The role of race and trust in tissue/blood donation for genetic research

Abstract

Background Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to: 1) measure willingness to donate tissue/blood samples, 2) identify demographic, trust, and other factors associated with willingness to donate samples, and 3) measure willingness to participate in future genetic research. Methods We surveyed participants in the North Carolina Colorectal Cancer Study (NCCCS), which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation. Results African Americans were less likely to give a blood sample when compared to whites (21% vs. 13%, p<0.05). After controlling for “trust,” this difference was no longer statistically significant (17% vs. 13%, p=0.27). Those who had given samples were more likely to express willingness to participate in future research. Conclusion Despite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race, trust). Interventions to improve and demonstrate the trustworthiness of the research team as well as recruitment of subjects with a record of sample donation might enhance future study participation.

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

“…Likewise, our team, especially our NWP team, in combination with many other studies (Bates et al 2005;Bussey-Jones et al 2010;Corbie-Smith 1999;Furr 2002;Tambor et al 2002), continue to re-state the need for investigators' awareness regarding the challenge of overcoming the hesitation or refusal to participate in research and mistrust by African Americans and other minority groups. Reluctance to respond therefore makes the process of African American recruitment inherently different from the recruitment of White/European Americans.…”

“…The hesitation or refusal is based on a myriad of reasons not limited to the tragic history of the Tuskegee experiments (Corbie-Smith 1999) and impact of other research such as the more recent Henrietta Lacks example (Skloot 2010). Minority research participation in the USA is indirectly or directly impacted by the sociopolitical legacy of slavery, Jim Crow policies, and lingering perceptions and reality of racism and discrimination (Bussey-Jones et al 2010;Johnson et al 2011;Satia et al 2005). Part of the solution rests on the abilities of investigators and participants from diverse racial/ethnic backgrounds to understand and perceive the world through each other's worldviews and adapt recruitment strategies to reflect knowledge learned.…”

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).…”

Perceptions toward establishing a biobank and clinical data warehouse: Voices from the community

“…For example, in a 2007 study assessing the reasons why acute care patients with cardiovascular disease chose non-participation in Biobanks, results indicated that both age and certain minority demographic characteristics were associated with less likelihood of participation; with the main reason being wanting to avoid a blood draw [3] . Developers must also acknowledge the lack of trust by ethnic minority groups toward medical institutions [19,32] . Over the years, as more Biobanks have been created, the idea of community consultation has become a necessity as community consultation incorporates the ideas, concerns and needs of the patients into the development of Biobanks.…”