Arribas-Ayllon Michael, Sarangi Srikant, Clarke Angus
ESRC Centre for Economic and Social Aspects of Genomics, Cardiff University, Cardiff, Wales, UK.
J Genet Couns. 2009 Apr;18(2):173-84. doi: 10.1007/s10897-008-9201-0. Epub 2009 Feb 10.
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 inter-related themes-juxtaposition of parental rights vis-à-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.
儿童基因检测给家庭和专业人士都带来了复杂的伦理和道德困境。在家庭层面，沟通的作用是成年人与儿童之间传递“基因责任”的关键方面。在专业领域，基因责任是一种互动成果，它源于有时相互冲突的观点，一方面是关于相对于父母偏好而言什么构成儿童“最大利益”的观点，另一方面是专业判断。在本文中，我们扩展了之前关于父母对儿童基因检测看法的研究，并在研究访谈中探讨了专业人士的伦理观点。我们对参与儿童及其家庭基因诊断和管理的专业从业者进行了访谈（n = 20）。我们首先确定了四个相互关联的主题——父母权利与儿童自主权的并列、儿童自主权的引出、父母责任的规避以及对专业不确定性的认识。然后，我们使用修辞话语分析方法，研究了通过哪些话语手段在具体情境中阐述伦理观点：对比、引述话语、构建对话、人物和事件塑造。这些伦理观点中的一个总体手段是使用极端案例场景，将困境重构为专业行为的正当理由。虽然承认存在矛盾心理，但我们的分析表明，专业判断并非简单地执行伦理原则，而是管理与父母和儿童互动的实际情况及后果。我们得出结论，需要更多关注来理解专业从业者对伦理实践进行判断的方式。
