Be Aware of Genetic Testing Rather Than Beware of Genetic Testing

Many people have questions about how their genetic information can be potentially abused:

What happens if my genetic information is revealed to my health insurance company?

Can my employer force me to take genetic tests before giving me a job or deny me a job based on the results of a genetic test?

The short answer is that you are protected by the Genetic Information Nondiscrimination Act of 2008 (GINA), also known as Public Law 110-233 (read more about it here).  The law is not perfect, but it does provide a law on the federal level, rather than relying on each state.  It is important to note that a state may have MORE strict laws relating to genetic nondiscrimination, but it cannot have LESS strict laws or conflict with the federal law.  That’s the beauty of federal preemption of state laws on the same subject matter.

So let’s look at the questions above in more detail:

1.       What happens if my genetic information is revealed to my health insurance company? 

So Cigna (Aetna, BC/BS) requested information from your health care provider relating to your bad back to cover your treatments…. instead of sending in the back pain specific parts of your chart, your health care provider decided it was easier to just fax in the whole record to the insurance company.  Great.  You were recently tested for genetic variants that increase your risk of breast and ovarian cancer because your mom and grandmother both had breast cancer.  Now what? Do your premiums skyrocket because of your increased risk? 

No.

Under GINA, an individual’s genetic information cannot be used to deny you coverage or determine how much it costs.  However, they can still deny insurance or raise your rates based on your current health status.  For example, if you already had breast cancer. What if you had breast cancer?  Can the insurance company make your daughter take a genetic test to expose her risk of developing breast cancer?

No.

Under GINA, health insurers cannot request you to take a genetic test.  However, your healthcare provider can absolutely request that you take a test (we want this!)  The results do not affect your eligibility or premiums!

2.       Can my employer force me to take genetic tests before giving me a job or deny me a job based on the results of a genetic test or information?

Wow! You just got the job offer of your dreams and now you must take a drug test and a physical.  Seems reasonable, except they give you a questionnaire and ask you to tell about your family medical history:  “Does anyone in your family have heart disease, hypertension, cancer, diabetes, arthritis, or mental disorders?”  Some or all of these conditions are known to have a genetic component.   Can they ask you for this information? Can the employer now rescind your job offer if they think you have a genetic predisposition to developing a mental disorder?

No and No. 

Under GINA, employers cannot use genetic information for hiring, firing, job assignments and promotions.  However, the company doctor can certainly provide information about a genetic test as part of a general wellness program.  Under GINA, employers are not allowed to request, require or purchase genetic information about you or your family. 

Earlier this week I received an alert from Google regarding a new article about GINA.  It turns out the Equal Employment Opportunity Commission (EEOC) just settled its first GINA lawsuit.  The company required an employee to fill out a health questionnaire and a physical examination.  After finding the employee had carpel tunnel syndrome, they took back the job offer (it was for a distributor of decorative fabrics).  The company violated GINA when they asked her to disclose medical history and violated the Americans with Disabilities Act when they discriminated on the basis of her “perceived disability” with the carpel tunnel syndrome.

I hope this gives you some comfort when considering genetic testing.  You should not be afraid that your test will give insurance companies and employers ammo they want to deny you insurance or a job!