Abstract PO1-09-06: Patient Barriers to Genetic Counseling
Authors: Karen Dirrigl, Lora Hebert, Lisa WintonLi, Michelle Taylor, Albert G. Wendt
Journal: Cancer Research (2024)

Abstract Patient Barriers to Genetic Counseling Background: Access to genetic counseling is becoming more important as new targeted drugs are developed and as recommendations for testing for hereditary cancer syndromes expands. Yet, significant barriers hinder patients’ access to these services leading to a certain percentage of patients declining a genetic counseling referral (Ochoa, O’Neill). Among one of the more often cited reasons for declining genetic counseling is the cost of the consultation when it is not covered by insurance or a patient is uninsured. This potentially limits patient treatment options and can result in a missed opportunity to identify at-risk relatives. There is scant data documenting why women do not accept genetic counseling referrals and our study sought to better identify these potential barriers. In doing so we hope to enable healthcare providers and policymakers to develop strategies to ensure equitable access to these crucial services. Methods: Breast cancer patients for whom a genetic counseling referral was placed and who self-declared the inability to pay our Cancer Center’s genetic counseling fee ($126) were approached about filling out an anonymous survey regarding their reasons for declining. The survey queried, in addition to cost, other patient-related barriers to genetic testing. The survey also captured the number of first-degree relatives who might be affected by an actionable pathogenic variant. After patients were consented and completed the survey, genetic testing, paid for by the study, was offered. Results: To date, 13 patients were approached about the study and 10 patients (77%) agreed to participate, were consented and filled out surveys. Women could choose more than one reason for declining a genetic counseling referral but the most prevalent reasons cited were cost (10), worried there is nothing to be done about inherited cancers (3), concern about genetic material being taken and/or results being used against them (2), too many appointments (2). Of these 10, all (100%) elected to proceed with genetic counseling and all 10 (100%) elected to proceed with genetic testing. Two of the 10 patients (20%) tested were found to have actionable pathogenic variants (one in BRCA2 and one in CHEK2) potentially impacting 13 adult first-degree relatives. Conclusion: These preliminary findings underscore the importance of access to genetic counseling in order to facilitate appropriate genetic testing. The identification of actionable genetic mutations allows for early detection, timely interventions, and tailored management plans, ultimately leading to improved patient outcomes. By identifying cost as the most often cited reason for declining genetic counseling, healthcare providers and policymakers can develop strategies such as the implementation of financial assistance programs and universal insurance coverage for genetic counseling services in order to alleviate the financial burden and ensure equitable access to these crucial services. References 1. O'Neill SM, Peters JA, Vogel VG, Feingold E, Rubinstein WS. Referral to cancer genetic counseling: Are there stages of readiness? Am J Med Genet C Semin Med Genet. 2006;142C(4):221-231. doi: 10.1002/ajmg.c.30109. 2. Ochoa D, Jean-Louis C, Stephenson K, Woods M, Kelsey J, Henry-Tillman R. What happens after referral? completion rates of genetic counseling evaluations in breast cancer patients. J Natl Med Assoc. 2022;114(1):90-93. doi: 10.1016/j.jnma.2021.12.006. Citation Format: Karen Dirrigl, Lora Hebert, Lisa WintonLi, Michelle Taylor, Albert G. Wendt. Patient Barriers to Genetic Counseling [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO1-09-06.