Genetic Counselors have been asked many times by patients, what happens if I do genetic testing and it shows I have a genetic condition? Can I lose my job? Health Insurance? Will I still be treated appropriately by doctors? There are many valid questions that come with the decision to pursue genetic testing. Sometimes a person pursues a genetic test to determine if they will develop disease at some point in their lives, while others are tested to determine the cause of the disease they already have. Either way, there are laws that protect against genetic discrimination, most importantly, the Genetic Information Nondiscrimination Act.
Can You Be Discriminated Against if You Pursue Genetic Testing?
The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their genetic information. This applies to several areas of an American’s life. Title I of GINA through a series of already placed Acts, including the Health Insurance Portability and Accountability Act of 1996 (HIPPA), prohibits health insurers from genetic discrimination. Specifically, health insurance companies cannot use genetic information to determine if a person qualifies for their health insurance, what that person’s policy covers for medical care, or how much their insurance will cost. In addition, health insurance companies cannot request that a person pursues genetic testing or any other family members to make these types of decisions. The law defines genetic information as family medical history, diagnosed disease in family members, and any genetic tests performed in the family.
It is important to note that there are some limitations to Title I of GINA. While this law applies to private health insurance companies and government health insurance, the U.S. Military’s TRICARE insurance program has more limited protection under GINA. In addition, GINA’s health insurance protections do not cover long-term disability insurance and life insurance. If a person is contemplating the option of pursuing genetic testing, especially testing that could indicate an increased risk to develop disease during their lifetime, it is important to have life insurance and long-term disability insurance policies in place prior to pursuing genetic testing, because GINA does not protect a person with these types of policies. Discussing these issues and options with a genetic counselor can better enable a person to have all of the information necessary to make these difficult decisions.
Equal Employment & the Genetic Information Nondiscrimination Act
Title II of GINA is implemented by the Equal Employment Opportunity Commission and prevents employers from using genetic information to make decisions about an employee in terms of firing, hiring, promotions, pay, or job assignments. Employers also can’t require an employee to pursue genetic testing or give an employer genetic information about themselves. This portion of GINA took effect on January 10, 2011. Title II of GINA does not apply to the U.S. Military and does not apply to employers with fewer than 15 employees.
A scenario in which it would be important to know about GINA and what rights a person has is if a person meets with a genetic counselor because of a strong family history of breast and ovarian cancer. Let’s say a person has multiple family members who have been diagnosed with breast cancer in their 30s, and several family members who have passed away from a diagnosis of ovarian cancer. There would be a strong suspicion of this person or a family member to have a gene mutation in a breast cancer gene that places them at high risk for breast and/or ovarian cancer throughout their life. Regardless if the person meeting with the genetic counselor has a diagnosis of cancer or not, prior to genetic testing it is important to discuss GINA and their rights, including the option of pursuing life and long-term disability insurance prior to genetic testing. If the person does have a gene mutation that places them at high risk for cancer, his or her family members also have the right to understand GINA and discuss their options prior to pursuing genetic testing.
Questions about Genetic Testing or Genetic Counseling?
If you are interested in pursuing genetic testing or discussing GINA and your options, please contact AT-GC to meet with a genetic counselor.