Abstract 2269: Factors associated with declining to participate in cancer genetic and genomic studies among Hispanic/Latine patients with colorectal cancer: findings from a Cancer MoonshotSMproject
Authors: Diego I. Alvarez-Lopez, Joel Sanchez Mendez, Jessica Sanchez, Fibi Berhane, Carmen Chavez, Lucia Enriquez, Vernon S. Pankratz, Andrew L. Sussman, Ursa A. Brown-Glaberman, Stephanie Solomon Cargill, Heinz-Josef Lenz, John Carpten, Shiraz Mishra, Mariana Stern
Journal: Cancer Research (2025)

Abstract Introduction: Colorectal cancer (CRC) is the third leading cause of cancer-related mortality among Hispanic/Latine (H/L) men and women in the United States (US), yet H/L patients are underrepresented in cancer genetic/genomic studies. As part of the Cancer MoonshotSM initiative, the Center for Optimizing Engagement of Hispanic Colorectal Cancer Patients in Cancer Genomic Characterization Studies (COPECC) launched the ENLACE study. This study engages H/L patients with CRC to characterize germline genetics and tumor somatic mutations and gathers information on participation determinants. We examined factors influencing the decision to decline participation in cancer genetic/genomic research. Methods: We compared characteristics of patients with CRC diagnosed between February 2014 and November 2024 who accepted to participate in the ENLACE study to those who declined and wanted no further contact. We descriptively summarized sociodemographic characteristics and made between-group comparisons using Student’s t-tests for continuous variables and Fisher’s exact tests for categorical variables. An open-ended question was included to capture reasons for declining participation, which were analyzed using inductive thematic analysis. To further explore these barriers, we initiated a scoping review on reasons for declining participation in cancer genetics/genomic studies in the US. We deployed a piloted search strategy across MEDLINE (PubMed), Embase (Ovid), and Scopus and have identified 12, 726 peer-reviewed references in English (MEDLINE: 5, 970; Embase: 1, 657; Scopus: 5, 099). Independent reviewers will assess full texts for inclusion, and findings will be summarized numerically and narratively. Results: We included data from 249 patients in the analysis; 40 (16.1%) had declined to participate. Decliners were, on average, 5 years older than participants (p&amp;lt;0.05), less likely to be Catholic (52.5% vs. 71.8%; p&amp;lt;0.05), and more likely to be Christian (40.0% vs. 19.1%; p&amp;lt;0.05). The proportion of patients diagnosed with stage 3 or 4 CRC was similar (decliners = 45.0% vs. participants = 47.1%; p=0.86). The three most common reasons for declining were: 1) lack of energy due to treatment; 2) prior genetic testing; and 3) concerns about adding further stress to their health situation. Conclusions: Despite the high burden of CRC among the H/L population, participation in cancer genetic/genomic studies remains low. Our findings highlight factors influencing engagement and offer insights for culturally tailored strategies to enhance participation in cancer research. Clarifying to patients that the testing offered by ENLACE is more comprehensive than prior genetic testing (e.g., standard commercial testing) could address this specific reason for declining participation and improve engagement in the study. Citation Format: Diego I. Alvarez-Lopez, Joel Sanchez Mendez, Jessica Sanchez, Fibi Berhane, Carmen Chavez, Lucia Enriquez, Vernon S. Pankratz, Andrew L. Sussman, Ursa A. Brown-Glaberman, Stephanie Solomon Cargill, Heinz-Josef Lenz, John Carpten, Shiraz Mishra, Mariana Stern. Factors associated with declining to participate in cancer genetic and genomic studies among Hispanic/Latine patients with colorectal cancer: findings from a Cancer MoonshotSMproject [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2025; Part 1 (Regular Abstracts); 2025 Apr 25-30; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2025;85(8_Suppl_1):Abstract nr 2269.