The Role of Race and Trust in Tissue/Blood Donation for Genetic Research

• Authors: Jada Bussey-Jones, Emory University; Joanne Garrett, University of North Carolina; Gail Henderson, University of North Carolina; Mairead Moloney, University of North Carolina; Connie Blumenthal, University of North Carolina; Giselle Corbie-Smith, University of North Carolina
• Journal Title: Genetics in Medicine
• Volume: Volume 12, Number 2
• Publisher: Nature Publishing Group: Open Access Hybrid Model Option B | 2010-02, Pages 116-121
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1097/GIM.0b013e3181cd6689
• Subjects: Biology, Genetics
• Keywords: Trust; Research Participation; Biologic samples; Genetics

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.