The Ethics of Electronic Tracking Devices in Dementia Care: An Interview Study with Developers.

Wandering is a symptom of dementia that can have devastating consequences on the lives of persons living with dementia and their families and caregivers. Increasingly, caregivers are turning towards electronic tracking devices to help manage wandering. Ethical questions have been raised regarding these location-based technologies and although qualitative research has been conducted to gain better insight into various stakeholders' views on the topic, developers of these technologies have been largely excluded. No qualitative research has focused on developers' perceptions of ethics related to electronic tracking devices. To address this, we performed a qualitative semi-structured interview study based on grounded theory. We interviewed 15 developers of electronic tracking devices to better understand how they perceive ethical issues surrounding the design, development, and use of these devices within dementia care. Our results reveal that developers are strongly motivated by moral considerations and believe that including stakeholders throughout the development process is critical for success. Developers felt a strong sense of moral obligation towards topics within their control and a weaker sense of moral obligation towards topics outside their control. This leads to a perceived moral boundary between development and use, where some moral responsibility is shifted to end-users.

Electronic Tracking Devices for People With Dementia: Content Analysis of Company Websites.

BACKGROUND: Electronic tracking devices, also known as locators, monitors, or surveillance devices, are increasingly being used to manage dementia-related wandering and, subsequently, raising various ethical questions. Despite the known importance technology design has on the ethics of technologies, little research has focused on the companies responsible for the design and development of electronic tracking devices. This paper is the first to perform a qualitative analysis of the ethically related content of the websites of companies that design and develop electronic tracking devices. OBJECTIVE: The aim of this study was to understand how companies that design, develop, and market electronic tracking devices for dementia care frame, through textual marketing content, the vulnerabilities and needs of persons with dementia and caregivers, the way in which electronic tracking devices respond to these vulnerabilities and needs, and the ethical issues and values at stake. METHODS: Electronic tracking device company websites were identified via a Google search, 2 device recommendation lists (Alzheimer's Los Angeles and the Canadian Agency for Drugs and Technologies in Health), and the 2 recent reviews of wander management technology by Neubauer et al and Ray et al. To be included, websites must be official representations of companies (not market or third-party websites) developing and selling electronic tracking devices for use in dementia care. The search was conducted on December 22, 2020, returning 199 websites excluding duplicates. Data synthesis and analysis were conducted on the textual content of the included websites using a modified form of the Qualitative Analysis Guide of Leuven. RESULTS: In total, 29 websites met the inclusion criteria. Most (15/29, 52%) companies were in the United States. The target audience of the websites was largely caregivers. A range of intertwined vulnerabilities facing persons with dementia and their caregivers were identified, and the companies addressed these via care tools that centered on certain values such as providing information while preserving privacy. Life after device implementation was characterized as a world aspired to that sees increased safety for persons with dementia and peace of mind for caregivers. CONCLUSIONS: The way electronic tracking device content is currently conveyed excludes persons with dementia as a target audience. In presenting their products as a response to vulnerabilities, particular values are linked to design elements. A limitation of the results is the opaque nature of website content origins. How or when values arise in the process of design, development, and marketing is unknown. Therefore, further research should explore the process companies use to identify vulnerabilities, how values are decided upon and integrated into the design of products, and the perceptions of developers regarding the ethics of electronic tracking devices.

Electronic tracking devices in dementia care: A systematic review of argument-based ethics literature.

BACKGROUND: Wandering is a behavioral symptom of dementia that often results in patients eloping from home or care facilities, leading to high-risk situations for injury or death. To mitigate this serious problem, caregivers use electronic tracking devices (ETDs) to manage wandering. As these devices can track, record, and monitor wearers, profound ethical questions are raised related to their use in this vulnerable population. The objective of this review was to identify the ethical frames, concepts, and arguments used in the normative literature that focused on ETDs in dementia care. METHODS: We conducted a systematic literature review of normative literature that focused on ETDs in dementia care. RESULTS: Twenty-two articles met the inclusion requirements. The majority of articles utilized a principlist approach, with arguments concerning ETDs largely falling under the four principles of biomedical ethics: respect for autonomy, non-maleficence, beneficence, and justice. Privacy and informed consent were specifically emphasized. The normative literature recognizes that ETDs may have a dual effect, potentially bolstering or eroding the values connected to each principle. CONCLUSIONS: The prevailing use of principlism in the normative literature on ETDs indicates that there is a need to pursue new ethical approaches and expand upon the few non-principlist approaches already in use. In addition, many of the ethical issues around ETD use involve value-laden questions present during their design. Therefore, future ethical orientations or frameworks should account for ethical questions that exist along the design continuum on the use of ETDs.