基因困扰:调解孕前和电视上的健康困扰

Ann-Katrine Schmidt Nielsen, C. Stage
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引用次数: 0

摘要

通过“健康鬼魂”方法的发展,本文研究了DR纪录片系列Gentesten ændrede mit liv(2020)[基因测试改变了我的生活]中患者前疾病叙述是如何被调解和协商的。我们认为,这种纪录片的形式证明了基因检测技术的发展如何改变了疾病的经历、类型和叙述,这些经历、类型和叙述越来越多地转向了诊断前和症状前领域。分析显示了基因检测技术的使用是如何创造出鬼魂病的情况的,在这种情况下,通过绘制过去和可能的未来诊断的家庭病理图,病人会遇到遗传纽带固有的复杂的时间性和纠缠。此外,我们声称,这些与死亡、脆弱性和潜在损失的缠缠绵绵的遭遇可以以各种响应方式采取行动或倾听。因此,调解病人患病前的叙述需要在对参与者的照顾和对可诉说的、变革性叙述的渴望之间取得伦理平衡。
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Genetic hauntings: Mediating pre-patienthood and haunted health on TV
Through the development of a “health hauntological” approach, this article investigates how pre-patient illness narratives are mediated and negotiated in and around the DR documentary series Gentesten ændrede mit liv (2020) [The gene test changed my life]. We argue that this documentary format attests to how the expansion of genetic testing technologies alters experiences, genres, and narratives of illness that increasingly move to a pre-diagnostic and pre-symptomatic domain. The analysis shows how the use of genetic testing technologies creates hauntological situations in which pre-patients – through the mapping of family pathologies of the past and possible future diagnoses – encounter the complex temporalities and entanglements inherent to genetic bonds. Furthermore, we claim that these haunting encounters with mortality, vulnerability, and potential loss can be acted on – or listened to – in various responsive ways. Mediating pre-patient illness narratives thus entails an ethical balancing between care for participants and the desire for tellable, transformational narratives.
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CiteScore
1.40
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0.00%
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审稿时长
25 weeks
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