Who declines genetic counseling? An assessment of genetic counseling declination among individuals participating in a population-wide genomic screening program.

Population-wide genomic screening (PWGS) programs can identify individuals at increased risk for Hereditary Breast and Ovarian Cancer (HBOC), Lynch Syndrome (LS), and Familial Hypercholesterolemia (FH).

However, uptake of follow-up genetic counseling (GC) remains inconsistent, and limited data describe why individuals decline these services.

This study aimed to characterize patterns of GC uptake and declination within a statewide PWGS program and understand participant-reported reasons for declining GC as documented by study staff. We analyzed GC uptake among 603 PWGS participants with pathogenic or likely pathogenic (P/LP) variants identified between November 2021 and November 2024 . Participants were categorized as completed GC, agreed but did not complete, and declined GC. Statistical analyses evaluated demographic predictors of engagement, and descriptive analysis characterized self-reported reasons for declination.

Overall, 60.4% completed GC, 27.7% declined, 11.9% agreed but did not complete GC. Decliners were more likely to have HBOC variants. Among those scheduling GC, participants with indication for FH were less likely-while those with indication for HBOC and LS more likely-to keep and attend their appointment. Common reasons for declining GC included prior knowledge (41.9%), lack of interest (13.2%), and perception that the condition was already managed (12.0%).

GC engagement after PWGS varies by condition type and by participants' perceptions of the relevance and added value of counseling. Even with no-cost virtual services, informational and motivational barriers contribute to non-engagement. Tailored education outlining the unique benefits of GC, particularly for individuals who believe they already understand their risk or feel their condition is adequately managed, may help improve engagement. Integrating GC into routine care pathways, enhancing provider reinforcement, and developing participant-centered communication strategies may improve uptake.

Addressing perceptual and motivational barriers is essential to strengthen follow-up after genomic screening and ensure individuals identified with actionable risk are fully supported in precision health care.