(Note from Shannon: I am a lawyer, but this article does not constitute legal advice or create an attorney-client relationship between myself and the reader. If you have a question about your legal rights, please contact your local bar association, or a licensed attorney in your state).
One of the biggest concerns in BRCA testing (aside from the results), is the potential for discrimination. You hear a lot of chatter about the potential ramifications in everything from your job to your insurance. If you are considering genetic testing, you need to know your legal rights.
Last night, I attended a webinar with Sandra Park, an attorney with the ACLU, who worked on the Myriad Genetics case (a link for the webinar can be found here). The topic of conversation was the Genetic Information Nondiscrimination Act (GINA) of 2008. As we attempt to educate ourselves and become empowered patients, we need to learn how to protect ourselves from discrimination.
GINA is the legislative act that prohibits the discriminatory use of genetic information. Enacted in 2008, the legislation applies only to employment and health insurance. According to the act, none of the following can be used against you in your job (or any potential jobs) or health insurance: family medical history; genetic testing (including the mere fact that you tested, as well as, the results of those tests); genetic counseling; and the participation in research studies. GINA does not apply to life insurance, disability insurance, or long term care. As such, it is still possible for genetic information to be used against you in these areas. Nor does GINA cover the manifestation of disease — meaning, for example, an actual cancer diagnosis. A diagnosis, though, is considered a pre-existing condition, which is covered by the Affordable Care Act. So, where GINA leaves off, the ACA picks up. For anyone over the age of 19, the ACA kicks in January 2014 (for everyone under 19, the Act is already in effect) and prohibits discrimination on the basis of a pre-existing condition.
GINA offers great protection in terms of health insurance. Health insurance companies cannot restrict enrollment based upon your genetic information. The price of premiums cannot be adjusted due to your genetic information. Your insurance cannot require you to participate in genetic testing, with few exceptions (most notably, to determine whether a procedure should be covered by insurance). Basically, health insurance should not cost more, or be impossible to get, simply because you test for BRCA.
As for employment, GINA is equally heavy-handed against employers. According to the Act, employers are not allowed to classify or discriminate against their employees based upon genetic information. They cannot share genetic information about their employees, nor can they acquire genetic information about their employees (with few exceptions). If you file a claim against your employer under GINA, they are not allowed to retaliate. Unfortunately, according to the EEOC, the majority of cases filed under GINA have not been successful due to insufficient evidence of discrimination. If you believe you are being discriminated against by an employer on the basis of your genetic information, the first step is to file a complaint with the Equal Employment Opportunity Commission (EEOC). You are protected under Title VII, which covers general civil rights and prohibits discrimination on the basis of race, gender, and beliefs. GINA was added to this law upon its enactment.
The bottom line is this: your family history of cancer should not be used against you. The Genetic Information Nondiscrimination Act is a great shield of protection in your job and your health insurance. There are a lot of gaps in it, though, and it is not always easy to prove you are being discriminated against. If you are considering testing, document everything along the way. Know your rights and protect yourself.