Voicing the lifeworld: Parental accounts of responsibility in genetic consultations for polycystic kidney disease
Voicing the lifeworld: Parental accounts of responsibility in genetic consultations for polycystic kidney disease
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DOI：
10.1016/j.socscimed.2010.06.040
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发表时间：
2011-06-01
影响因子：
5.4
通讯作者：
Verrier-Jones, Kate
中科院分区：
文献类型：
--
作者：
Clarke, Angus;Sarangi, Srikant;Verrier-Jones, Kate
当身为遗传病携带者或受遗传疾病影响的父母就子女面临的健康风险做出决定时，可能需要考虑多种因素。这些可能包括医疗福利、父母自己了解自己基因状况的经历，以及孩子未来的自主性。卫生专业人员面临的挑战是，解释对儿童进行检测可能带来的负担和好处，同时促进家庭内部就遗传性疾病的风险进行公开交流。虽然遗传咨询本身并不构成决策，但父母仍然要对他们的行为和决定负责，以显示父母的责任。在本文中，我们探讨了父母在遗传咨询中的会计实践，重点讨论了他们如何清楚地表达他们对高危儿童检测常染色体显性多囊肾病(PKD)的责任，以及围绕检测过程和检测结果披露的沟通问题。基于来自英国的八个基因咨询的录音和转录，并借鉴修辞语篇分析，我们的发现表明：(I)父母倾向于突出他们实际的生活世界考虑，以证明他们的决定行为是正确的；以及(Ii)父母对专业人士提供的信息和建议的回应方式有相当大的差异。受影响的父母经常表示，他们对生活世界的担忧超过了他们的孩子可能获得的长期健康好处，至少目前是这样。(C)2010爱思唯尔有限公司。保留所有权利。
When parents, who are carriers of or are affected by a genetic disorder, make decisions about the health risks faced by their children, there may be multiple factors to consider. These may include the medical benefits, the parents' own experiences of learning about their genetic status, and the future autonomy of the child. Health professionals face the challenge of explaining the possible burdens as well as benefits of testing children, while promoting open communication within families about the risk of an inherited condition. While genetic consultations do not in themselves constitute decision making, parents nevertheless account for their actions and decisions in an attempt to display parental responsibility.In this paper we explore the accounting practices of parents in genetic consultations, focusing on how they articulate their responsibility with regard to testing their at-risk children for autosomal dominant polycystic kidney disease (PKD) and the communication issues surrounding the testing process and the disclosing of test results. Based on eight audio-recorded and transcribed genetic consultations from the UK, and drawing upon rhetorical discourse analysis, our findings suggest that (i) parents tend to foreground their practical 'lifeworld' considerations to justify their decisional actions; and (ii) there is considerable variation in the ways in which parents respond to information and advice offered by the professionals. The affected parent often presents their lifeworld concerns as outweighing, at least for the present moment, the longer term health benefits that might accrue to their children. (C) 2010 Elsevier Ltd. All rights reserved.