Genetic risk results in life insurance implying fear of discrimination

In a recent review published in the journal npj Genomic Medicine, a group of authors examined the ethical, legal and psychosocial implications of the use of genetic risk information in life insurance and its contribution to genetic discrimination (GD).

Study: Future Implications of Polygenic Risk Results for Life Insurance Underwriting.  Image credit: ArtemisDiana / ShutterstockStudy: Future Implications of Polygenic Risk Results for Life Insurance Underwriting. Image credit: ArtemisDiana / Shutterstock


Polygenic scores (PGS) represent an advance in genomics, providing insight into an individual’s susceptibility to a variety of health issues by summarizing the effects of multiple genetic variations associated with disease. Although the clinical promise of PGS has been widely explored, its impact on the insurance sector, particularly in risk assessment for complex prevalent diseases, has not been fully examined. The use of PGS in determining insurance premiums raises deep concerns about GD, which may discourage people from taking genetic tests or contributing to scientific studies for fear of insurance discrimination. Further research is needed to fully understand the implications of PGS for insurance underwriting and to develop policies that prevent GD using genetic knowledge for public health.

Global regulatory responses to GD in insurance

Globally, nations have adopted different regulatory strategies to address GD in insurance underwriting, driven by differences between community and risk-assessed insurance models. These strategies include industry-initiated moratoriums, as seen in Australia, collaborative government-industry agreements exemplified by the United Kingdom (UK), and legislative approaches such as Canada’s. The effectiveness and extent of these protections vary, with certain regulations targeting only specific types of insurance or having monetary limits. Importantly, while some jurisdictions do not have measures in place to prevent the use of genetic data in insurance, countries such as Australia are actively exploring solutions through public consultation, highlighting widespread concern about GD and ongoing efforts to soften it.

Clinical applications and challenges of PGS

PGS are increasingly evaluated in clinical settings, primarily for risk categorization rather than disease diagnosis. These results could transform how populations are screened for widespread, complex diseases such as cancer, heart disease and diabetes, influencing treatment and risk management plans. However, the effectiveness of PGS is limited by the genetic heritability of the condition in question and the genetic diversity represented in genome-wide association studies (GWAS) data, which currently bias predictions in favor of individuals of European descent. Despite these obstacles, the adoption of PGS in medical practice is increasing, causing the life insurance sector to reevaluate how genetic data is used in underwriting policies.

PGS and life insurance: Navigating genetic risk assessments

Traditionally, genetic testing focused on identifying rare monogenic conditions within a small segment of the global population. This targeted approach, governed by various international guidelines, ensured that only those with a significant likelihood of carrying pathogenic variants underwent testing, limiting the impact on life insurance underwriting. In contrast, PGS offers a broader application, extending beyond rare conditions to include common health issues and traits. This widespread applicability raises concerns about amplification of GD in insurance practices, as PGS makes genetic risk assessments accessible to a larger portion of the population, potentially without the protection of existing safeguards.

Clarification of defenses against GD

Current regulatory frameworks designed to prevent GD often apply to traditional genetic tests, leaving ambiguity about the inclusion of PGS. This lack of clarity, combined with the expanded potential of PGS, poses a risk of increased incidence and scope of GD within the life insurance underwriting. The lack of additional consumer protections that specifically address PGS may exacerbate this issue, highlighting the need for clear regulatory guidance and enhanced measures to protect against discrimination based on polygenic risks.

The challenge of interpreting PGS

Despite its increasing availability, there is a notable lack of established guidelines for the interpretation and reporting of PGS. This gap is compounded by the ongoing development of statistical methods and the ongoing influx of new GWAS data, which may alter PGS-based risk estimates over time. The current predominance of data from European populations further limits the predictive accuracy of PGS for individuals of non-European ancestry. These factors underscore the complexity of using PGS in life insurance underwriting and the potential for misinterpretation, particularly when insurance providers may lack the expertise to accurately assess polygenic risk information.

The future of PGS in insurance and recommendations

As the use of PGS in both clinical practice and research expands, it is essential to address its implications for life insurance underwriting to protect consumers against GD. This requires clarifying the extent to which existing protections cover PGS, introducing legislative measures that specifically address PGS, and developing guidance and training for insurers on the interpretation of genetic risk information. Additionally, further research is needed to explore the GD issues that PGS may present.

Recommendations for this area include advocating for a ban on the use of PGS in underwriting risk-weighted insurance and ensuring that regulations are adaptable, enforceable and inclusive of monogenic and polygenic testing.

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