The Genetic Information Nondiscrimination Act (GINA) Q and A

General

What is GINA and what does it do?

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information.  It also protects against improper access to genetic information.

What is genetic information?

The genetic information protected by the law includes family health history, the results of genetic tests, the use of genetic counseling and other genetic services, and participation in genetic research.

Employment

Does my employer have to comply with GINA?

GINA applies to all employers with 15 or more employees, regardless if it is a not-for-profit organization or a corporation.

GINA’s protections in employment do not extend to the US military or employees of the federal government. In 2000, President Bill Clinton signed Executive Order 13145 into law, which protects federal employees from genetic discrimination in employment. The US military has its own policies in place that may protect members of the military from genetic discrimination.

When is it legal for my employer to know my genetic information?

There are some exceptions to GINA that determine when an employer can legally have your genetic information. Some of the more common situations may include:

  • Inadvertent knowledge: In some cases an employer may learn about an employee’s genetic information accidentally. If he or she overhears a conversation about an employee’s sick parent, for example, the employer has not violated GINA.
  • Publicly available information: An employer may learn the genetic information of an employee or the employee’s family members if it is available in the newspaper or other publicly available information sources. If the employer learns of an employee’s genetic information this way, the employer has not violated GINA.
  • Voluntary health services: Some employers offer voluntary health or genetic services, including employee wellness programs. If specific requirements are met and participation in the service is voluntary, then forms, questionnaires, or health care professionals treating employees as part of the service may request family health history or other genetic information.
  • Family and Medical Leave Act (FMLA): Forms that employees must fill out as part of asking for time off from work to care for a sick family member may include questions about genetic information. Employees may need to provide this information for extended leave to be approved.

In all the above instances, it is against the law for employers to use the genetic information collected to discriminate against employees.

If my employer finds or collects my genetic information legally, what measures must she take to ensure my information is kept private?

Under GINA and the Health Insurance Portability and Accountability Act (HIPAA), all medical information collected by an employer, including genetic information, must be kept in a confidential, separate medical record.

Health Insurance

Does GINA apply to my health insurer?

GINA’s protections apply to most health insurers. GINA applies to the health insurance plan you receive through your employer (a group plan) as well as health insurance you purchase on your own (an individual plan) for you and your family. GINA also applies to Medicare supplemental policies for individuals who have insurance through Medicare.

The health insurance protections of GINA do not apply to:

  • Members of the US military who receive their care through the Tricare military health system
  • The Indian Health Service
  • Federal employees who get care through the Federal Employees Health Benefits Plans

These groups have policies in place that provide protections similar to GINA.

Does GINA mean that a health insurer can’t raise my premiums or deny me coverage if I have already been diagnosed with a genetic condition?

No. GINA does not stop health insurers from basing their decisions about eligibility, coverage, or premiums on current symptoms or diagnosis of a health condition (also known as “current health status” or “manifest disease”). This is true even if the condition is a genetic disease or was diagnosed in part by a genetic test.  However the newly enacted federal Affordable Care Act does make changes in this area. Please refer to the Affordable Care Act discussion on our site.

Can insurance companies discriminate against me if a family member has been diagnosed with a health condition?

No. GINA makes it against the law for health insurers to use information about diagnosed conditions in an individual’s family members.

GINA defines family member as a first- (child, sibling, parent), second- (grandchild, uncle or aunt, niece or nephew, grandparent), third- (cousin, great grandparents, great grandchildren), or fourth-degree (second cousin, great-great grandparents, great-great grandchildren) relative.

I just had (or I am considering) a genetic test. Can my health insurer deny me health insurance or raise my premiums because of the results?

No. Under GINA, health insurers cannot use genetic information, including results of predictive genetic tests, to make eligibility and coverage decisions. Predictive genetic test results cannot be considered a pre-existing condition.

Can my health insurance company ask me to have a genetic test or ask to see my genetic test results?

In general, it is against the law for health insurers to ask for, require, or obtain genetic information about applicants or the individuals that they cover. An exception is that your health insurer can ask for genetic information to make a decision about whether or not they will pay for a requested test, treatment, or procedure, in order to determine your medical need for the service. In these situations, GINA only allows the insurer to ask for the minimum amount of information they need to help make a decision. Once they have the information, GINA also prevents them from using the information to discriminate against you.

Please visit our summary and full text sections  for more detailed information on the Genetic Information Nondiscrimination Act.