Genetics Discrimination

This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.

Introduction

Genetic discrimination occurs when people are treated differently because they have (or may have) a genetic predisposition to disease.

For a more in-depth discussion of genetic discrimination, please visit the National Human Genome Research Institute’s (NHGRI) website, which includes information on GINA, implications of GINA, employee wellness programs, and related laws.

Examples that relate to concerns of genetic discrimination:

• Sally has a family history of breast cancer thus she decides to have genetic testing to find out if she is at higher risk of developing breast cancer. When the genetic test identifies her as being “high risk” for developing cancer, her life insurance company doubles her insurance premium.
• Tim has been with a computer company for two years. He is on a team of technicians that goes to client’s companies to troubleshoot their computer problems. Tim’s father is going blind presumed secondary to a genetic condition. Worried that Tim will also start to go blind, Tim’s employer changes his work assignment. Tim is no longer on the troubleshooting team; instead, he is told to stay at the home office and answer phones at the receptionist desk. Tim’s boss thinks this is best because if Tim were to also go blind, this would be a job that Tim could do.
• Leslie’s company has an insurance plan with a wellness program. The wellness program encourages people to adopt healthy behaviors, such as not smoking, eating healthy, and exercising. The wellness program gives everyone a $50 deduction off their insurance premiums if they do certain wellness activities, such as visiting the primary care provider once a year. The wellness program also wants to give everyone a $200 deduction who has genetic testing through their program. The genetic testing will identify people who are at higher risk for certain illnesses. Leslie doesn’t want to have the test, but cannot afford to NOT have the testing if it means missing out on a $200 deduction.

Fear of discrimination can impact a person’s decision to obtain seek genetic medical care or genetic testing. Because of worries about genetic discrimination, the US enacted the Genetic Information Nondiscrimination Act of 2008 (GINA). More information on GINA can be found on the National Human Genome Research Institute (NHGRI) webpage about genetic discrimination.

GINA generally prohibits health insurance companies from using an individual’s (or their family’s) genetic information for decisions regarding coverage, rates, or preexisting conditions. GINA also prohibits most employers from using genetic information for hiring, firing, or promotion decisions, and for any decisions regarding terms of employment. Exceptions to GINA include many small employers, military service members, federal employees, or the Indian Health Service.

Legislation and Regulation

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Policy Positions