Huntington's disease, an inherited autosomal dominant disorder, affects 50 percent of children who have one parent with the disease, according to the Merck Manual. Huntington's disease causes progressive deterioration of the ability to think and move, starting between ages 35 and 50 and ending in death 13 to 15 years after symptom onset. About 30,000 people in the United States have Huntington's disease, with 150,000 more at risk of developing the disease, the Huntington's Disease Society of America reports. Genetic testing to predict the possibility of developing Huntington's disease can help people better plan their lives.
Ending of Uncertainty
The stress of uncertainty about whether or not a person will develop Huntington's disease can have a major negative impact on her life. Although receiving a negative result naturally provides great relief and improvement in mental outlook, a study reported by lead author Sandi Wiggins and reported in the 1992 New England Journal of Medicine indicates that even people whose result comes back positive have a lower risk of depression and a greater sense of psychological well-being. People who test negative also experience relief from knowing that their children won't inherit the disease, reports lead author and registered nurse Janet Williams, Ph.D., in the September 2000 Online Journal of Issues in Nursing.
Ability to Plan
Knowing whether or not a person has the Huntington's disease gene allows him to plan for the future, whether the questions involve having children, career choices, marriage or the ability to dictate treatment and placement choices when the time comes. The Canadian Collaborative Study of Predictive Testing reported in the New England Journal of Medicine noted that the ability to plan for the future, establish a support system and become more aware of overall health were seen as positive benefits of testing.
Participation in Clinical Trials
Though no cure for Huntington's disease exists, continued research may eventually bring the opportunity to participate in clinical trials or experimental medications only available to those who test positive for the disease. Participation in clinical trials often involves additional medical surveillance and closer health monitoring than most people receive, the Fox Chase Cancer Center reports.
References
- "New England Journal of Medicine": The Psychological Consequences of Predictive Testing for Huntingtons Disease; Sandi Wiggins et al; 1992
- Merck Manual: Huntington's Disease
- Fox Chase Cancer Center: Weighing the Benefits and Drawbacks of Clinical Trials
- "The Online Journal of Issues in Nursing": Genetic Testing and Mental Health: The Model of Huntington Disease
- "American Journal of Medical Ethics": Psychological Costs and Benefits of Predictive Testing for Huntington's Disease; A Coteri; 2005
