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Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel.圆满回归:囊性纤维化患者科学家小组的反思与启示。
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Diagnostic Uncertainty, Microbes, and the Isolation of People with Cystic Fibrosis.
J Hist Med Allied Sci. 2022 Apr 29;77(2):186-216. doi: 10.1093/jhmas/jrab056.
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6
Air care: an 'aerography' of breath, buildings and bugs in the cystic fibrosis clinic.空气关怀:囊性纤维化诊所中呼吸、建筑和细菌的空气成像。
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Genomics and infectious disease: a call to identify the ethical, legal and social implications for public health and clinical practice.基因组学与传染病:呼吁明确对公共卫生和临床实践的伦理、法律和社会影响。
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可传播微生物的影响:囊性纤维化群体如何动员起来对抗洋葱伯克霍尔德菌。

The Impact of Transmissible Microbes: How the Cystic Fibrosis Community Mobilized Against Cepacia.

作者信息

Mueller Rebecca

出版信息

Perspect Biol Med. 2023;66(1):89-106. doi: 10.1353/pbm.2023.0005.

DOI:10.1353/pbm.2023.0005
PMID:38662010
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11104521/
Abstract

Long before COVID-19 made social distancing familiar, people with cystic fibrosis (CF) already practiced such behaviors. CF is held up as a classic example of genetic disease, yet people with CF are also susceptible to bacteria from the environment and from other CF patients. Starting in the 1980s, a bacterial epidemic in the CF population highlighted clashing priorities of connection, physical safety, and environmental protection. Policymakers ultimately called for the physical separation of people with CF from one another via recommendations that reconfigured the CF community. Simultaneously, medical researchers recognized that one highly transmissible CF pathogen called cepacia was being developed for environmental applications and got the EPA to limit cepacia's environmental deployment. Environmental regulations speak to the challenge of useful microbes that harm a minority, but CF cross-infection also involves legal implications for microbial and genetic discrimination, social consequences for CF communities, and ethical questions about balancing autonomy, harms, and benefits. As scientists increasingly study connections between host genetics, microbial genetics, and infectious risks, CF is a vital referent.

摘要

早在新冠疫情让社交距离成为人们熟知的行为之前,囊性纤维化(CF)患者就已经践行这类行为了。CF被视为遗传病的经典例子,但CF患者也易受来自环境和其他CF患者的细菌感染。从20世纪80年代开始,CF患者群体中的一场细菌疫情凸显了在社交联系、身体安全和环境保护方面相互冲突的优先事项。政策制定者最终通过重新构建CF患者群体的建议,呼吁CF患者彼此进行身体隔离。与此同时,医学研究人员认识到,一种名为洋葱伯克霍尔德菌的高传染性CF病原体正被开发用于环境应用,并促使美国环境保护局(EPA)限制洋葱伯克霍尔德菌在环境中的应用。环境法规涉及到有益微生物对少数群体造成伤害的挑战,但CF交叉感染还涉及微生物和基因歧视的法律问题、CF患者群体的社会后果,以及关于平衡自主权、危害和益处的伦理问题。随着科学家越来越多地研究宿主遗传学、微生物遗传学和感染风险之间的联系,CF是一个至关重要的参考对象。