Reverse pre-symptomatic testing for Huntington disease: double disclosure when 25% at-risk children reveal the genetic status to their parent

Predictive testing for Huntington disease (HD) in 25% at-risk individuals is testing with full knowledge, and sometimes assuming, that the parent does not want to know his status. The goal of this study was to understand: (1) the differences in the motivation between 25% and 50% at-risk individuals...

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Bibliographic Details
Published in:European journal of human genetics : EJHG 2019-01, Vol.27 (1), p.22-27
Main Authors: Bonnard, Adeline, Herson, Ariane, Gargiulo, Marcela, Durr, Alexandra
Format: Article
Language:English
Subjects:
Adult
Child
Children
Disclosure
Genetic Carrier Screening
Genetic Carrier Screening - ethics
Genetic Carrier Screening - methods
Genetic Counseling
Genetic Counseling - psychology
Humans
Huntington Disease
Huntington Disease - diagnosis
Huntington Disease - genetics
Huntington Disease - psychology
Huntington's disease
Huntingtons disease
Life Sciences
Motivation
Parent-Child Relations
Parents
Parents - psychology
Side effects
Suicide
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Summary:Predictive testing for Huntington disease (HD) in 25% at-risk individuals is testing with full knowledge, and sometimes assuming, that the parent does not want to know his status. The goal of this study was to understand: (1) the differences in the motivation between 25% and 50% at-risk individuals to be tested and (2) the consequences of "double disclosure", including parental reactions. Test requests from 25% at-risk individuals were rare (155/1611, 10%). We compared their motivation with those of 1456 50% at-risk individuals. The principal motivation to have the test for both groups was "to know" (48% versus 58%, p = 0.049), but the desire to have children was more frequent in the 25% at-risk group (32% versus 17%, p 
ISSN:1018-4813
1476-5438
DOI:10.1038/s41431-018-0255-7