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Stories in Decisions: How At-Risk Individuals Decide to Request Predictive Testing for Huntington Disease

机译:决策中的故事:风险个体如何决定对亨廷顿病进行预测性检测

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Huntington Disease (HD) is a hereditary neurological disease that typically occurs in mid-life. There is no prevention or cure, but persons at risk may request predictive genetic testing to learn whether or not they will develop the disease later in life. Many studies describe why such persons request this knowledge. Few consider how people actually make this novel decision. Drawing on in-depth interviews with sixteen test candidates, this article differentiates three types of stories about—as well as embedded in—the experience of deciding. Each type of story sheds a different light on the meaning and experience of making this decision. Stories of having to know reveal that decision-making may be experienced as a self-evident act while stories of evolving toward it feature an incremental process of weighing up the implications. Stories of taking the decision feature a pivotal point which involves the narrator in seeing anew the opportunity to make a choice. Emphasizing previously neglected temporal, biographical and phenomenological dimensions of decision-making, this typology underscores the relevance of narrative in complex processes of decision-making. It also illustrates the inadequacy of understanding decision-making purely through the lens of rational choice.decision-making - narrative - genetic testing - Huntington Disease
机译:亨廷顿舞蹈病(HD)是一种遗传性神经病,通常发生在中年。没有预防或治愈的方法,但是有风险的人可能会要求进行预测性基因检测,以了解他们是否会在以后的生活中患此病。许多研究描述了为什么这些人需要此知识。很少有人考虑人们实际上是如何做出这个新决定的。通过对16名应试者的深入访谈,本文区分了关于决策经验的三种类型的故事,以及嵌入其中的故事。每种类型的故事都对做出此决定的意义和经验有不同的了解。必须知道的故事表明,决策可能会作为一种不言而喻的行为而经历,而朝着决策演变的故事则具有逐步权衡其含义的过程。做出决策的故事具有关键性,这使叙述者重新看到做出选择的机会。强调先前被忽略的决策的时间,传记和现象学方面的内容,这种类型强调了叙事在决策的复杂过程中的相关性。它也说明了单纯通过理性选择的角度来理解决策的不足。决策-叙事-基因检测-亨廷顿病

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  • 来源
    《Qualitative Sociology》 |2003年第2期|p.00000257-00000280|共24页
  • 作者

    Susan M. Cox;

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  • 正文语种 eng
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  • 入库时间 2022-08-18 01:34:52

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