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Huntington's Disease Genetic Test (cont.)

IN THIS ARTICLE

Why Would I Not Be Tested?

You might choose not to be tested because:

  • News of a positive result (meaning you have the changed gene) would be devastating. You prefer to live without knowing that you will some day get Huntington's disease.
  • You are concerned about how the results would affect your relationships. If you test negative (you do not have the changed gene), you may feel guilty if your brother, sister, or child tests positive. Or you may feel angry if you test positive and your relatives do not.
  • The test is expensive, and you do not have health insurance or you know your insurance would not pay for it.
  • You are concerned about the possibility of facing discrimination at work or with future health insurance if your insurance pays for the test. Many people worry that genetic information released to insurance companies may affect future employment options or the cost or availability of insurance. But a law in the United States, called the Genetic Information Nondiscrimination Act of 2008 (GINA), protects people who have DNA differences that may affect their health. GINA prevents employers and health insurance companies from using DNA information about people to affect decisions. This law does not cover life insurance, disability insurance, or long-term care insurance.
  • You think there is no point in knowing now because there would be nothing you could do with lifestyle or treatment to prevent the disease.

Other Places To Get Help

Organization

Huntington's Disease Society of America
505 Eighth Avenue
Suite 902
New York, NY 10018
Phone: 1-800-345-HDSA (1-800-345-4372)
(212) 242-1968
Fax: (212) 239-3430
Email: hdsainfo@hdsa.org
Web Address: www.hdsa.org

The Huntington's Disease Society of America is dedicated to improving the lives of people who have Huntington's disease and their families. It promotes and supports research and medical efforts to eradicate Huntington's disease and assists families affected by it to cope with the problems it can cause. The Society also provides materials to educate the public and health professionals about Huntington's disease.


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