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Genetic testing and counselling
D05 Childhood experiences of persons at risk for Huntington's disease
  1. L van der Meer1,
  2. E van Duijn1,2,
  3. A Tibben1
  1. 1Leiden University Medical Centre, Centre for Human and Clinical Genetics, Leiden, The Netherlands
  2. 2GGZ Delfland, Delft, The Netherlands


Background Persons who are at risk for Huntington's disease (HD) may have been exposed to higher than average amounts of negative life events in childhood, due to their parent's disease process. This may have consequences in later life and be associated with insecure attachment styles and inadequate patterns of emotion regulation.

Aims To investigate early experiences of persons at risk for HD.

Methods We explore early (<age 16 years) negative life events in persons at risk for HD, using the Negative Life Events Scale. We compare persons at risk for HD (n=63) with persons at risk for a genetic disorder that is not neuropsychiatric in nature, BRCA1/2 Hereditary Breast and Ovarian Cancer (n=100). Partners (n=97) are used as controls.

Results We find more early negative life events in the HD group than in the BRCA1/2 group. Both groups report more early negative life events than partners. In the HD group, we find higher frequencies of parental disease, psychiatric problems, divorce of parents, suicide attempt of parent, alcohol or drug abuse, domestic violence and sexual abuse, compared with the BRCA1/2 group and partners.

Conclusions Children raised in HD families are significantly more at risk of experiencing serious negative, threatening life events, the impact of which requires further study. Moreover, our findings may be kept in professionals' minds when counselling couples who wish to talk about the impact of HD in a family.

  • childhood experiences
  • negative life events

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