In a recent review published in the journal npj Genomic Medicine, a group of authors examined the ethical, legal, and psychosocial implications of using genetic risk information in life insurance underwriting and its contribution to genetic discrimination (GD).
Study: Future implications of polygenic risk scores for life insurance underwriting. Image Credit: ArtemisDiana / Shutterstock
Background
Polygenic scores (PGS) represent a breakthrough in genomics, providing insights into an individual's susceptibility to a variety of health issues by summing up the effects of numerous disease-associated genetic variations. Although the clinical promise of PGS has been widely explored, its impact on the insurance sector, especially in evaluating risks for widespread complex diseases, has not been as thoroughly examined. The use of PGS in determining insurance premiums introduces profound concerns regarding GD, which could discourage people from getting genetic tests or contributing to scientific studies for fear of insurance discrimination. Further research is needed to understand the implications of PGS on insurance underwriting fully and to develop policies that prevent GD while utilizing genetic insights for public health.
Global regulatory responses to GD in insurance
Globally, nations have adopted various regulatory strategies to address GD in insurance underwriting, driven by the differences between community and risk-rated insurance models. These strategies include industry-initiated moratoria, as seen in Australia, collaborative government-industry agreements exemplified by the United Kingdom (UK), and legislative approaches like Canada's. The effectiveness and reach of these protections differ, with certain regulations only targeting specific types of insurance or having monetary limitations. Importantly, while some areas have no measures to prevent the use of genetic data in insurance, countries such as Australia are actively exploring solutions through public consultations, underscoring the widespread concern about GD and the continued efforts to mitigate it.
Clinical applications and challenges of PGS
PGS are increasingly valued in clinical settings, mainly for categorizing risk rather than diagnosing diseases. These scores could transform how populations are screened for widespread, complex diseases such as cancer, heart disease, and diabetes by influencing treatment and risk management plans. However, the effectiveness of PGS is constrained by the genetic inheritability of the condition in question and the genetic diversity represented in the genome-wide association studies (GWAS) data, which currently biases predictions in favor of individuals of European descent. Despite these obstacles, the adoption of PGS in medical practice is growing, leading 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 varying 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 encompass common health issues and traits. This widespread applicability raises concerns about amplifying GD in insurance practices, as PGS makes genetic risk assessments accessible to a more significant portion of the population, potentially without the safeguard of existing protections.
Clarifying protections against GD
Current regulatory frameworks designed to prevent GD often apply to traditional genetic tests, leaving ambiguity around the inclusion of PGS. This lack of clarity, combined with PGS's expansive potential, poses a risk of increasing the instances and scope of GD within life insurance underwriting. The absence of additional consumer protections specifically addressing PGS could exacerbate this issue, highlighting the need for clear regulatory guidance and expanded measures to safeguard against discrimination based on polygenic risks.
The challenge of interpreting PGS
Despite its growing availability, there is a notable absence of established guidelines for interpreting and reporting PGS. This gap is compounded by the ongoing development of statistical methods and the continuous influx of new GWAS data, which may alter PGS-based risk assessments 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 crucial to address its implications for life insurance underwriting to protect consumers against GD. This entails clarifying the extent to which existing protections cover PGS, introducing legislative measures specifically addressing PGS, and developing guidelines and training for insurers on the interpretation of genetic risk information. Additionally, further research is necessary to explore the issues of GD that PGS may introduce.
Recommendations for the field include advocating for a ban on the use of PGS in risk-rated insurance underwriting and ensuring regulations are adaptable, enforceable, and inclusive of both monogenic and polygenic testing.
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