基于全球移动电话的非传染性疾病调查中的伦理考量:概念性探索

Ethics Considerations in Global Mobile Phone-Based Surveys of Noncommunicable Diseases: A Conceptual Exploration.

作者信息

Ali Joseph, Labrique Alain B, Gionfriddo Kara, Pariyo George, Gibson Dustin G, Pratt Bridget, Deutsch-Feldman Molly, Hyder Adnan A

机构信息

Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, United States.

Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.

出版信息

J Med Internet Res. 2017 May 5;19(5):e110. doi: 10.2196/jmir.7326.

Abstract

Mobile phone coverage has grown, particularly within low- and middle-income countries (LMICs), presenting an opportunity to augment routine health surveillance programs. Several LMICs and global health partners are seeking opportunities to launch basic mobile phone-based surveys of noncommunicable diseases (NCDs). The increasing use of such technology in LMICs brings forth a cluster of ethical challenges; however, much of the existing literature regarding the ethics of mobile or digital health focuses on the use of technologies in high-income countries and does not consider directly the specific ethical issues associated with the conduct of mobile phone surveys (MPS) for NCD risk factor surveillance in LMICs. In this paper, we explore conceptually several of the central ethics issues in this domain, which mainly track the three phases of the MPS process: predata collection, during data collection, and postdata collection. These include identifying the nature of the activity; stakeholder engagement; appropriate design; anticipating and managing potential harms and benefits; consent; reaching intended respondents; data ownership, access and use; and ensuring LMIC sustainability. We call for future work to develop an ethics framework and guidance for the use of mobile phones for disease surveillance globally.

摘要

移动电话覆盖范围不断扩大,尤其是在低收入和中等收入国家(LMICs),这为加强常规健康监测计划提供了契机。一些低收入和中等收入国家以及全球卫生伙伴正在寻找机会开展基于移动电话的非传染性疾病(NCDs)基础调查。在低收入和中等收入国家,此类技术的使用日益增加带来了一系列伦理挑战;然而,现有的许多关于移动或数字健康伦理的文献都聚焦于高收入国家的技术使用情况,并未直接考虑与在低收入和中等收入国家开展用于非传染性疾病风险因素监测的移动电话调查(MPS)相关的具体伦理问题。在本文中,我们从概念上探讨了该领域的几个核心伦理问题,这些问题主要围绕移动电话调查过程的三个阶段:数据收集前、数据收集期间和数据收集后。这些问题包括确定活动的性质;利益相关者的参与;适当的设计;预测和管理潜在的危害和益处;同意;联系目标受访者;数据所有权、获取和使用;以及确保低收入和中等收入国家的可持续性。我们呼吁未来开展相关工作,以制定全球范围内使用移动电话进行疾病监测的伦理框架和指南。

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