The process of explaining secondary findings in cancer genome panel testing, putting into consideration patient benefit

Abstract: This study aims to explore ways to improve the burden on medical professionals {oncologists, physicians, genetic specialists, hereditary tumour specialists, genetic counsellors} and the benefits for patients in the process of precision oncology genetic test and its secondary findings with a service management perspective. Since former US President Obama announced the Precision Medicine Initiative in his 2015 State of the Union address, the terms and concepts of precision medicine have rapidly gained ground in Japan. Cancer genome medicine is the field in which the implementation of precision medicine is most advanced. By comprehensive sequencing of the genetic mutations of cancer, it becomes possible to select specific treatments. However, hereditary pathological gene mutations may be found incidentally at a certain rate. This is called “secondary finding”. In June 2019, CGP (Comprehensive Cancer Genome Profiling) panel tests for terminal cancer patients were reimbursed by Japan's national health insurance system. 64,047 people have been examined by 31 October 2023 (National Cancer Center, 2024). According to a research by an oncologist: while the probability of reaching treatment was 3.6%, secondary findings were detected in 14.3% of cases. This high rate of secondary findings, even surpassing the rate of achieving the treatment goal, underscores the substantial burden of managing secondary findings (Inagaki et al., 2021). This highlights the urgent need for further research and potential interventions to address this issue. This article focuses on exploring the possibilities for supporting improvements in the process of explaining secondary findings. Ethnographic research: Interview and participant observation was conducted at a general medical institution, O University Hospital, and a cancer-specialized hospital, P Cancer Center, in 2023. An oncologist, a genetic specialist, two genetic counsellors at O University Hospital and a hereditary tumour specialist at P Cancer Center cooperated with the study. The interviews and field notes were coded and analyzed with MAXQDA software using the code matrix technique. Then, we analyzed the data using the “Benefit Delay model”. A marketing professor, Dr Kazuhiro Fujimura formulated it. This concept expresses the time gap between the start of the service delivery process and the point at which the customer perceives the benefit. Dr Fujimura defines three types of customer benefits. Functional Benefit is related to the outcome of the service. He added two more concepts related to the processes: Emotional Benefit and Perspective Benefit. Those make it possible to consider the benefit to the customer (i.e. the patient) even when the primary objective is uncertain (Fujimura, 2018).Through the study, we revealed that both Perspective Benefit and Emotional Benefit positively changed patients. In conclusion, this study advocates for the early involvement of genetic counsellors in the explanation process. By initiating face-to-face meetings with genetic counsellors and maintaining regular contact, patients can use the time until the disclosure of the results to reflect and actively participate. This approach can significantly reduce the overall burden on cancer genome medical professionals and improve patients’ benefits.

Keywords: genetic counselling, medical service, benefit delay, service management

DOI: 10.54941/ahfe1006419

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