Strategies to build trustworthiness and increase diversity in colorectal cancer biospecimen research: a multi-phase, multi-site qualitative study.
Publication Title
J Community Genet
Document Type
Article
Publication Date
1-2-2026
Keywords
oregon; prn; diversity
Abstract
BACKGROUND: Black, Latino, and American Indian individuals are underrepresented in biospecimen research. Obtaining biospecimens from these populations is particularly relevant for understanding, preventing, and treating colorectal cancer and translating those insights to eliminate persistent racial and ethnic inequities in colorectal cancer. The aim of this qualitative study was to identify information needs and culturally appropriate approaches to biorepository recruitment among Black, Latino, and American Indian patients and community members.
METHODS: We used a multi-phase, multi-site design that included key informant interviews and focus groups with patients and community members in Los Angeles, Boston, and South Dakota. We analyzed interview data using rapid qualitative analysis and focus group data using reflexive thematic analysis.
RESULTS: We interviewed 10 keys informants with expertise in the recruitment of racially and ethnically diverse participants into biospecimen research and facilitated 21 focus groups with a 101 patients and community members who identified as Black, Latino, or American Indian. We generated six themes from our analyses that we organized into a best practices framework for building trustworthiness and increasing diversity in biospecimen research: (1) cultural responsiveness and inclusivity; (2) community-based partnerships; (3) convenience and accessibility; (4) meaningful and compelling purpose; (5) mindful incentives; and (6) trusted messengers and information sharing.
DISCUSSION: Our findings provide insight into the factors that influence Black, Latino, and American Indian individuals' decisions to participate in biorepositories. The best practices framework developed from this study presents actionable strategies researchers can adopt to build trustworthiness and increase diversity in colorectal cancer biospecimen research.
Area of Special Interest
Cancer
Area of Special Interest
Digestive Health
Specialty/Research Institute
Oncology
Specialty/Research Institute
Gastroenterology
Specialty/Research Institute
Population Health
DOI
10.1007/s12687-025-00855-7
