Genetic Testing and Insurance Issues

Insurance discrimination is a concern raised by some people considering presymptomatic testing for HD. Below we highlight an important law that protects against certain types of insurance discrimination.  In addition, we provide information about obtaining life, disability, and/or long-term care insurance PRIOR to pursuing presymptomatic genetic testing.

Genetic Information Non-Discrimination Act (GINA)

The Genetic Information Non-discrimination Act (GINA) of 2008 provides some security against employment and medical insurance discrimination. GINA protects against discrimination in those who have had positive genetic testing but are not yet showing symptoms of HD. GINA doesn’t apply to the military and Indian reservations.

Resources to learn more about GINA:

Life, Disability and Long Term Care Insurance

GINA does not cover life, disability, or long term care insurance which are often of some concern to people in families with HD. Patients are encouraged to be comfortable with their life, disability, and/or long term care insurance PRIOR to pursuing presymptomatic genetic testing. To learn more about different types of insurance visit Life Happens a national nonprofit supported by the insurance industry to educate the public about insurance. 

Life Insurance

American Council of Life Insurers

Disability Insurance

National Association of Health Underwriters

Long Term Care Insurance

HDSA article on long term care and HD (PDF – 4 pages)
American Association for Long Term Care Insurance