This March, 23andMe, a direct-to-consumer (DTC) genetic testing company, received approval from the Food and Drug Administration (FDA) to test for predispositions to breast and ovarian cancer.
While this latest approved test is quite limited, because it only tests for three changes out of the thousands possible in the BRCA1/2 genes, it highlights the growing ability of individuals, and potentially insurers, to gather information about future risk for disease.
Consumers, by and large, perceive increased access to such testing as positive, but insurance experts have predicted that it could send the industry into a death spiral.
Essentially, the argument is that unless insurers have equal access to the results, consumers with a known predisposition to a costly disease would buy excessive amounts of insurance without insurers having the ability to accurately underwrite the coverage.
Consumers, on the other hand, fear that insurers will decline coverage or increase rates in anticipation of a diagnosis, even when only predisposition is indicated and not the actual disease.
With all of this information in hand, consumers and insurers must work together to establish some guidelines for regulating insurer use of genetic information. Ideally, these guidelines could strike a balance that would give consumers some assurance that insurer access to genetic information would not lead to discrimination, and, at the same time, ensure that insurers have the information needed to effectively underwrite coverage.
Before diving into this debate, one might ask: “Should we even care about insurer use of genetic information?”
For almost a decade now, health insurers have been prohibited, under the Genetic Information Non-discrimination Act (GINA), from collecting genetic information or using that information when underwriting coverage. However, GINA does not apply to long-term care insurance (LTCI) or life insurance products. While fewer Americans have LTCI or life insurance than health insurance, the number of Americans who own such policies is still significant. For instance, the National Association of Insurance Commissioners (NAIC) reports that about 7.2 million Americans own LTC policies. LIMRA)reports that 44% of U.S. households own individual life insurance policies. Thus, insurer use of genetic information has the potential to impact millions of Americans.
Given that insurer use of genetic information might have a far-reaching impact, the next question is: “How should insurer use of genetic information be regulated?”
One option insurers might favor is maintaining the status quo. Currently, at the federal level, LTCI and life insurance companies are allowed to internally set the guidelines for use of customers’ genetic information. Standard practice is that customers are not asked for genetic information, likely because the vast majority of genetic information is not useful when it comes to underwriting coverage.