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资助我的治疗!:呼吁开展以伦理为重点的社会科学研究,探讨众筹用于医疗护理的情况。

Fund my treatment!: A call for ethics-focused social science research into the use of crowdfunding for medical care.

作者信息

Snyder Jeremy, Mathers Annalise, Crooks Valorie A

机构信息

Faculty of Health Sciences, Simon Fraser University, 10516 Blusson Hall, 8888 University Drive, Burnaby BC V5A 1S6, Canada.

Department of Geography, Simon Fraser University, Canada.

出版信息

Soc Sci Med. 2016 Nov;169:27-30. doi: 10.1016/j.socscimed.2016.09.024. Epub 2016 Sep 16.

Abstract

Crowdfunding involves raising money from large groups of individuals, often through the use of websites dedicated to this purpose. Crowdfunding campaigns aimed at raising money to pay for expenses related to receiving medical treatment are receiving increased media attention and there is evidence that medical crowdfunding websites are heavily used. Nonetheless, virtually no scholarly attention has been paid to these medical crowdfunding campaigns and there is no systematic evidence about how widely they are used and for what reasons, and what effects they have on the provision of medical care and individuals' relationships to their health systems. Ethical concerns have been raised in relation to these campaigns, focusing on issues for campaigners and donors such as exposure to fraudulent campaigns, loss of privacy, and fairness in how medical crowdfunding funds are distributed. Medical crowdfunding websites themselves have not been systematically studied, despite their significant influence on how these campaigns are developed and promoted. In this paper, we identify three very broad and pressing ethical questions regarding medical crowdfunding for social scientists to address and offer some preliminary insights into key issues informing future answers to each: Who benefits the most from medical crowdfunding and how does medical crowdfunding affect access to medical care; How does medical crowdfunding affect our understanding of the causes of inadequate access to medical care; and How are campaigner and donor privacy affected by website design? Our observations indicate the need for increased scholarly attention to the ethical and practical effects of medical crowdfunding for campaigners, recipients, donors, and the health system as a whole.

摘要

众筹通常是指通过专门的网站从大量个人那里筹集资金。旨在筹集资金以支付与接受医疗治疗相关费用的众筹活动正受到越来越多的媒体关注,并且有证据表明医疗众筹网站被大量使用。尽管如此,实际上学术界几乎没有关注这些医疗众筹活动,也没有系统的证据表明它们的使用范围有多广、出于什么原因,以及它们对医疗服务的提供和个人与医疗系统的关系有什么影响。人们对这些活动提出了伦理方面的担忧,重点关注活动发起者和捐赠者面临的问题,如遭遇欺诈性活动、隐私泄露以及医疗众筹资金分配的公平性。尽管医疗众筹网站对这些活动的开展和推广有重大影响,但它们本身尚未得到系统研究。在本文中,我们确定了关于医疗众筹的三个非常广泛且紧迫的伦理问题,供社会科学家探讨,并对为每个问题提供未来答案的关键问题提供一些初步见解:谁从医疗众筹中受益最大,以及医疗众筹如何影响医疗服务的可及性;医疗众筹如何影响我们对医疗服务可及性不足原因的理解;网站设计如何影响活动发起者和捐赠者的隐私?我们的观察表明,学术界需要更多地关注医疗众筹对活动发起者、受助者、捐赠者以及整个医疗系统的伦理和实际影响。

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