Wexler Anna
Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, 423 Guardian Drive, Philadelphia, PA 19104, US.
Citiz Sci. 2022;7(1). doi: 10.5334/cstp.553. Epub 2022 Dec 15.
The practice of medicine is typically conceptualized as remaining within the boundaries of a hospital or clinic. However, in recent years, patients have been able to gain access to information about medical research as it is ongoing. As a result, there has been a rise in do-it-yourself (DIY) medicine, where individuals treat themselves for medical conditions outside of clinical settings, often mimicking experimental therapies that remain inaccessible to the wider public. For example, in DIY brain stimulation, individuals suffering from depression build at-home electrical headsets using nine-volt batteries, mimicking an experimental neuroscience technique used in scientific laboratories. In DIY fecal transplantation, those with intestinal disorders like and inflammatory bowel disease transplant stool from donors into themselves with the aid of blenders and enemas. In the open Artificial Pancreas System movement, diabetes patients hacked together an artificial pancreas system from their glucose monitors and insulin pumps, years before such a system was approved by the United States Food and Drug Administration (US FDA). To date, scholarship on DIY medicine has largely been relegated to specific medical domains (e.g., neurology, gastroenterology, infectious disease). In this paper, however, I recognize DIY medicine as a cross-cutting phenomenon that has emerged independently across medical domains but shares common features. I map the varieties of DIY medicine across these domains and suggest that four key factors lead to their creation, growth, and uptake. In doing so, this essay sheds light on an understudied area of biomedical citizen science that is likely to grow substantially in the coming decades.
医学实践通常被概念化为局限于医院或诊所的范围内。然而,近年来,患者能够获取正在进行的医学研究信息。结果,出现了“自己动手做”(DIY)医学的现象,即个人在临床环境之外自行治疗疾病,常常模仿广大公众无法获得的实验性疗法。例如,在DIY脑刺激中,患有抑郁症的个人使用九伏电池在家自制头戴式电装置,模仿科学实验室中使用的一种实验性神经科学技术。在DIY粪便移植中,患有肠道疾病如 和炎症性肠病的人借助搅拌机和灌肠器将捐赠者的粪便移植到自己体内。在开放式人工胰腺系统运动中,糖尿病患者在这种系统获得美国食品药品监督管理局(US FDA)批准的数年前,就用他们的血糖监测仪和胰岛素泵拼凑出了一个人工胰腺系统。迄今为止,关于DIY医学的学术研究主要局限于特定医学领域(如神经学、胃肠病学、传染病学)。然而,在本文中,我将DIY医学视为一种跨领域现象,它在各个医学领域独立出现,但具有共同特征。我梳理了这些领域中DIY医学的各种形式,并指出四个关键因素导致了它们的产生、发展和应用。通过这样做,本文揭示了生物医学公民科学中一个尚未得到充分研究的领域,该领域在未来几十年可能会大幅增长。