Patients-in-Waiting: Living between Sickness and Health in the Genomics Era
Patients-in-Waiting: Living between Sickness and Health in the Genomics Era
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DOI：
10.1177/0022146510386794
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发表时间：
2010-12-01
影响因子：
5
通讯作者：
Buchbinder, Mara
中科院分区：
文献类型：
--
作者：
Timmermans, Stefan;Buchbinder, Mara
最近在美国扩大新生儿筛查的社会后果是什么？新筛查技术的采用产生了对筛查目标性质的诊断不确定性，不仅不清楚新生儿是否会患上疾病，而且不清楚实际情况是什么。基于对遗传学诊所的观察和对父母和遗传学家的深入访谈，我们研究了父母和临床工作人员如何得出不确定的新生儿筛查结果的社会意义。我们发现一些新生儿会经历在正常健康状态和病理状态之间延长阈限的特定轨迹。在回顾相关文献的基础上，我们建议将“候诊病人”作为健康与疾病之间接受医学监测的人的总称概念。
What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of screening targets, making it unclear not only whether a newborn will develop a disease but also what the condition actually is. Based on observations in a genetics clinic and in-depth interviews with parents and geneticists, we examine how parents and clinical staff work out the social significance of uncertain newborn screening results. We find that some newborns will experience a specific trajectory of prolonged liminality between a state of normal health and pathology. Based on a review of related literatures, we suggest "patients-in-waiting" as an umbrella concept for those under medical surveillance between health and disease.