a Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University , Baltimore , MD , USA.
b Berman Institute of Bioethics, Johns Hopkins University , Baltimore , MD , USA.
Glob Public Health. 2019 Aug;14(8):1167-1181. doi: 10.1080/17441692.2019.1566482. Epub 2019 Jan 10.
Active public health surveillance has traditionally been carried out through face-to-face household surveys or contact with providers, which can be time and resource intensive. The increasing ubiquity of mobile phones and availability of phone survey platforms provide an opportunity to explore the use of mobile phone surveys (MPS) for active disease and risk factor surveillance, including for non-communicable diseases (NCDs). Scholars are increasingly examining the ethics implications of mobile health (mHealth), but few have focused on the ethics of mHealth in low- and middle-income countries (LMICs), and even fewer on mHealth for active surveillance. Given that little is known about ethics-related attitudes and practices of stakeholders invested in the conduct and oversight of mHealth in LMICs, we undertook a cross-sectional global stakeholder survey of ethics-related issues implicated by active observational MPS, with a contextual frame of monitoring NCD risk factors in LMICs. We analyse these findings with an organising focus on ethical issues that arise before, during and after conduct of an MPS including defining the activity; anticipating harms and benefits; obtaining consent; data ownership, access, and use; and ensuring sustainability. Finally, we present a set of empirical, conceptual, and normative considerations that arise from this analysis and merit further consideration.
传统的主动公共卫生监测是通过面对面的家庭调查或与提供者联系来进行的，这可能需要大量的时间和资源。由于手机的普及以及电话调查平台的可用性，为探索使用移动电话调查（MPS）进行主动疾病和风险因素监测提供了机会，包括用于非传染性疾病（NCD）。学者们越来越关注移动健康（mHealth）的伦理含义，但很少有人关注中低收入国家（LMIC）的 mHealth 伦理问题，更没有人关注 mHealth 用于主动监测。鉴于人们对参与 LMIC 中 mHealth 的制定和监督的利益相关者在与伦理相关的态度和实践方面知之甚少，我们对主动观察性 MPS 所涉及的与伦理相关的问题进行了全球利益相关者的横断面调查，以监测 LMIC 中 NCD 风险因素的背景框架。我们分析了这些发现，重点关注在 MPS 进行之前、期间和之后出现的伦理问题，包括定义活动；预测危害和利益；获得同意；数据所有权、访问和使用；以及确保可持续性。最后，我们提出了一套来自该分析的经验、概念和规范考虑因素，值得进一步考虑。
