Huntington's disease: Psychological aspects of predictive testing

Abstract

Predictive testing for Huntington's disease appears to have long lasting psychological effects. The predictive test for Huntington's disease (HD), a hereditary disease of the nervous system, was introduced in the Netherlands in the late eighties. As adverse consequences of the test were anticipated, the effects of testing were studied conscientiously. The general conclusions of these studies were that the negative effects of testing were limited and temporary. The positive consequences of testing seemed to outweigh the negative ones. Knowing if one carried the gene put an end to the unbearable uncertainty of becoming diseased in the future. Testing made it possible to make important decisions, such as concerning having children, pursuing further studies or buying a house. However, long-term investigation at the Leiden University Medical Centre (LUMC) now demonstrates that ten years after the test, when the first symptoms are likely to occur in the near future, the distress of carriers increases again. Strikingly, the current findings are based on a selection of psychologically more stable participants. Individuals who withdrew from the study directly after receiving an unfavourable test result reported (pre-test) considerably less well-being, a worse view of the future, and more evasive behaviour. It is expected that the psychological distress of these dropouts is even greater than that of the retained individuals. It is worrisome that these dropouts stay out of reach of further psychological counselling. Reinier Timman LUMC Centre for Human and Clinical Genetics, and dept. of Neurology