Ethical aspects of undergoing a predictive genetic testing for Huntington's disease

被引：7

作者：

Andersson, Petra Lilja ^{[1
]}

Juth, Niklas ^{[2
]}

Petersen, Asa ^{[1
]}

Graff, Caroline ^{[2
]}

Edberg, Anna-Karin ^{[3
]}

机构：

[1] Lund Univ, SE-22100 Lund, Sweden

[2] Karolinska Inst, S-10401 Stockholm, Sweden

[3] Kristianstad Univ, Kristianstad, Sweden

来源：

NURSING ETHICS | 2013年 / 20卷 / 02期

关键词：

Case study; ethics; Huntington's disease; life history; presymptomatic genetic test; support; AGE-OF-ONSET; DECISION-MAKING; FAMILY; DIAGNOSIS; PARTNERS; SYMPTOMS; REPEAT; LENGTH; SYSTEM; IMPACT;

D O I：

10.1177/0969733012452686

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington's disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation.

引用

页码：189 / 199

页数：11

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