Department of Anthropology, University of Copenhagen, Denmark.
Dalla Lana School of Public Health, University of Toronto, Ontario, Canada.
Soc Sci Med. 2019 Jul;232:50-57. doi: 10.1016/j.socscimed.2019.04.035. Epub 2019 Apr 25.
Devices equipped with sensors to track mobility, such as through Global Position Systems (GPS) and accelerometery, are increasingly being used for research. Following Canadian, US, and International guidelines there is a need to give special consideration when conducting research with vulnerable populations. This paper examines specific ethical concerns for conducting research with mobile sensing devices for use by vulnerable populations, considering aspects of both research design and research process. Drawing on insights from feminist design and aligned fields, such as participatory design and action research, we contend that any research design and process for working with vulnerable populations must be developed in collaboration with the particular groups and communities who are part of the research. As part of this process of collaborative research, we discuss risks in terms of the lack of control over data associated with choosing commercial devices, as well as practicality and obtrusiveness of devices for the wearer. We also discuss the significance of informed consent and refusal and issues relating to security and safety during research. As part of the collaborative research design and process, we argue that participants should be given as much control over their data as possible. Based on this discussion, we provide recommendations for researchers to consider, which are broadly relevant for research using mobile sensing devices but particularly significant in relation to vulnerable populations.
越来越多的研究开始使用配备传感器的设备来跟踪移动轨迹，例如全球定位系统（GPS）和加速度计。根据加拿大、美国和国际准则，在针对弱势群体开展研究时，需要特别考虑一些问题。本文针对使用移动感应设备开展弱势群体研究时的具体伦理问题进行了探讨，从研究设计和研究过程两个方面进行了分析。借鉴女权主义设计以及参与式设计和行动研究等相关领域的见解，我们认为，任何针对弱势群体的研究设计和流程都必须与作为研究一部分的特定群体和社区共同开发。在这个协作研究过程中，我们根据选择商业设备时缺乏对数据的控制、设备对佩戴者的实用性和干扰性等方面讨论了风险。我们还讨论了在研究过程中告知同意和拒绝的重要性以及与安全相关的问题。作为协作研究设计和流程的一部分，我们主张应尽可能让参与者对其数据拥有更多控制权。基于这一讨论，我们为研究人员提供了一些建议，这些建议广泛适用于使用移动感应设备的研究，但对于弱势群体而言尤为重要。
