This article by Carol Harnett, president of The Council for Disability Awareness, was recently published in Human Resource Executive.
Over time, I discovered that the MC1R gene was responsible for my red hair and freckles, and those traits, in combination with my blue eyes, placed me in the rarest of the ginger categories: a tribe that makes up less than 2 percent of the world’s population.
Genetics continued to grab my interest over the years, but that curiosity started to package itself with concern as more became known about human DNA. The first big pause I took to contemplate the impact of genetic information came when 23andme—one of the first direct-to-consumer genetic-testing companies—invited me to participate in a beta test.
It was 2008 and I was about to attend my first TED conference. The company invited the 1,000 participants to learn about their genetic profiles. I let the 23andme package sit on my desk for about a week. My internal debate revolved around whether I wanted to know if I had a genetic susceptibility for which there was currently no treatment. I finally caved in to my scientific interest, spit in the tube, sealed the envelope and overnighted my DNA to the company.
The results were anti-climactic. It turns out I have a remarkably solid set of inherited “wellness” characteristics. Or, at least I think I do.
The other traits the initial report listed (and still lists over the 10 years of updates) were laughingly off, including that I most likely don’t have freckles or red hair. And this gives me some pause as to whether my reported wellness variables are, indeed, correct.
I began to consider writing a column about genetic testing when someone passed me a copy of a survey of 14 disability carriers regarding whether they would pay the claims of women who underwent procedures associated with testing positive for inherited mutations of the BRCA1 or BRCA2 genes. (Approximately 72 percent of women who inherit a BRCA1 mutation and about 69 percent of women who inherit a BRCA2 mutation will develop breast cancer by the age of 80, while about 44 percent of women who inherit a BRCA1 mutation and approximately 17 percent of women who inherit a BRCA2 mutation will develop ovarian cancer by the age of 80.) Experts often recommend that women who carry these mutations consider both preventive bilateral mastectomies and removal of their ovaries and fallopian tubes by their mid-30s to early 40s.
There was wide disparity in the carriers’ responses to how they would process claims. Some considered bilateral mastectomies associated with a positive genetic test to be related to a pre-existing condition and, therefore, not payable. Others believed that preventive mastectomies related to a mutation of BRCA12 were elective procedures. As a result, the disability claim was not compensable under the elective-procedure provision. Still others would deny disability associated with subsequent breast-reconstruction surgeries under the elective-surgery and/or cosmetic-surgery provisions.
The range of answers and the logic applied by some providers regarding BRCA12 mutation carriers were shocking to me. But, there was a moment of hope when I reviewed a similar question asked about disability claims related to organ donation.
When I first joined the disability-insurance industry in the late 1990s, an organ donor’s disability claim was denied under the elective-procedure provision. Almost 20 years later, all but one carrier stated they would approve an organ donor’s claim—and the one carrier that wouldn’t pay the claim indicated it often made an administrative decision to approve the claim despite the contract.
As genetic testing becomes more common, I believe the carriers will rethink their positions (at least as it relates to women who learn they have genetic mutations after they enroll in disability coverage), or employers self-insured for short- and long-term disability will instruct the carriers or third-party administrators to pay these disability claims.
But here’s the catch that is up for debate: If people find out they carry a genetic mutation before they sign up for life, disability or long-term-care insurance, are they subject to denial of coverage due to a pre-existing condition, even though the genetic mutation may never “express itself?” The answer may be a qualified yes, depending upon the carrier and/or the state in which the person lives.
The Genetic Information and Nondiscrimination Act of 2008 prohibits employers and health-insurance companies from discriminating against people due to genetic information. However, when the act was passed, life, disability and long-term-care insurance were consciously omitted. This omission allows life and disability insurers to legally discriminate against people with genetic conditions or risk factors that predispose them to diseases—which brings me back to direct-to-consumer genetic testing.
There is a new trend among D2C companies such as Color Genomics, which wants employers and HR leaders to offer genetic testing to employees as an employee benefit. And while I, like many with my background, see the power of genetics as it relates to precision (or personalized) medicine, I’m incredibly concerned about how employers could inadvertently destabilize their employees’ financial wellness.
If employees do not currently carry individual life, disability or long-term-care insurance prior to participating in genetic testing, and they find out they possess a genetic abnormality, they may never be able to enroll in this coverage in the future. Even if you provide employer-paid life and disability coverage to your workers, if they leave your employment, they may not take their life insurance with them—and their disability coverage is not portable…
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