Imagine fearing you may be at risk of breast cancer. You take the proactive step to get genetic testing and discover you carry a damaged BRCA1 gene, confirming higher than average risk. You took the right steps to empower yourself for your own health, but you’ve also done something that could haunt you financially.
Across most of the country, you’re required to disclose genetic testing results when applying for life, long-term care, or disability insurance. However, insurers can use the information to deny coverage or hike your premium.
Knowing that, would you still get tested?
This is the perverse choice that genetic discrimination forces on people. And the insurance industry’s justification for using your genetic information is looking increasingly hollow.
Insurers typically argue that genetic data is simply another piece of medical information, no different from knowing your family’s medical history. Insurance companies contend it helps them avoid passing the costs of a few high-risk individuals onto everyone else. Their argument is crumbling under the weight of what modern genetics has revealed.
First, genetic risk is far more complex than what family history alone can capture. Many people carry gene variants associated with serious risk, yet live full, healthy lives without developing the associated disease. The link between gene and destiny is probabilistic, not inevitable.
Second, the idea that only some people are genetically at risk of disease is no longer scientifically defensible. As a physician specializing in genetics, I could sequence your genome and find variants predicted to cause disease quietly lurking in your DNA. The truth is most of these variants will never cause trouble and the outcomes of differences in genetic coding vary greatly from case to case. We are all genetically flawed.
This becomes even more apparent when we use a new type of genetic analysis, the polygenic risk score, that tests for many common conditions. If you test any one person for dozens of these conditions, there’s more than a 99% chance they will show an elevated risk for at least one of them. Do this across an entire population, and everyone becomes a high-risk individual.
That insurance companies say they can identify a small group of high-risk individuals and price accordingly is no longer merely unfair, it’s scientifically false. Their logic opens the door to discrimination and predatory practices.
It’s a wonderful time to be working in the field of genetics. The pace of discovery is extraordinary, and the promise is real: better disease prediction, earlier intervention, and longer, healthier lives. We will, however, squander that promise if people are afraid of financial risk to use the technologies we can offer. Every person who skips genetic testing because they fear losing insurance is a missed opportunity for prevention and lives saved.
The solution isn’t complicated. We can follow what’s been done in states like Florida and internationally where the use of genetic data in insurance underwriting is banned. We must draw a clear legal line: what you learn about your genome is yours, and no insurer can use it against you.
This is what leaders in Albany are trying to achieve. The Dennis Crawley Genetic Protection Act of New York (S.9695/A.3229A) prohibits insurance companies from discriminating based on genetic predisposition and patients are empowered to seek answers when it comes to their individual health journey without fear of financial retribution.
We cannot let insurance companies exploit genetic information to serve their bottom line. The time to act is now.
John Greally, D.Med., Ph.D., Director of the NY Center for Rare Diseases at Montefiore, Bronx NY
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