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在隐私的阴影下:被忽视的 COVID-19 数字流行病学中的伦理问题。

In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology.

机构信息

Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich, Switzerland.

Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich, Switzerland.

出版信息

Epidemics. 2022 Dec;41:100652. doi: 10.1016/j.epidem.2022.100652. Epub 2022 Nov 4.

Abstract

The COVID-19 pandemic witnessed a surge in the use of health data to combat the public health threat. As a result, the use of digital technologies for epidemic surveillance showed great potential to collect vast volumes of data, and thereby respond more effectively to the healthcare challenges. However, the deployment of these technologies raised legitimate concerns over risks to individual privacy. While the ethical and governance debate focused primarily on these concerns, other relevant issues remained in the shadows. Leveraging examples from the COVID-19 pandemic, this perspective article aims to investigate these overlooked issues and their ethical implications. Accordingly, we explore the problem of the digital divide, the role played by tech companies in the public health domain and their power dynamics with the government and public research sector, and the re-use of personal data, especially in the absence of adequate public involvement. Even if individual privacy is ensured, failure to properly engage with these other issues will result in digital epidemiology tools that undermine equity, fairness, public trust, just distribution of benefits, autonomy, and minimization of group harm. On the contrary, a better understanding of these issues, a broader ethical and data governance approach, and meaningful public engagement will encourage adoption of these technologies and the use of personal data for public health research, thus increasing their power to tackle epidemics.

摘要

新冠疫情期间,人们大量使用健康数据来应对公共卫生威胁。因此,数字技术在疫情监测中的应用显示出巨大的潜力,可以收集大量数据,从而更有效地应对医疗保健挑战。然而,这些技术的应用引发了人们对个人隐私风险的合理担忧。虽然伦理和治理方面的争论主要集中在这些问题上,但其他相关问题仍未得到关注。本文通过新冠疫情的实例,探讨了这些被忽视的问题及其伦理含义。具体而言,我们探讨了数字鸿沟问题、科技公司在公共卫生领域的作用及其与政府和公共研究部门之间的权力动态,以及个人数据的再利用问题,特别是在缺乏公众充分参与的情况下。即使个人隐私得到了保障,如果不能妥善解决这些问题,数字流行病学工具将损害公平、公正、公众信任、利益的公平分配、自主权和群体伤害最小化。相反,更好地理解这些问题,采取更广泛的伦理和数据治理方法,并进行有意义的公众参与,将鼓励这些技术的应用和个人数据在公共卫生研究中的使用,从而增强其应对疫情的能力。

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