Life Insurance and Genomic Research
The evolution of healthcare technologies in the 21st century has allowed for massive improvements in the speed and quality of biomedical research. Big data informatics, a crossover between the fields of data science and medicine, has allowed for large amounts of biological and clinical data to be generated at unprecedented speeds and scales. This new wave of technological innovation enables the processing of billions of DNA sequences per day, the accurate compilation data of thousands of patients into electronic health records (EHRs), and the training of complex machine learning models to help clinicians predict and evaluate potential early warning signs that are key to effective treatment. While the application of big data presents opportunities to discover new knowledge and improve the quality of health care, the rapid nature of technological development often neglects the potential harm it may inflict. This paper aims to investigate the potential risk factors behind the increased availability of genetic information, namely, to answer the question: should life insurance companies have access to patients’ genetic information?
As access to genomic research and information becomes less expensive and more available, the information it reveals becomes increasingly salient to the everyday world of consumer healthcare. A major concern layered within this discussion over genetic information in patient care is the potential for genetic discrimination, particularly in the cases of health and life insurance policies. When determining the sale and price of life and health insurance, insurance companies routinely run background checks on the risk factors associated with their new clients. While often these risk factors are personal to the customer, they just as well include questions about one’s family medical history. While the fears of many have been assuaged by the Genetic Information Nondiscrimination Acts banning of the genetic information’s impact on health insurance, this privilege has not been extended to life insurance or disability insurance underwriting. As our technologies advance, genetic information will become one of our best tools for disease prevention and treatment. Yet within these concerns, individuals at risk of serious genetic diseases have been placed in a position where they must fear a price increase, if not a total loss of coverage from their providers should they follow the best course of action in seeking care.
Since its creation, life insurance has held a very important social value, ensuring the continued support of a family after the death of their breadwinner. While in the age of genomic research this social value remains unchanged, the use of predictive genetic testing has created an asymmetry of knowledge between consumers and insurers. Through genomic research, clinicians have been able to recognize specific genes associated with increased risk factors for underlying conditions such as Alzheimer’s disease. Those who are potentially at risk of these underlying conditions without sources of preventative treatment have been advised by professionals and members of their communities alike to test anonymously, taking out life insurance policies without revealing their genetic background.1
Insurers have more traditional methods to access this genetic data, the increased prevalence of EHRs, however, makes these genetic red flags more accessible than ever. While in countries such as Australia have signed temporary moratorium regarding protections for genetic knowledge2, these measures have been widely seen as tokenistic offerings as they are self-regulated by the insurance industry. No such moratoria has been signed in the United States, causing hesitance on the side of consumers, posing great risk to the potential future of genetic technologies. As one study shows that participants hypothetical interest in participating in research decreased dramatically when informed about the limited protections offered, with over two-thirds of them citing life insurance companies as a primary concern.3 4
While previous philosophical scholarship has proposed insurers should avoid “unfair discrimination”, the lack of concrete definition raises many questions. The notions of unfairness and risk in policy risk assessment involves a delicate act of negotiation between all involved parties, balancing the wellbeing of the consumer with the needs of fiscally wary businesses owners. If not handled delicately, conservative risk adjustments based on genetic information could price many people out of the life insurance market.
While there are several solutions to these issues, all come with potential caveats. One option is a government ban on insurance companies’ access to genetic information. While this option may seem ideal it has the potential to uniformly raise the price of life insurance for all, creating an environment where, due to a free-rider problem, we must all now pay a premium for our privacy. Another option is allowing insurance companies access to limited information surrounding high-risk individuals. While this option limits the scope of insurers access, it also forces a minority of people, who are often from at risk populations to be denied or priced out of coverage. Lastly, a form of modest universal care such as what is available in European countries might be instituted, allowing insurers access only to those who wish to purchase additional coverage.
Operating under the assumption that life insurance should be categorized as a social good, the final solution makes the most logical sense. While providing a base level of care to all, those who desire an elevated degree of coverage must reveal their genetic information to insurers. In determining what genetic information should be revealed, input from researchers and policy experts is essential, as transparency is essential in assuaging the fears of the public and ensuring the unbiased nature of these processes.
Genetic information is undoubtedly different from all types of big data and medical data that has come before it. As such its nature as a genetic predisposition outside of an individual subject’s control is necessary in considering its implications for the future of life insurance and genetic research. Policy makers, researchers, and physicians must consider the complex ramifications these technologies can have before it becomes too late.
- Klitzman, Robert. Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing. United Kingdom: Oxford University Press, USA, 2012.
- Tiller, J., Bakshi, A., Dowling, G. et al. Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing. Eur J Hum Genet 32, 286–294 (2024). https://doi.org/10.1038/s41431-023-01373-1
- Prince, A. E. R., Suter, S. M., Uhlmann, W. R., & Scherer, A. M. (2022). The goldilocks conundrum: Disclosing discrimination risks in informed consent. Journal of genetic counseling, 31(6), 1383–1393. https://doi.org/10.1002/jgc4.1613
- Parkman, A.A., Foland, J., Anderson, B. et al. Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections. J Genet Counsel 24, 512–521 (2015). https://doi.org/10.1007/s10897-014-9771-y
