PMID: 9182776Jun 27, 1997Paper

Long-term impact of Huntington disease linkage testing

American Journal of Medical Genetics
C A Taylor, R H Myers

Abstract

We performed a long-term follow-up of Huntington disease (HD) predictive testing (an average of 6 years post-test) for 16 of 20 people who received informative linkage test results. Although no pre-test or baseline psychological differences were noted between those with an increased versus a decreased risk of HD, the long-term impact was dramatically different in these two groups. The low-risk group reported less uncertainty, anxiety or worry, fear, and worry about children's risk, whereas the high-risk group reported either the same or increased concern in these areas. Those at low risk also acknowledged an increased sense of control and self-esteem, whereas those at high risk reported decreases or no changes. One high-risk individual reported chronic depression that had occurred since the testing. Additionally, those at low risk reported greater reliance and faith in spiritual or religious beliefs than those at high risk. The emotional impact of HD genetic testing justifies the continued utilization of pre- and post-test counseling protocols. Pre-test counseling should include discussion of the known risks and benefits of predictive testing, with special emphasis on the participant's expectations for future change and improve...Continue Reading

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Citations

Feb 18, 2005·NeuroRx : the Journal of the American Society for Experimental NeuroTherapeutics·Richard H Myers
Dec 22, 1999·American Journal of Medical Genetics·S K Sobel, D B Cowan
Apr 2, 2004·American Journal of Medical Genetics. Part a·Fiona Richards, Katrina Williams
Mar 5, 2005·Stroke; a Journal of Cerebral Circulation·M J H WermerG J E Rinkel
Apr 30, 2015·Journal of Genetic Counseling·Jesús Rivera-NavarroNatividad Mariscal
May 3, 2007·Journal of Genetic Counseling·Robert KlitzmanKaren Marder
Jul 16, 2008·American Journal of Medical Genetics. Part a·Claudia LickledererJürgen Barth
Jun 10, 2005·European Journal of Human Genetics : EJHG·Erynn S GordonEric P Hoffman
Jun 25, 1999·Image--the Journal of Nursing Scholarship·J K WilliamsC Forcucci
Sep 17, 2003·Clinical Genetics·E W AlmqvistUNKNOWN Canadian Collaborative Study of Predictive Testing
May 14, 2016·American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics·Martha A Nance

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