Genetic Information Non-Discrimination Act

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects Americans from discrimination by health insurance companies and employers based on their genetic information. This law does not cover life insurance, disability insurance or long-term care insurance.

Key points of this act include the following:

Health Insurance Protections

Health insurance companies may not use genetic information either collected with intent, or incidentally, to make eligibility, coverage, underwriting, or premium-setting decisions.

  • May not require an individual or an individual’s family member to provide their genetic information
  • May not request or require an individual or individual’s family member to take a genetic test
  • May not consider genetic information as a pre-existing condition
  • May require genetic information to determine coverage on specific claims. For example, the insurer may request information about an individual’s HCM status to determine coverage for prophylactic ICD implant

GINA does not cover a disease that has already been diagnosed; it only protects an individual’s predictive genetic information. For example, an individual can be denied coverage based on their existing cardiomyopathy diagnosis but not on the results of a genetic test that confirms their disease.

GINA protects the family members of the diagnosed individual from denial of coverage based on the individual’s symptoms or results of a genetic test that confirms the disease. For example, the diagnosed individual’s sibling or child cannot be denied coverage.

The health insurance provisions of GINA do not apply to:

  • Members of the United States military
  • Veterans obtaining health care through the Veteran’s Administration
  • Individuals using the Indian Health Service
  • Federal employees enrolled in the Federal Employees Health Benefits program
  • Employees working in companies with fewer than 15 employees.

Employment Protections

An employer may not use genetic information in making decisions regarding hiring, firing, job assignments or promotions. They may not request, require or purchase genetic information about an employee or family member.

For more information about GINA, please visit the National Human Genome Research Institute and Coalition for Genetic Fairness.

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