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[遗传性疾病症状前检测中的心理社会因素。亨廷顿舞蹈病咨询两年后的经验]

[Psychosocial aspects in presymptomatic testing for genetic diseases. Experiences after 2 years of counseling in Huntington disease].

作者信息

Blomhoff S, Malt U, Weisaeth L

机构信息

Psykosomatisk avdeling Rikshospitalet, Oslo.

出版信息

Tidsskr Nor Laegeforen. 1995 Jan 10;115(1):27-9.

PMID:7846655
Abstract

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.

摘要

作者描述了他们对28名寻求亨廷顿舞蹈症症状前检测者进行精神评估和心理社会咨询的经验。其中一半人在童年和青春期早期与患病的父母生活在一起。这些人中有9人至少患过一次精神疾病。在整个样本中,32%的人在评估时患有精神疾病。大多数人在检测过程中经历了重大的情绪困扰,但未观察到严重的精神反应。与检测相关的自杀念头最常出现在那些童年时期与患病父母有过极其负面经历的人身上。在一些被发现没有风险的人中,主要问题是因存活而产生的内疚感。未来基因技术可能性的心理社会和精神层面必须得到更严肃的对待。

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