Sekandi Juliet Nabbuye, Murray Kenya, Berryman Corinne, Davis-Olwell Paula, Hurst Caroline, Kakaire Robert, Kiwanuka Noah, Whalen Christopher C, Mwaka Erisa Sabakaki
Global Health Institute, College of Public Health, University of Georgia, Athens, GA, United States.
Department of Epidemiology and Biostatistics, College of Public Health, University of Georgia, Athens, GA, United States.
Interact J Med Res. 2022 Jun 2;11(1):e35062. doi: 10.2196/35062.
The exponential scale and pace of real-time data generated from mobile phones present opportunities for new insights and challenges across multiple sectors, including health care delivery and public health research. However, little attention has been given to the new ethical, social, and legal concerns related to using these mobile technologies and the data they generate in Africa.
The objective of this scoping review was to explore the ethical and related concerns that arise from the use of data from call detail records and mobile technology interventions for public health in the context of East Africa.
We searched the PubMed database for published studies describing ethical challenges while using mobile technologies and related data in public health research between 2000 and 2020. A predefined search strategy was used as inclusion criteria with search terms such as "East Africa," "mHealth," "mobile phone data," "public health," "ethics," or "privacy." We screened studies using prespecified eligibility criteria through a two-stage process by two independent reviewers. Studies were included if they were (1) related to mobile technology use and health, (2) published in English from 2000 to 2020, (3) available in full text, and (4) conducted in the East African region. We excluded articles that (1) were conference proceedings, (2) studies presenting an abstract only, (3) systematic and literature reviews, (4) research protocols, and (5) reports of mobile technology in animal subjects. We followed the five stages of a published framework for scoping reviews recommended by Arksey and O'Malley. Data extracted included title, publication year, target population, geographic region, setting, and relevance to mobile health (mHealth) and ethics. Additionally, we used the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews checklist to guide the presentation of this scoping review. The rationale for focusing on the five countries in East Africa was their geographic proximity, which lends itself to similarities in technology infrastructure development.
Of the 94 studies identified from PubMed, 33 met the review inclusion criteria for the final scoping review. The 33 articles retained in the final scoping review represent studies conducted in three out of five East African countries: 14 (42%) from Uganda, 13 (39%) from Kenya, and 5 (16%) from Tanzania. Three main categories of concerns related to the use of mHealth technologies and mobile phone data can be conceptualized as (1) ethical issues (adequate informed consent, privacy and confidentiality, data security and protection), (2) sociocultural issues, and (3) regulatory/legal issues.
This scoping review identified major cross-cutting ethical, regulatory, and sociocultural concerns related to using data from mobile technologies in the East African region. A comprehensive framework that accounts for the critical concerns raised would be valuable for guiding the safe use of mobile technology data for public health research purposes.
手机产生的实时数据呈指数级增长,其规模和速度为包括医疗服务和公共卫生研究在内的多个领域带来了新的见解和挑战。然而,对于在非洲使用这些移动技术及其产生的数据所涉及的新的伦理、社会和法律问题,人们关注甚少。
本范围综述的目的是探讨在东非背景下,使用通话详单记录数据和移动技术干预措施进行公共卫生时出现的伦理及相关问题。
我们在PubMed数据库中搜索了2000年至2020年间发表的描述在公共卫生研究中使用移动技术及相关数据时所面临伦理挑战的研究。使用预定义的搜索策略作为纳入标准,搜索词包括“东非”“移动健康”“手机数据”“公共卫生”“伦理”或“隐私”。我们由两名独立评审员通过两阶段流程,根据预先设定的纳入标准筛选研究。符合以下条件的研究被纳入:(1)与移动技术使用和健康相关;(2)2000年至2020年以英文发表;(3)有全文;(4)在东非地区进行。我们排除了以下文章:(1)会议论文集;(2)仅呈现摘要的研究;(3)系统评价和文献综述;(4)研究方案;(5)关于动物受试者的移动技术报告。我们遵循了Arksey和O'Malley推荐的范围综述已发表框架的五个阶段。提取的数据包括标题、出版年份、目标人群、地理区域、背景以及与移动健康(mHealth)和伦理的相关性。此外,我们使用了范围综述的PRISMA(系统评价和Meta分析的首选报告项目)扩展清单来指导本范围综述的呈现。关注东非这五个国家的理由是它们地理位置相近,这有利于技术基础设施发展的相似性。
从PubMed中识别出的94项研究中,有33项符合最终范围综述的纳入标准。最终范围综述中保留的33篇文章代表了在东非五个国家中的三个国家进行的研究:14项(42%)来自乌干达,13项(39%)来自肯尼亚,5项(16%)来自坦桑尼亚。与使用移动健康技术和手机数据相关的主要三类问题可概念化为:(1)伦理问题(充分知情同意、隐私和保密、数据安全和保护);(2)社会文化问题;(3)监管/法律问题。
本范围综述确定了与在东非地区使用移动技术数据相关的主要交叉伦理、监管和社会文化问题。一个考虑到所提出关键问题的综合框架对于指导将移动技术数据安全用于公共卫生研究目的将是有价值的。