Hacking Your Genome: How Insurance Companies Legally Discriminate Against You and Your Family

I always feel obliged to ask my patients to consider carefully what they might be getting themselves and their families into before they have any genetic testing or sequencing done that is not anonymous.
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It's currently illegal in the United States for employers and health insurance companies to discriminate based on genetic information, thanks to The Genetic Information and Nondiscrimination Act, or GINA, which was passed in 2008, which prohibits it. This was a significant step, known by some as the "anti-Gattaca law," because of the rumor that politicians were moved to support the measure after seeing the 1997 film about a genetically-tiered future society.

Unfortunately, though, and unbeknownst to many, GINA provides absolutely no protection against discrimination in matters of disability and life insurance. This is no accident, but rather a glaring omission that was intentionally crafted in GINA that allows life and disability insurance providers to legally discriminate against people with genetic conditions or risk factors that might predispose them to disease.

Consequently, as a physician, I always feel obliged to ask my patients to consider carefully what they might be getting themselves and their families into before they have any genetic testing or sequencing done that is not anonymous. Because what we discover -- while potentially vital for their health -- can also become a disqualifying factor for disability and life insurance for them personally, their immediate family, and all their future genetic descendants. In this way, one person's genetic tests results can expose an entire family tree to genetic discrimination.

As genetic testing and sequencing becomes more routinely used in different aspects of medical care, from pediatrics to gerontology, we'll have more information at our disposal to be able to link distinct health risks with our unique genetic inheritance. This means more opportunities for discrimination -- or even persecution.

And here's where things get even more frightening. These days, a potential insurance provider, or anyone else for that matter, doesn't have to touch a single one of your cells to get a lot of information about your genetic inheritance.

Do you have a family member who was found to have a genetic predisposition to early onset Alzheimer's disease? Did they blog about it? Facebook it? Tweet it? Social media's not just a great way to keep in touch with our loved ones -- it's also a potentially very deep and rich source of information for genetic cyber sleuths. Already, more than a third of employers say they've used information found on social media sites such as Facebook to eliminate job seekers from the applicant pool. Companies might feel economically justified in making secretive social media genetic health status sweeps a regular part of their hiring practices.

Using just your name and the millions of genealogy records publicly available on the Web, an inquisitive and resourceful person -- someone considering providing you with life or disability insurance, perhaps -- could come to know more about you genetically than you might even know about yourself. And that information could be used against you in many ways.

Given these risks, why should anyone consider getting genetic testing done in the first place? Well because the benefits of clinically appropriate genetic testing are immensely high. The results of genetic testing can provide valuable information about your risk for certain inherited conditions and can be used to provide screening regimens and treatments that lengthen your life. A negative genetic test is also useful since it can offer an individual relief and reduce unnecessary screenings and treatments. No one should ever have to decline genetic testing because of fear of discrimination.

Unfortunately, for some people this very real possibility of being denied insurance prevents them from accessing lifesaving treatments that can be offered by healthcare workers. And to whose benefit? Certainly not yours or mine... unless you happen to be a discerning insurance agent.

Sharon Moalem M.D., Ph.D., is an award winning inventor, physician and scientist. He is the author of the New York Times bestselling book Survival of the Sickest and Inheritance: How Our Genes Change Our Lives -- and Our Lives Change Our Genes.

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