Genetic Testing – What Does the Crystal Ball Really Reveal?

Would you want to look into a crystal ball and see your odds of contracting an illness or dying? If what the crystal ball revealed was grim, would you change the way you live your life?

With the cost of genetic testing rapidly decreasing and the availability increasing, group life and disability underwriters need to understand the basics and dynamics of testing and its potential impact to the industry. Insurers must understand both the potential risk from this informational imbalance while identifying ways widespread genetic testing can benefit insurers and consumers. The equality of information access between the applicant and the insurer will be an important element of any potential use.

Knowing the basics of genetic testing and its underlying science is the first step in understanding genetic testing’s potential impact on insurance. Genetic testing is best defined as the analysis of DNA, RNA, chromosomes, proteins and metabolites in relation to heritable risks, traits, and conditions.

The scope and cost of tests reside on a fairly wide spectrum:

• At the least expensive end of the spectrum are single nucleotide polymorphism (SNPs—“snips”) arrays. SNP array testing methods are those most commonly used by direct-to-consumer genetic testing companies like 23andMe. These tests analyze specific segments of DNA within a gene, looking for single nucleotide variations.
• The next cost level of tests is single gene and panel sequencing, which reveals the full expression of either one or several genes. Related testing involves whole exome sequencing (WES), which only decodes genes related to production of proteins. While WES only looks at ~2% of the genome, the overwhelming majority of disease-related mutations are located in this portion of the genome.
• At the upper end of test cost and depth, there is whole genome sequencing (WGS), in which all of an individual’s genetic material is mapped.

Why do individuals take genetic tests? Disease prediction is among the principal motivations to perform a test. However, while the association between certain genes and certain diseases has been established, the ability to predict disease has yet to be empirically proven. Further, although genetic testing is often portrayed with an air of universal infallibility, the potential predictive ability of all genetic testing is limited by the heritability of a given disorder. Heritability is the degree to which expression of a specific disease (or trait) can be attributed solely to genetic factors. Heritability varies considerably across diseases, and the ultimate expression of many common diseases is greatly influenced directly by not only the genome, but also by environmental factors and the interaction between genomic and environmental factors. The association between disease and specific genetic information is the most clear for Mendelian disorders, which are diseases caused by a mutation in a single gene. Cystic fibrosis is an example of such a disease. For polygenic disorders, those influenced by multiple genes, the possible predictive ability of genetic testing weakens considerably.

With an understanding of genetic testing basics in hand, the impact of genetic test results on individual behavior must be considered. Test results in their current form have not been shown to drive a consistent change in health habits. In a paper published last year that analyzed 18 studies of individuals who received physician-ordered genetic test results about disease risks, the findings showed that obtaining DNA information produced no significant effect on diet, physical activity, alcohol consumption, quitting smoking, sun protection, or attending disease-screening programs.

The impact to insurance and insurers is emerging. As it currently stands, private genetic testing information obtained by individuals does not necessarily allow them to select against insurers. Given the complexity of interpreting the results of genetic testing and the fact that the predictive value of testing has not been established to clinical standards, possession of information alone is not actionable in the absence of physician guidance. The significant difference in predicted disease risk by 23andME and deCODEme, the two most well-known direct-to-consumer testing providers, is indicative of the current, limited utility of consumer genetic testing. The lack of behavioral change linked to genetic test results implies that, under the present circumstances, knowledge that an insurance applicant has undergone a genetic test would not necessarily alter the underlying underwriting assumptions about the applicant.

As is the case with so much in the insurance industry, regulation plays a major role in the ongoing usage of genetic testing information in insurance. The Genetic Information Nondiscrimination Act of 2008 (GINA) expressly prohibits discrimination with respect to health insurance and employment on the basis of genetic information or the refusal to disclose genetic testing information. However, this law makes no restriction on the use of genetic information in the life, long-term care, disability, or critical illness lines. Although not protected federally, individual states do provide various levels of regulatory guidance with regard to the use of genetic testing information in non-medical lines, ultimately providing little consensus. As result, with few exceptions, Unites States insurers have thus far not used genetic test results as an underwriting consideration or required disclosure of genetic tests by an applicant. While mandatory testing is not an underwriting submission requirement, insurers can certainly assess genetic tests voluntarily disclosed at the time of underwriting, where legally allowed.

Insurers would likely agree that access to genetic testing, as it becomes more evolved, can improve patient care and could be incorporated into insurance products for policyholder benefit. Advances in medicine driven by genetic testing have the potential to benefit insurers through improved mortality and morbidity.

Pharmacogenetics is a prime example of genetic testing’s upside to life and living benefit insurers. Pharmacogenetics is the study of how an individual’s genetic makeup affects their response to various drugs. Expanding on this definition, pharmacogenetics is using one’s genes to determine the right dose, at the right time, for the right person—maximizing the effectiveness of existing drugs using genetic information. The upside to insurers is demonstrated in the increasing industry interest in leveraging pharmacogenetics testing within an insurance product. For group long-term disability, the benefits are most manifest. Reducing drug side effects and time spent trialing medications could allow claimants to return to work more quickly.

As with other forms of genetic testing, a major current limitation is that many pharmacogenetics reports offer sometimes confusing and contradictory information. Still, given the burgeoning number of medications for which the FDA currently offers specific pharmacogenetics guidance, over 200 at last count, it is easy to imagine the role pharmacogenetics will play in the future.

Genetic testing will likely continue to increase in prevalence as the cost of testing continues to fall. While the potential for insureds to have more complete information about their current and prospective health is a concern for insurers, the current lack of empirically proven applicability of genetic testing not only allays these concerns, but also presents a significant opportunity for insurers. With the industry’s wealth of data and intuition on mortality and morbidity, insurers are well positioned to integrate the new data created by genetic testing to further the usefulness of those genetic tests. Through partnerships with genetic testing companies and insurance consumers, insurers could drive improvements in the practical applicability of genetic testing for consumers while gaining new insights, allowing their products to better meet the needs of the market.

Although the improvements in the applicability of genetic testing are likely to provide passive benefits to insurance companies, the industry will benefit the most from this evolving technology by taking an active role in the continued development of genetic testing solutions.