Huntington's Disease Genetic Test (cont.)
Is the Test Accurate?
Although this test is highly reliable, no test is 100% accurate. Also, if you test positive, the test can't tell you when you will develop Huntington's disease or how quickly the disease will advance.
Should I Be Tested?
The decision to take the test for Huntington's disease is personal. You may have emotional, financial, and family reasons for taking or not taking the test.
You might choose to be tested because:
- You want to know whether you will get the disease so you can prepare yourself and your family if your test is positive. You might choose, for example, to set up financial arrangements in a certain way or change other life plans.
- You want to know because the results will affect whether you marry or have children.
- You think the anxiety of not knowing whether you will get the disease is worse than the certainty of knowing that you will get it.
- Your health insurance will pay for all or most of the test. Or, you can afford to pay for the test yourself.
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.