Advances in genetic testing have made knowledge of our risks for hereditary cancers more accessible and empowered us to be proactive about our healthcare. Genetic information such as whether one carries the BRCA mutation, however, can make us vulnerable to discrimination. Remarkably, it has been more than 10 years since the US government acknowledged this dilemma. In 2008, the landmark Genetic Information Nondiscrimination Act (GINA) determined our genetic information was private and its protection is a civil liberty.
Arguably, genetic discrimination is at its worst when health insurance providers and employers treat people differently based on gene mutations that cause or increase the risk of inherited disorders. In response to this threat, GINA prevents health insurance providers and employers from requesting genetic testing results and discriminating based upon such information. Let’s take Jessie, hypothetical healthy BRCA mutation carrier, as an example. Jessie cannot be denied health insurance or experience changes in her coverage due to her results. If Jessie’s employers discover this information, they can neither fire her nor deny her a promotion.
Like most legislation, however, GINA has several caveats. The law does not apply to companies with less than 15 employees and does not cover discrimination in life, disability, or long-term care insurance. Seventeen states have expanded laws that protect against discrimination in these particular forms of insurance. California’s expansion of GINA, CalGINA, though, is the only state law that protects against discrimination in housing, mortgage lending, and education. Consequently, if Jessie does not live in California, she could be denied a mortgage based on her increased risk of developing breast, ovarian, or colon cancer. Considering that genetic predisposition to cancer is not a medical condition— Jessie does not have cancer— this becomes blatant discrimination against her genetic code.
Currently, there are no plans to expand the federal version of the law. In fact, a new house bill, H.R. 1313, introduced in March, 2017, and placed on the Union Calendar in December, 2017, would actually rollback some of GINA’s provisions. The bill is supported by large companies who want their workplace wellness programs to be able to request and have access to the genetic information of their employees. At first glance, workplace wellness programs seem like a great idea. They aim to improve health and fitness through using health risk assessments and encouraging employees to join smoking cessation, diabetes management, and weight loss programs. These “voluntary” programs are incentivized through discounts on health insurance premiums, gym memberships, and even cash rewards. Failure to enroll or meet benchmarks, however, can also be penalized by raising premiums, making such programs not really voluntary. If this new legislation passes, Jessie’s workplace wellness program will be able to ask whether she or a family member is a BRCA mutation carrier and request additional genetic testing. If she declines to join the wellness program or provide information for fear of discrimination, she could be penalized.
But why does a program intended to promote a healthy lifestyle need Jessie and her family’s genetic information? Again, Jessie is not sick and she is working with her healthcare provider about her options moving forward. A wellness program is not equipped to manage such medical information or advise on what is an extremely personal decision. In fact, the efficacy of such programs in improving wellness and lowering costs is still being disputed. What a wellness program could do with that legislative freedom, however, is deem her a liability and increase her premiums. Jessie’s DNA, therefore, which has been determined to be a protected class like gender and race, can be used to discriminate against her. Her civil right to privacy would also be eviscerated, since unregulated third party vendors who usually run wellness programs sometimes sell the medical information they collect.
Before you flashback to the GATTACA, remember the ability to decode our genes has helped us gain control of our bodies. If you have a strong family history of breast, ovarian, prostate and/or colon cancer it is important to secure your health insurance— and whatever additional insurances you may want down the road—and get genetically tested. Knowing your code will empower you and give you the tools to decide your healthcare options sooner rather than later. The power to know and act should never be penalized or used to prescreen people’s basic human right. Fortunately, the bill has not passed the house yet. There is still time to call your representatives and ask them to protect your genetic rights and vote NO on H.R. 1313.