Research in Progress

Cognitive, Emotional, and Rehabilitative Aspects of HD

Negative Consequences of Predictive Testing for HD

A study featured at the 2003 World Congress on Huntington’s Disease, entitled “Adverse Effects of Predictive Testing for Huntington Disease Underestimated: Long Term Effects 7-10 years after the test,” focused on the long-lasting adverse effects of predictive testing for HD. Researchers originally assumed that there would be few harmful consequences associated with predictive testing, but a new study conducted in the Netherlands showed that this is simply not the case. Unlike previous studies, this one evaluated the impact of genetic test results on HD allele carriers and non-carriers over a period of 7-10 years, as opposed to only one or a few years. Researchers gave approximately seven questionnaires to 142 individuals (and 104 of their partners) whose predictive test results had indicated that they were at risk for HD. While carriers and their partners were more distressed right after learning the test results, their outlook improved over a 2-3 year period. However, mood once again declined as the at-risk individuals approached the age of onset. Non-carriers, as expected, expressed relief after their test results came back, and their outlook soon returned to normal.

For a listing of the research posters presented at the 2003 World Congress on Huntington’s Disease, please click here. Look for more about genetic testing and its implications in an upcoming section of the website.

Last Modified: 04/12/2007

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