On November 21, 2009, Title II Genetic Information Non Discrimination Act (GINA), which was signed into law last May, takes full effect.

GINA protects individuals from genetic information discrimination in health insurance and employment. These protections will apply to residents of all 50 US States and territories. The health insurance provisions of the bill, Title I, became effective 12 months after the date of signing, on May 21, 2009.  Title II of the Genetic Information Nondiscrimination Act (GINA) outlines unlawful activities for an employer, employment agency, labor organization, or training program in the use of genetic information. HDSA celebrates this monumental event as the product of dedicated advocacy and perseverance.

At a Glance

The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers. GINA makes it illegal for health insurance companies to deny coverage or to charge a higher rate or premium to an otherwise healthy individual found to have a genetic predisposition to a disease or disorder. GINA also makes it illegal for employers to use an employee's genetic information when making employment decisions such as hiring, firing, promotions, or any other terms of employment.

Where GINA Applies

·        Group Health Insurance

·        Individual Health Insurance

·        Medicare

Where GINA DOES NOT Apply

·        Long Term Care Insurance

·        Disability Insurance

·        Life Insurance

·        Insurance for Military personnel/V.A. beneficiaries

GINA offers significant protection, but those who are at risk should still carefully consider the use of genetic services. HDSA strongly recommends individuals considering genetic tests to speak with a trained genetic counselor both before and after testing. Taking a genetic test for HD is a very personal decision with outcomes that should be given much thought before the test.

Click here to learn more about GINA.