Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

Abstract

Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including openended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p<0.001). Participants were Community Genet (2013) 4:469-482 DOI 10.1007 more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p<0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly lowincome, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

Impact of Informing Overweight Individuals about the Role of Genetics in Obesity: An Online Experimental Study

“…Finally, our finding that two thirds of these overweight individuals were interested in receiving personalized genetic information about their own and their children's obesity risk adds to the few previous studies that have found high levels of interest in genetic testing for obesity among clinical populations [63,64] , albeit at lower levels than for other diseases such as heart disease, type 2 diabetes, and cancer [65] . We speculate that perhaps the high level of interest in genetic testing for obesity risk observed in the present study is due to overweight people believing that if they obtain a 'high-risk' result from genetic testing for obesity risk, this could explain their struggles with weight.…”

Genetic research participation in a young adult community sample

“…However, providing an incentive decreased the odds of consenting to allow sharing with other NIH investigators, even when other factors associated with sharing were held constant. Perhaps, people willing to donate a sample without any kind of incentive are more altruistic and already open to granting permission to share (Sanderson et al 2013).…”

“…Unfortunately, research experience has found incongruence between the stated willingness to donate a biological sample and the actual participation rates in genetic research (Johnsson et al 2010). Studies around the world often find at least 80 % of people state that they are willing to donate biological material for research purposes (Wendler 2006;Sanderson et al 2013); however, the actual participation rates for genetic and biobank research can be closer to half of the rate of reported willingness (Johnsson et al 2010), although some efforts have had high actual participation (McQuillan et al 2003). In studies recruiting from general population or community samples, participation rates are lower when a consent form mentions the study of genes and DNA (Matsui et al 2005;McQuillan et al 2006;Melas et al 2010).…”

“…Concerns of trust become more prominent, as well as a need for more information regarding the purpose and mechanism for sharing genetic research data (Lemke et al 2010;Trinidad et al 2010); acceptability may be different for certain subpopulations, even if they are willing to donate DNA for specific analyses described in the consent form. Previous research has provided some empirical evidence on the willingness of research participants from general populations to consent to having their genetic material included in repositories for future research purposes, and important subgroup differences associated with the collection and storage of samples have been noted especially involving race/ethnicity (Chen et al 2005;Mezuk et al 2008;McQuillan et al 2003;Sanderson et al 2013). African Americans may have less trust in researchers with respect to how genetic information might be used (Sterling et al 2006) and young adults have also expressed a greater desire to want direct control over what data can be shared (Trinidad et al 2010).…”

Strategies for Enrollment of African Americans into Cancer Genetic Studies

“…The paucity of minority representation in biomedical research has fostered global, national, and local collaborations to identify major contributions and best practices to address this systemic problem [1–8]. Some of the salient reasons minority populations remain underrepresented in biomedical research include the following: the mistrust of the medical community [9, 10], misperceptions of biomedical research [11], employment of unsuccessful and inconsistent recruitment strategies [10], lack of awareness of studies for which minorities are eligible [12], and lack of research studies that incorporate non-invasive methods preferred by minority populations [6, 13]. As we learn more about the direct impact of biological and genetic contributions to health outcomes, it will be equally as important to focus on issues that inadvertently exacerbate disparities such as the underrepresentation of minorities in biomedical research.…”