Beyond Cancer Risk: Cancer Genetic Counselors’ Views on Fertility Preservation Discussions with Hereditary Breast and Ovarian Cancer Patients

Angelina Santini

Co-Presenters: Individual Presentation

College: College of Health Professions and Human Services

Major: MS.GENTICOUNSLNG

Faculty Research Mentor: Pervola, Josie  

Abstract:

Background: Individuals diagnosed with or at risk for hereditary breast and ovarian cancer (HBOC) syndromes face increased infertility risk following guideline-based management strategies such as salpingo-oophorectomy (BSO), chemotherapy, and chemoprevention. Despite these risks, the extent to which fertility preservation (FP) is discussed in HBOC genetic counseling remains unclear, particularly regarding timing, frequency, and counselor comfort and preparedness. Methods: From September to December 2025, cancer genetic counselors practicing in the United States were recruited to complete a cross-sectional electronic mixed-methods survey. The survey assessed demographics, frequency of FP discussions, perceived counselor comfort and experience, and open-ended qualitative questions. Quantitative data were analyzed using descriptive statistics, paired t-tests, and Spearman correlations; qualitative responses were evaluated through thematic analysis. Results: Among 79 respondents, mean Likert scores indicated somewhat low comfort discussing FP with patients (mean = 2.54) and somewhat agreed that additional training is needed (mean = 2.03). Respondents also agreed that more guidance from professional organizations on timing and indications for FP discussions would be beneficial (mean = 1.92). A small but statistically significant negative association showed that those reporting greater need for training also reported higher comfort discussing FP (Spearman rho = −0.25, p = 0.025), suggesting that increased engagement or awareness may be linked to greater comfort. Qualitative analysis identified key barriers, including limited knowledge of FP options, perceptions that FP counseling falls outside the genetic counselor’s scope, and insufficient guidance from clinical practice guidelines. Conclusion: These findings highlight a gap in clinical practice among cancer genetic counselors regarding FP discussions with reproductive-age patients at risk for HBOC syndromes. These results underscore the need for clearer professional guidelines, targeted education, and improved interdisciplinary collaboration to support proactive and consistent FP counseling in hereditary cancer care. Future research should incorporate perspectives from other oncology providers and patient-reported experiences to evaluate alignment between current practices and patient needs.Keywords: Fertility preservation, cryopreservation, hereditary breast and ovarian cancer, genetic counseling