Japanese insurers’ attitudes toward adverse selection and genetic discrimination: a questionnaire survey and interviews with employees about using genetic test results

Iida, Hiroshi; Muto, Kaori

doi:10.1038/s10038-020-00873-y

Cited by 6 publications

(5 citation statements)

References 7 publications

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“…FMs had concerns about being treated unfavorably based on genetic characteristics, while there are no laws or regulations against genetic discrimination in Japan [14,15]. Several studies showed despite the implementation of The Genetic Information Nondiscrimination Act (GINA) in the US, low awareness and insufficient understanding persists [16,17]; even in a survey conducted 10 years later, the respondents answered incorrectly and indicated that they would refuse genetic testing due to fairness of discrimination in employment and insurance [18].…”

mentioning

confidence: 99%

Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan

Kawata

Nagai

et al. 2022

J Hum Genet

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Whole-genome sequencing (WGS) is being used in research and clinical settings in cancer genomics. Studies show that cancer patients generally have positive attitudes toward tumor profiling tests; however, few works revealed their attitudes toward WGS. This study clarifies the expectations, concerns, and result preferences of cancer patients (CPs), family members (FMs) and general adults (GAs) regarding WGS study in Japan. We conducted an anonymous survey with 1204 CPs, 5968 FMs, and 2915 GAs in 2021. Despite low awareness of the WGS studies, CPs had the highest expectations for it. FMs had a higher level of concern than CPs and GAs; feeling anxious by knowing the results, being treated unfavorably if germline findings were detected. Both the FMs and CPs were highly concerned about the protection of genetic information. CPs preferred results with actionability, however, only half preferred to know germline findings. Given the possibility of detecting variants across multidisciplinary diseases and the long-term continuity of WGS research, a system is needed in which study participants can consult and receive decision-making support at any time according to their needs.

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confidence: 99%

Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan

Kawata

Nagai

et al. 2022

J Hum Genet

Self Cite

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“…The recent move by the Japanese insurance industry to adopt GD guidelines is laudable, but independent monitoring and review of their implementation would provide added credibility to this initiative. A 2020 survey on the attitudes of insurance employees toward adverse selection and GD shows that it is necessary to improve understanding of GD through communication and consultation to prepare the guidelines for Japanese insurers 68 .…”

Section: Discussionmentioning

confidence: 99%

Genetic discrimination: introducing the Asian perspective to the debate

Kim

et al. 2021

npj Genom. Med.

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Our article aims to provide a comprehensive portrayal of how seven Asian jurisdictions have sought to address the challenge of genetic discrimination (GD) by presenting an analysis of the relevant legislation, policies, and practices. Based on our findings, policy discussion and action on preventing or mitigating GD have been narrowly framed in terms of employment, insurance, disability, marriage, and family planning. Except for South Korea, none of the jurisdictions we examined has adopted specific legislation to prevent GD. However, for Asia to truly benefit from its recent scientific and technological progress in genomics, we highlight the need for these jurisdictions to engage more proactively with the challenges of GD through a coordinated regulatory and governance mechanism.

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“…Accordingly, we interviewed FAs and key informants to obtain their insights on the views on GD and life insurance, and the Moratorium. To our knowledge, this is the first study to conduct interviews with the financial advising sector about GD, unlike other financial industry stakeholders such as insurance companies [40][41][42].…”

Section: Permitted Behaviourmentioning

confidence: 99%

“…To understand how GD operates in Australia and ascertain the effectiveness of Australia’s current approach to regulating GD, empirical examination which captures insights from key stakeholders (e.g., consumers, health professionals, genetic researchers, and the financial industry) is required. To add to the evidence base, this article reports on the perspectives of the financial industry, specifically financial advisers (FAs), who unlike other financial industry stakeholders such as insurance companies [ 40 – 42 ], have not yet been studied, to the authors’ knowledge, in relation to underwriting in the context of genetic tests and GD.…”

Section: Introductionmentioning

confidence: 99%

Financial Advisers’ and Key Informants’ Perspectives on the Australian Industry-Led Moratorium on Genetic Tests in Life Insurance

Haining¹,

Tiller²,

Otlowski³

et al. 2023

Public Health Genomics

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Introduction: Genetic discrimination (GD) in the context of life insurance is a perennial concern in Australia and internationally. To address such concerns in Australia, an industry self-regulated Moratorium on Genetic Tests in Life Insurance was introduced in 2019 to restrict life insurers from using genetic test results in underwriting for policies under certain limits. Financial advisers (FAs) are sometimes engaged by clients to provide financial advice and assist them to apply for life insurance. They are therefore well-placed to comment on GD and the operation of the Moratorium. Despite this, the financial advising sector in Australia have yet to be studied empirically with regards to GD and the Moratorium. This study aims to capture this perspective by reporting on interviews with the financial advising sector. Methods: Ten semi-structured qualitative interviews were conducted with FAs and key informants and analysed using thematic analysis. Discussion/ conclusion(s): Participants’ level of awareness and understanding of the Moratorium varied. Participants reported mixed views on the Moratorium’s effectiveness and how it operates in practice, and perceived industry compliance. Participants also provided reflections on Australia’s current approach to regulating GD, with most participants supporting the concept of industry self-regulation but identifying a need for this to be supplemented with external oversight and meaningful recourse mechanisms for consumers. Our results suggest that there is scope to increase FAs’ awareness of GD, and that further research, consultation and policy consideration are required to identify an optimal regulatory response to GD in Australia

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Japanese insurers’ attitudes toward adverse selection and genetic discrimination: a questionnaire survey and interviews with employees about using genetic test results

Cited by 6 publications

References 7 publications

Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan

Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan

Genetic discrimination: introducing the Asian perspective to the debate

Financial Advisers’ and Key Informants’ Perspectives on the Australian Industry-Led Moratorium on Genetic Tests in Life Insurance

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