Study Finds Lack of Protocols for Recontacting Genetic Testing Patients in Japan

While recontacting genetic testing patients to provide them with previously unavailable information regarding their results is common in Japan, the practice lacks formal guidelines. This, a new study in the Journal of Human Genetics finds, could create an unbalanced system of care. Following Japan's extension of national health insurance coverage to BRCA1/2 testing for the diagnosis of hereditary breast and ovarian cancer in at-risk people in 2020, the opportunities for clinics to recontact patients regarding test results were expected to increase. Yet there has been no formal examination into the recontacting process. But now researchers from Iwate Medical University interviewed 73 facilities accredited by the Japanese Organization of Hereditary Breast and Ovarian Cancer regarding their practice of recontacting patients about their BRCA1/2 test results. A total of 66 of the facilities said that they recontact patients, yet only 17 had protocols for doing so; in most cases, recontact decisions are left up to clinicians. Facilities also cited a number of barriers to implementing recontact including increased burden on too few medical personnel, unestablished systems, patient confusion, and the right not to know. "To reduce the burden of [making a recontact] decision and to help standardize the fair provision of services in Japan, it is considered necessary to establish recommendations and guidelines for recontact," the study's authors write. At the same time, "further continuation and deepening of the national discussion on recontact is urgently required, including the resolution of various issues, if recontact is to be recommended.