in motivation and harmful to society (Beeson and Duster 2002), and compared to European Americans, they are less optimistic about genetic testing (Achter et al 2005).…”