Protection Against Genetic Discrimination

What is genetic discrimination?

Genetic discrimination happens when someone is treated differently or unfairly because of their genetic information. 

Genetic information includes:

• Results of genetic testing
• Family history of genetic conditions
  
• A patient’s participation in genetic research studies
  
• The use of genetic services or genetic counseling  

With an increase in the use of genetic testing, more laws are being passed worldwide to help prevent genetic discrimination and protect privacy. 

Genetic Information Nondiscrimination Act (GINA) 

In the United States, the Genetic Information Nondiscrimination Act (GINA) is a federal law that protects people from employment and health insurance discrimination based on genetic information. 

Genetic discrimination in health insurance

GINA states that it is against the law for health insurance companies to:

• Use genetic information to make decisions about insurance coverage or premium rates  
• Request or require genetic testing
  
• Consider genetic information or family history as a pre-existing condition
  

Genetic discrimination in employment

GINA states that it is against the law for employers with 15 or more employees to:

• Make hiring, firing, pay, or promotion decisions based on a person’s genetic information
• Request or require genetic information or genetic testing  
  

What GINA does not protect 

GINA does not protect against discrimination based on genetic information in all circumstances or settings. It also does not apply to small businesses with fewer than 15 employees. It also does not apply to people insured through the military or federal government, such as Tricare or the Indian Health Service.

Protections not covered under GINA include:

• Life insurance, long-term care insurance, or disability insurance: GINA only offers protection for health insurance. It does not apply to other types of insurance. It is possible that these types of insurance companies might ask about genetic information or use the information to decide whether or not to give you insurance coverage.
• Existing medical conditions: GINA does not protect people against possible discrimination by insurance companies based on the presence of a medical condition that could already be detected or diagnosed. 
  

In the U.S., some states have laws that provide additional protections related to genetic discrimination. Visit the Genome Statue and Legislation Database for information on legislation related to genetic topics including employment discrimination, insurance discrimination, research, and privacy.

Find more information

• GINAhelp.org | Genetic Alliance
  
• National Human Genome Research Institute | National Institutes of Health
• Genetic Information Discrimination | U.S. Equal Employment Opportunity Commission
• Genetic Information State Laws | Triage Cancer® 
  

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