Article
LQTS parents' reflections about genetic risk knowledge and their need to know or not to know their children's carrier status.
Journal of genetic counseling - 1 Dec 2014
Mangset Margrete, Hofmann Bjørn
Abstract excerpt
Long QT syndrome (LQTS) is a contributor to unexplained deaths in infants (SIDS), children, teenagers and young adults. A gene test result may allow for individual tailored treatment, but also pose a burden of knowing one's carrier status, with no treatment recommendation. Genetic risk knowledge in the case of LQTS can promote adjustment and coping, but also fear anxiety, ambivalence and moral dilemmas. This...
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