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Peeking at Your Genes Can Raise Red Flags for Life Insurers

May 15, 2019, 9:23 AM

If you have genetic mutations linked to breast cancer, Alzheimer’s, or dementia, there’s a chance you could be rejected for life and long-term care insurance.

Advocates of genetic testing worry that people will forgo testing—and therefore earlier identification and treatment of diseases—out of fear of losing coverage.

Companies such as 23andMe Inc. increasingly let people test for genetic markers that may foreshadow serious diseases later, which can be a boon for scientific research and patient care.

But ignorance may be bliss when it’s time to sign up for insurance. Employers and health insurers by law can’t discriminate on the basis of an applicant’s genetic makeup, but the same rules don’t apply to life- and long-term care insurers like Prudential Financial Inc., Northwestern Mutual, and MassMutual Inc.

“Fear of insurance discrimination is a major obstacle for the implementation of life-saving genomic medicine and genomic research,” Robert Green, a medical geneticist at Brigham and Women’s Hospital, the Broad Institute, and Harvard Medical School, said.

“It’s well recognized that even people who really need genetic testing will sometimes refuse to get it because they’re afraid the results will be used against them,” he said.

Coverage decisions are more complicated than that, Jack Dolan, a spokesman for the American Council of Life Insurers, said. “Life insurance underwriting is a holistic evaluation—insurers usually do not make decisions based on one factor like a genetic test,” he said. “They look at the whole picture, including steps the person might be taking to manage that condition.”

Disparity in Law

Genetic testing advocates would like to see discrimination protections extend to life and long-term care insurance, since the Genetic Information Nondiscrimination Act of 2008 (GINA) only applies to health insurance and employment.

“GINA does not cover [life and long-term care insurance] and that was a purposeful decision,” Laura Hercher, a clinical genetics counselor for National Society of Genetic Counselors, said.

“They didn’t think they could get agreement on a law that covered all of those things. Of course, it would be great to see regulation cover that, but I’m not particularly hopeful right now.”

When GINA was enacted, insurers lobbied heavily for life and long-term care insurance to be excluded from the measure, according to Lisa Schlager, vice president of community affairs and public policy at Facing Our Risk of Cancer Empowered.

Their power hasn’t faded. “Unfortunately, because the strength of insurance lobby is strong, I think it’s pretty slim for an update,” Schlager said. “We don’t have a champion for a GINA update right now in this political climate, so it will very difficult to get, but maybe not impossible someday.”

Jalayne Arias, an assistant professor at the Memory and Aging Center at University of California-San Francisco, hopes lawmakers consider the consequences of imposing coverage requirements on insurance actuaries.

“It is unclear whether GINA or a similar legislative action is the most appropriate,” Arias said. “This is an area where further research is needed to understand the mechanisms that would appropriately balance protections for individuals without disproportionately burdening the insurers.”

The Whole Picture

Insurers choose premium rates based on how they classify risks such as a person dying prematurely, becoming disabled, or needing long-term care.

“It makes sense for life insurance companies to charge people based on their life expectancy,” Dolan said. “The results of a genetic test that a person has taken as ordered by a doctor may be of interest to an insurer. But it would represent one more piece of medical information. It might—or might not—be relevant.”

Life and long-term care insurance companies also consider various factors—such as height and weight, blood pressure, cholesterol, blood sugar, smoking status, and medical history—before denying coverage or determining how much coverage will cost.

State Protections

There could be the slight chance for discrimination litigation against life and long-term care insurance depending on where you live, Fatima Afia, an associate attorney at Hiller P.C., said.

There are at least 14 states with laws extending GINA’s protections beyond health coverage, including Arizona, Wyoming, California, Maryland, Florida, North Carolina, and New Jersey.

“The level of protection afforded in each of those states, however, varies,” Afia said.

“For instance, in Florida and North Carolina, insurers are prohibited only from discriminating against consumers who have particular genetic traits such as the sickle-cell trait, whereas New Jersey categorically prohibits discrimination against individuals based upon their genetic information.”

To contact the reporter on this story: Ayanna Alexander in Washington at

To contact the editors responsible for this story: Fawn Johnson at; Andrew Childers at