GINA: Talking with Patients

In May 2008,  the Genetic Information Nondiscrimination Act (GINA) was signed into law. All aspects of the law were in effect as of November 2009. Additionally, GINA amends HIPAA to clarify that genetic information is health information.

• GINA was created to remove barriers to the appropriate use of genetic services by the public.
• GINA protects individuals from the misuse of genetic information in health insurance and employment.

For more information on GINA see the overview.

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 health legislation enacted in March 2010 intersects with GINA in certain ways, as follows:

The ACA seeks to improve coverage for Americans and provides health-insurance coverage to the uninsured, whereas GINA seeks to prevent discriminatory treatment.

The health insurance legislation will provide access to care to some individuals not helped by GINA, such as those with manifest genetic conditions.

Suggestions for Discussions with Your Patients

General Information

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. I can review other types of genetic information with you, if you wish.

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. For example, 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 tries to keep your information private. 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 DISORDER

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 condition – even if that condition has a genetic basis.

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 the new law and cannot be used by health insurers or employers to discriminate against you. [Stop here if genetic testing is not an issue.]

If genetic testing is possible or recommended

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 to use the results of genetic tests against you. For example, they can’t use that genetic information in setting rates or eligibility for health insurance policies. 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 on 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.

Editor note

This resource was developed under a grant from The Pew Charitable Trusts. Copyright 2010 by Genetic Alliance, Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics. The Jackson Laboratory is providing access to, maintaining, and updating the information as needed. Permission is granted under the copyright for educational, non-commercial use of these materials. All other uses require permission of the copyright holders.

Reviewed June 2023