迷你肠道在培养皿中：成人囊性纤维化 (CF) 患者和年轻 CF 患者父母对类器官技术的看法。
Mini-guts in a dish: Perspectives of adult Cystic Fibrosis (CF) patients and parents of young CF patients on organoid technology.
机构信息
Julius Center for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Center Utrecht, Internal post Str. 6.131, P.O. Box 85500, 3508 GA Utrecht, The Netherlands.
Department of Pediatric Pulmonology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Internal post KH.01.419.0, P.O. Box 85090, 3508 AB Utrecht, The Netherlands.
出版信息
J Cyst Fibros. 2018 May;17(3):407-415. doi: 10.1016/j.jcf.2018.02.004. Epub 2018 Mar 6.
BACKGROUND
Organoid technology enables the cultivation of human tissues in a dish. Its precision medicine potential could revolutionize the Cystic Fibrosis (CF) field. We provide a first thematic exploration of the patient perspective on organoid technology to set the further research agenda, which is necessary for responsible development of this ethically challenging technology.
METHODS
23 semi-structured qualitative interviews with 14 Dutch adult CF patients and 12 parents of young CF patients to examine their experiences, opinions, and attitudes regarding organoid technology.
RESULTS
Four themes emerged: (1) Respondents express a close as well as a distant relationship to organoids; (2) the open-endedness of organoid technology sparks hopes and concerns, (3) commercial use evokes cautiousness. (4) Respondents mention the importance of sound consent procedures, long-term patient engagement, responsible stewardship, and stringent conditions for commercial use.
CONCLUSIONS
The precision medicine potential of organoid technology can only be realized if the patient perspective is taken adequately into account.
背景
类器官技术能够在培养皿中培养人体组织。它在精准医疗方面的潜力可能会彻底改变囊性纤维化（CF）领域。我们首次从患者角度出发，对类器官技术进行了主题探索，为这项具有伦理挑战性的技术的负责任发展设定了进一步的研究议程。
方法
对 14 名荷兰成年 CF 患者和 12 名年轻 CF 患者的父母进行了 23 次半结构化定性访谈，以探讨他们对类器官技术的经验、意见和态度。
结果
出现了四个主题：（1）受访者表示与类器官既有密切关系，也有疏远关系；（2）类器官技术的开放性引发了希望和担忧；（3）商业用途引起了谨慎；（4）受访者提到了健全的同意程序、长期的患者参与、负责任的管理以及商业用途的严格条件的重要性。
结论
如果充分考虑患者的观点，类器官技术的精准医疗潜力才能得以实现。
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