Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals

Patient Educ Couns. 1998 Sep;35(1):15-26. doi: 10.1016/s0738-3991(98)00086-x.


About a decade ago the introduction of predictive testing for Huntington's disease (HD) was an important milestone in medical history. The aim of the present paper concerning predictive DNA-testing for HD is fourfold. First of all it describes the professional challenge of elaborating an adequate test protocol and of permanently using a multidisciplinary approach to deal with predictive test requests. Secondly the paper is aimed at unraveling the factors that play a part in uptake and decision making regarding predictive testing. Hereby the Health Belief Model is used as a framework for understanding differences between tested and untested persons. Thirdly the impact of the test result on psychological well-being is reviewed. Finally this paper assesses the utilisation of prenatal diagnosis after predictive testing for HD and reflects on the psychological and ethical implications of different types of prenatal tests, including preimplantation genetic diagnosis.

Publication types

  • Review

MeSH terms

  • Adult
  • Decision Making
  • Ethics, Medical
  • Female
  • Genetic Testing / methods*
  • Genetic Testing / psychology
  • Humans
  • Huntington Disease / diagnosis*
  • Huntington Disease / genetics
  • Huntington Disease / psychology
  • Pedigree
  • Predictive Value of Tests
  • Pregnancy
  • Prenatal Diagnosis / methods*
  • Prenatal Diagnosis / psychology
  • Risk Factors