To know or not to know: a review of behaviour and suicidal ideation in preclinical Huntington's disease

Patient Educ Couns. 2007 Mar;65(3):279-87. doi: 10.1016/j.pec.2006.08.009. Epub 2006 Sep 26.


Objective: At present, the problems associated with suicidal ideation and suicide in Huntington's disease (HD), worldwide, are much the same as 2 decades ago. This study seeks to investigate the psychological complications of predictive testing in HD at risk populations.

Methods: The key problems of predictive testing, fear of acquiring carrier status, psychological consequences, autonomy, and rights to know are discussed.

Results: This review (1) describes psychological affect and problems of persons facing the decision to test for HD, (2) discusses suicidal ideation, behaviour, and catastrophic events associated with predictive testing, (3) assesses ethical questions raised in the genetic counselling, (4) questions whether counsellors should promote or advocate predictive testing, and finally (5) discusses what professionalism actually is in genetic counselling.

Conclusion: The need for professional counselling, using a well designed protocol, and the importance of focusing on the suicide risk of participants in predictive testing programs are emphasized.

Practice implications: The counsellor has an obligation to provide adequate information. The professionals should not promote nor advocate presymptomatic DNA-testing. Depression, hopelessness, anxiety, emotional distress, suicidal tendencies, and social dysfunction grading should be considered in predictive testing of HD.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Adaptation, Psychological
  • Age of Onset
  • Attitude to Health
  • Fear
  • Genetic Carrier Screening / methods
  • Genetic Counseling / ethics
  • Genetic Counseling / methods
  • Genetic Counseling / psychology
  • Genetic Testing / ethics
  • Genetic Testing / methods
  • Genetic Testing / psychology
  • Health Services Needs and Demand / ethics
  • Health Services Needs and Demand / organization & administration
  • Humans
  • Huntington Disease / diagnosis
  • Huntington Disease / genetics*
  • Huntington Disease / prevention & control
  • Huntington Disease / psychology*
  • Patient Advocacy* / ethics
  • Patient Advocacy* / psychology
  • Practice Guidelines as Topic
  • Predictive Value of Tests
  • Risk Assessment
  • Risk Factors
  • Social Support
  • Suicide / prevention & control*
  • Suicide / psychology*
  • Truth Disclosure* / ethics