[Psychosocial aspects in presymptomatic testing for genetic diseases. Experiences after 2 years of counseling in Huntington disease].
The authors describe their experience from the psychiatric assessment and psychosocial counselling of 28 persons who sought presymptomatic testing for Huntington's chorea. Half of the persons had lived with a disease-affected parent during childhood and early adolescence. Nine of these persons had suffered from a psychiatric disorder at least once. Of the whole sample, 32% had a psychiatric disorder at the time of the assessment. Most persons experienced major emotional distress in relation to the testing but severe psychiatric responses were not observed. Suicidal ideation in relation to the testing was most often reported by persons who had had extremely negative experiences during childhood with their own affected parent. In some persons who were found to be free of risk, the main problem was guilt owing to survival. The psychosocial and psychiatric aspects of the possibilities of gene technology in the future must be addressed more seriously.
Blomhoff
S
S
Psykosomatisk avdeling Rikshospitalet, Oslo.
Malt
U
U
Weisaeth
L
L
D000328:Adult; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D012307:Risk Factors; D012944:Social Support
Psykososiale aspekter ved presymptomatisk testing for genetisk sykdom. Erfaringer etter to års veiledning ved Huntingtons sykdom.