Barriers and motivators for BRCA genetic testing in Japan

TL;DR

This study explores why people in Japan choose or avoid BRCA genetic testing, finding that cost was a major barrier before insurance coverage expanded in 2020.

Contribution

The study identifies non-medical barriers and motivators for BRCA testing in Japan, particularly the impact of insurance coverage and counseling timing.

Findings

Insurance coverage significantly increased the number of patients undergoing BRCA testing.

Cost-related concerns decreased after insurance coverage, showing it was a key structural barrier.

The main motivator for testing was to determine the surgical technique, and counseling timing was important.

Abstract

In Japan, insurance coverage for BRCA genetic testing was expanded in 2020. The reasons individuals undergo or decline testing remain unclear; however, cost has been identified as a key factor. Herein, we investigated barriers and motivators for undergoing testing. The subjects were 1025 individuals who received genetic counseling at our institution between April 2014 and March 2024. We included 647 patients and 82 blood relatives. We compared the number of patients undergoing tests before and after insurance coverage to evaluate costs. Patients were classified as tested or not tested. Clinical backgrounds and reasons for undergoing or declining testing were compared retrospectively using medical and counseling records. We found that 485 patients underwent testing. There was a significant increase in the number of patients who underwent testing in the 4 years after coverage (n = 376) compared with the 6 years before insurance coverage (n = 109; p < 0.001). Furthermore, there were significant differences in insurance/self‐pay, treatment status (preoperative/during treatment), and age at first counseling. The main reasons for declining testing were “Discuss options with relatives” (28%) and “Focused on current treatment” (14.3%). Cost‐related concerns markedly decreased after insurance coverage, suggesting cost had been an important structural barrier. Motivators for testing included “Determine the surgical technique” (42.7%) and “For my health care” (22.3%). The blood relative testing rate was high at 91% (75/82). In addition to our finding that cost had been an important barrier to testing, we identified several other non‐medical barriers. In Japan, the selection of candidates for testing and clinical indications are determined according to Japanese HBOC clinical guidelines. We identified determination of the surgical technique as the main motivator, as well as the timing of counseling being important. Understanding barriers and motivators could help clients who need testing.

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