GINA: Talking with Patients

Summary: The Genetic Information Nondiscrimination Act (GINA) was created to remove barriers to the appropriate use of genetic services by the public. GINA protects individuals’ access to employment and health insurance by prohibiting companies from using genetic and family history information.

For more information on GINA see the overview.

BY JAX Clinical Education | November 2024

When to Talk about GINA with a Patient

• If the patient asks or expresses concern about privacy or use of genetic information, including family history information
• If you are proposing genetic testing
• If the patient is requesting genetic testing

GINA and the Affordable Care Act

The Affordable Care Act (ACA) is separate legislation, but intersects with GINA in certain ways:

• The ACA seeks to improve coverage for Americans and provides health insurance coverage to the uninsured, whereas GINA seeks to prevent discriminatory treatment.
• The ACA protects consumers from coverage or rate setting due to pre-existing medical conditions. This includes medical conditions that are caused by an underlying genetic variant.
• GINA protects against health insurance companies using genetic information, such as genetic predisposition to develop a medical condition, from coverage or rate setting decisions.

Talking Points

Suggestions for discussions with your patients

General Information

Insurers often use information they can legally collect about patients to make decisions about if they will provide coverage or the rates they will charge. 

There is a law – the Genetic Information Nondiscrimination Act, GINA for short – that protects you from misuse of genetic information in health insurance and employment. Genetic information includes family medical history and the results of genetic tests.

GINA does not affect how we practice medicine. It affects health insurance practice and it affects employers.

GINA prevents health insurers and employers from using your genetic test results or family history information against you to make certain key decisions. Specifically, they cannot use this information to

• set prices or decide whether you get health insurance, or
• make decisions about hiring, firing, job assignments, or promotions.

The law does not mean that health insurers have to pay for genetic services or genetic tests. It protects the information acquired through the use of those services and tests.

GINA and other laws keep your health information private. This includes genetic information. There are only limited circumstances where an employer or health insurer can lawfully request or obtain genetic information from me or from this office. But even if they do obtain the information, it is illegal for them to use it against you.

If your Patient Already has a Diagnosed Genetic Condition

Under our current health insurance system, health insurers often base their decisions on your current symptoms and diagnoses. GINA doesn’t prohibit insurers from using information about your your current or past health condition – even if that condition has a genetic basis. Instead, this is protected under the current Affordable Care Act.

If you share this information with undiagnosed family members, GINA does protect them because your health is part of their family medical history.

GINA and Family History

It’s important for me to know about any diseases that have occurred in your family members, and it’s important to share with me genetic information about your family members.

It is important that you provide complete family history information because that will help me provide the best care I can.

Your family history information is protected under law and cannot be used by health insurers or employers to discriminate against you.

[Stop here if genetic testing is not an issue.]

When Considering Genetic Testing

Some genetic tests can help predict whether a person will develop certain types of conditions. Sometimes people are worried that information about their risk of developing a disease, or the risk that other family members could develop that disease, will be used against them in some way.

GINA makes it illegal for health insurers and employers to use the results of genetic tests in setting rates or assessing eligibility for health insurance coverage. GINA also makes it illegal for employers to use that information against you in hiring, firing, promotion, or other job decisions.

Under our current system, health insurers can base their decisions about eligibility and rates using your actual health status. So, if a person already has a diagnosed disease or condition, a health insurer can use that health information to make decisions about coverage and rates – even if the disease has a genetic basis. This, however, is currently protected under the Affordable Care Act.

GINA does not cover life insurance, disability or long-term care, although some states do have protections in place for people considering these types of insurance. It also does not apply to employers with fewer than 15 employees and does not offer these employment protections to members of the US military.

Editor’s note

This resource was developed under a grant from The Pew Charitable Trusts.

Disclaimer

All information in this resource is provided for educational purposes only.