HIGHLIGHTS
SUMMARY
Methods: To capture these socio-psychological aspects of HD and map the experiences of affected individuals, persons at risk of HD, and caregivers, the authors created a questionnaire using a qualitative research approach. Physicians and healthcare professionals consulting families with HD should do their utmost to ensure that all family members obtain the necessary information to make an informed decision about genetic testing, reproduction, and future financial and life plans. Predictive testing should be reserved for adults who have participated in a thorough consultation with a genetic counsellor or other trained professional or HD . . .
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