Why adults at risk for Huntington's choose not to learn if they inherited deadly gene

ScienceDaily | 5/16/2019 | Staff
chrismpotts (Posted by) Level 3
Understanding the "why" matters as new clinical trials testing therapies for people who haven't yet developed symptoms of Huntington disease requires participants to be tested for the HD gene to be included in the trials.

The study, published today in Clinical Genetics, also suggests that individuals who have chosen not to be tested can benefit from supportive counseling, which is not usually offered.

Health - Care - Providers - Individuals - Risk

"Health care providers really need to help individuals at risk for Huntington's disease think through their decision whether or not to participate in a clinical trial that requires testing," says the study's lead investigator, Karen E. Anderson, MD, an associate professor of psychiatry & neurology at Georgetown University Medical Center. "For someone who has not wanted genetic testing for many years, we may be leading people to do a test that has not been and still may not be in their personal interest."

She says, "For those who want testing and are ready to cope with the result, either positive or negative, it is our duty to help them get this information so they can make decisions about future care, financial planning and, possibly, study participation. For those who are not ready to be tested, or never want testing, we need also to support their choices," says Anderson, who is also director of Huntington's Disease Care, Education & Research Center, a joint program of Georgetown University and MedStar Georgetown Hospital.

Disease - Degeneration - Nerve - Cells - Brain

The disease produces progressive degeneration of nerve cells in the brain, which affects the ability to move and think, and often results in depression and other psychiatric disorders due to functional changes in the brain.

To date, there is no cure for the disease and no way to prevent its onset. It is always fatal. People who have the HD genetic mutation expansion will develop HD (unless they die of other causes...
(Excerpt) Read more at: ScienceDaily
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