How Does a Person Decide Whether to be Tested?

How Does a Person Decide Whether to be Tested?

Information provided by the
National Institute of Neurological Disorders and Stroke
National Institutes of Health

The anxiety that comes from living with a 50 percent risk for HD can be overwhelming.

How does a young person make important choices about long-term education, marriage, and children?

How do older parents of adult children cope with their fears about children and grandchildren?

How do people come to terms with the ambiguity and uncertainty of living at risk?

Some individuals choose to undergo the test out of a desire for greater certainty about their genetic status. They believe the test will enable them to make more informed decisions about the future. Others choose not to take the test. They are at peace with being at risk and with all that that may entail.

There is no right or wrong decision, as each choice is highly individual. The guidelines for genetic testing for HD, discussed in the previous section, were developed to help people with this life-changing choice.

Whatever the results of genetic testing, the at-risk individual and family members can expect powerful and complex emotional responses. The health and happiness of spouses, brothers and sisters, children, parents, and grandparents are affected by a positive test result, as are an individual's friends, work associates, neighbors, and others.

Because receiving test results may prove to be devastating, testing guidelines call for continued counseling even after the test is complete and the results are known.