Genetic discrimination occurs when someone uses personal information about your genetic risks against you. This can include genetic testing information for an inherited disorder or for genetic disease risks. It can even include information about disorders or health conditions that run in your family (family history).
Two concerning types of discrimination involve health insurance and employment. Some individuals may choose not to have a genetic test because of concern that their health insurance premiums could increase or that they could lose their health insurance coverage just because they are at risk for a disease. Other individuals may worry that they could lose their jobs or be transferred if the management finds out about their genetic risk(s).
In May 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law. GINA provides protection against genetic discrimination by employers and health insurance companies.
Employers and health insurance companies cannot request or require genetic information including genetic tests or family history.
Employers cannot make any hiring or promotion decisions based on genetic information.
Health insurance companies cannot make any pricing or coverage decisions based on genetic information.
Genetic information cannot be considered a pre-existing condition.
It is important to remember that protections under GINA apply only to genetic risk information and not to a disease that is already present. For example, learning you are at risk to develop a health condition based on a genetic test or family history would be protected and could not be used against you. However, if you already have symptoms which could lead to diagnosis of the health condition, it is considered "manifest," or active disease, and GINA does not apply. Talk with your doctor or genetic counselor to learn more about how GINA applies to your individual situation.