What is the Genetic Information Nondiscrimination Act (GINA)?
27.NOV.2023
Written by Anna Sanniti
Reviewed by Wendi Gill, CGC
Many people wonder whether having their DNA tested will lead them to face discrimination based on their results. The Genetic Information Nondiscrimination Act (GINA) of 2008 protects American citizens from discrimination based on their genetic information in both health insurance and employment. Genetic information is defined as information about your family medical history, any disease or disorder within the family, your or your family’s participation in clinical research that includes genetic services, and your or your family’s genetic test results (including those of a fetus or embryo). In this article, we will cover:
GINA in health insurance
GINA in employment
What this means for you
GINA in health insurance
GINA does not allow health insurers to discriminate based on genetic information. Specifically, health insurers may not use genetic information to determine if someone is eligible for insurance, or to make decisions around:
coverage (payment or reimbursement for your health care costs),
underwritings (a process used by insurance companies to try to figure out your health status when you're applying for health insurance), or
premium-setting decisions (the amount you pay for your health insurance every month).
The health insurance protections of GINA extend to all health insurers, including but not limited to, Medicare, Medicaid, Federal Employees Health Benefits, TRICARE, and the Veterans Health Administration. State laws may offer additional protections GINA’s health insurance protections do not apply to long-term care insurance, life insurance, or disability insurance, though some states have state laws that offer additional protections against genetic discrimination applicable to these types of insurance.
GINA in employment
GINA is implemented by the Equal Employment Opportunity Commission (EEOC) and prevents certain employers from using genetic information in employment decisions such as: hiring, firing, promotions, pay, and job assignments. GINA also prevents certain employers from requiring or asking for genetic information and/or genetic tests as a condition of employment. This also extends to employment agencies, labor organizations, joint labor-management training programs, and apprenticeship programs. Some employers are exempt from GINA’s limitations, including employers with less than 15 employees, the U.S., corporations wholly owned by the U.S. government, Indian tribes, and certain District of Columbia departments and agencies (collectively, “Exempt Employers”). For example, the U.S. Military is permitted to base employment decisions on genetic information. Although GINA’s insurance coverage protections apply to TRICARE, if a U.S. Military member’s employment is terminated based on genetic information, that member’s TRICARE coverage may be terminated because the member terminates employment.
What does this mean for you?
When you or your family take a genetic test, your employment and health insurance coverage may be protected under GINA. You also cannot be penalized for withholding your genetic test results from your health insurer or your non-Exempt Employer.
Let’s recap
GINA stands for the Genetic Information Nondiscrimination Act, which protects Americans from discrimination based on their genetic information.
GINA does not allow health insurers to discriminate based on genetic information.
GINA prevents employers from using genetic information in employment decisions.
When you or your family take a genetic test you are protected under GINA, and cannot be penalized for withholding genetic test results from your health insurer or employer.
References
1. National Human Genome Research Institute. Genetic discrimination. Online: genome.gov