Professional Ambivalence: Accounts of Ethical Practice in Childhood Genetic Testing
Professional Ambivalence: Accounts of Ethical Practice in Childhood Genetic Testing
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DOI：
10.1007/s10897-008-9201-0
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发表时间：
2009-04-01
影响因子：
1.9
通讯作者：
Clarke, Angus
中科院分区：
文献类型：
--
作者：
Arribas-Ayllon, Michael;Sarangi, Srikant;Clarke, Angus
儿童基因检测给家庭和专业人士带来了复杂的伦理和道德困境。在家庭领域，沟通的作用是在成人和儿童之间传递“遗传责任”的关键方面。在专业领域，遗传责任是一种相互作用的成就，它产生于有时相互竞争的观点，即什么是孩子的“最佳利益”，一方面是与父母的偏好有关，另一方面是与专业判断有关。在本文中，我们将以前的研究扩展到儿童基因检测的父母账户，并在研究访谈中探讨专业人员的伦理账户。与参与儿童及其家庭遗传诊断和管理的专业从业人员进行了访谈（n=20）。我们首先确定了四个相互关联的主题——父母权利与孩子自主性的并置、孩子自主性的激发、父母责任的回避和对职业不确定性的认识。然后，使用修辞话语分析，我们考察了话语手段的范围，通过这些话语手段，伦理叙述被情境化地说明：对比、间接引语、构建对话、人物和事件工作。在这些道德描述中，一个重要的手段是使用极端案例场景，将困境重建为职业行为的理由。在承认矛盾心理的同时，我们的分析表明，专业判断不是执行道德原则的简单问题，而是管理与父母和孩子互动的实际情况和后果。我们的结论是，需要更多的关注来理解专业从业者对道德实践的判断方式。
Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of 'genetic responsibility' between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from the sometimes competing views over what constitutes the 'best interests' of the child in relation to parental preferences on the one hand, and professional judgements on the other. In the present paper we extend our previous research into parental accounts of childhood genetic testing and explore the ethical accounts of professionals in research interviews. Interviews (n=20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four interrelated themes-juxtaposition of parental rights vis-a-vis child's autonomy, elicitation of the child's autonomy, avoidance of parental responsibility and recognition of professional uncertainty. Then, using Rhetorical Discourse Analysis, we examine the range of discourse devices through which ethical accounts are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An overarching device in these ethical accounts is the use of extreme case scenarios, which reconstruct dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis suggests that professional judgement is not a simple matter of implementing ethical principles but rather of managing the practical conditions and consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners formulate judgements about ethical practice.