Psychological impact of news of genetic risk for Huntington disease

Am J Med Genet. 2001 Oct 15;103(3):188-92. doi: 10.1002/ajmg.1538.abs.


A one-year longitudinal study was conducted investigating the psychological effects of the news of genetic testing for the Huntington disease (HD) gene. Participants were assessed at baseline (before obtaining news of test results) and at three, six, and 12 months after test results on stress-specific symptom measures. Among carriers of the HD gene, a considerable number (55%) showed evidence of neurological impairment at baseline, indicative of HD. Also noteworthy, these individuals had significantly higher psychological symptom scores at baseline than carriers without neurological impairment or noncarriers. Despite this, these individuals were no more aware of their carrier status at baseline than carriers without HD symptoms or noncarriers. Furthermore, the psychological symptom levels of HD carriers with neurological impairment remained elevated across the follow-up assessments. Results for noncarriers and carriers without HD neurological symptoms were consistent with the findings of previous studies indicating that news of genetic testing for the HD gene had limited detrimental impact. The clinical implications of the results are discussed.

Publication types

  • Clinical Trial
  • Comparative Study

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Female
  • Follow-Up Studies
  • Genetic Predisposition to Disease / genetics
  • Genetic Predisposition to Disease / psychology*
  • Genetic Testing / adverse effects
  • Genetic Testing / psychology*
  • Heterozygote
  • Humans
  • Huntington Disease / diagnosis
  • Huntington Disease / genetics*
  • Huntington Disease / psychology*
  • Interviews as Topic
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Nervous System Diseases / diagnosis*
  • Psychological Tests
  • Risk Factors
  • Stress, Psychological
  • Time Factors