Kubheka Brenda Zanele
School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa.
Health IQ Consulting, Johannesburg, South Africa.
BMC Med Ethics. 2020 Oct 6;21(1):96. doi: 10.1186/s12910-020-00521-2.
Social media has globalised compassion enabling requests for donations to spread beyond geographical boundaries. The use of social media for medical crowdfunding links people with unmet healthcare needs to charitable donors. There is no doubt that fundraising campaigns using such platforms facilitates access to financial resources to the benefit of patients and their caregivers.
This paper reports on a critical review of the published literature and information from other online resources discussing medical crowdfunding and the related ethical questions. The review highlighted the benefits of crowdfunding as well as the under-exploration of the risk of having patients' desires and human rights undermined during online fundraising campaigns. Majority of these campaigns get initiated on behalf of the patients, especially the very sick and dependant. The ethical questions raised relate to the voluntariness of informed consent and the possibility of patients being used as a means to an end. Vulnerability of patients may expose them to coercion, undue influence, manipulation, and violation of their human rights. The success of these campaigns is influenced by the digital skills, pre-existing social networks and, the emotional potency. Healthcare is a public good, and online market forces should not determine access to essential health services. The benefits of crowdfunding cannot be subverted, but it can perpetuate unintended injustices, especially those arising from socio-economic factors.
Policymakers ought to monitor the utilisation of crowdfunding sites to identify policy failures and unmet essential health care needs responsible for driving individuals to use these platforms. The upholding of human rights and the fundamental respect of the individual's wishes is a moral imperative. The need for an ethics framework to guide different stakeholders during medical crowdfunding needs further examination.
社交媒体使同情心全球化,使得捐款请求能够跨越地理界限传播。利用社交媒体进行医疗众筹,将有未满足医疗需求的人与慈善捐赠者联系起来。毫无疑问,使用此类平台开展的筹款活动有助于获取资金,造福患者及其护理人员。
本文报告了对已发表文献以及其他在线资源中有关医疗众筹及相关伦理问题的信息进行的批判性综述。该综述强调了众筹的好处,同时也指出在在线筹款活动中患者意愿和人权受到损害的风险尚未得到充分探讨。这些活动大多是代表患者发起的,尤其是重病患者和需要照料的患者。引发的伦理问题涉及知情同意的自愿性以及患者被用作达到目的手段的可能性。患者的脆弱性可能使他们面临胁迫、不当影响、操纵以及人权侵犯。这些活动的成功受到数字技能、既有社交网络和情感影响力的影响。医疗保健是公益事业,在线市场力量不应决定基本医疗服务的获取。众筹的好处不可被颠覆,但它可能延续意外的不公正现象,尤其是那些由社会经济因素导致的不公正。
政策制定者应监测众筹网站的使用情况,以识别政策失灵以及导致个人使用这些平台的未满足的基本医疗需求。维护人权和对个人意愿的基本尊重是一项道德义务。在医疗众筹期间需要一个伦理框架来指导不同利益相关者,这一需求有待进一步研究。