University of California-Los Angeles, Deparment of Sociology, 90095-1551, USA.
J Health Soc Behav. 2010 Dec;51(4):408-23. doi: 10.1177/0022146510386794.
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.
最近美国新生儿筛查范围的扩大带来了哪些社会后果？新筛查技术的采用导致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，甚至不清楚其具体情况是什么。基于遗传诊所的观察和对父母及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确定不确定的新生儿筛查结果的社会意义。我们发现，一些新生儿将在正常健康和病理状态之间经历一种特定的、长时间的中间状态。通过对相关文献的回顾，我们提出“等待中的患者”作为介于健康和疾病之间的医学监测人群的一个总称。
