Ethical considerations implementing wearable sensors to record communication interactions by people with aphasia in the home and community

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Stroke is a major public health issue with life-long consequences for millions of survivors and their caregivers. Aphasia is a common consequence of stroke whose impact reaches beyond the resulting language deficit into every aspect of a person’s life. The goal of rehabilitation for persons with aphasia is to improve communication, and ultimately meaningful participation, in home and community activities. The parent R01 measures treatment outcomes in terms of generalization and includes exploratory measures that involve the use of multiple wearable monitoring devices: laryngeal sensor, long-form audio recorder and GPS. The combined capabilities of these wearable monitoring devices present an innovative opportunity to measure communication behaviors in participants’ day-to-day activities at home and around their community. However, these technologies present a variety of bioethical challenges to researchers and participants. For persons with aphasia in particular, there are added challenges related to the informed consent process due to language impairments that may impact comprehension or autonomy in decision making. This administrative supplement investigates the informed consent process and highlights areas of ethical importance for research that uses wearable monitoring devices with people with aphasia. We take a collaborative approach to gather insight from research participants, their families as well as experts in bioethics and fellow researchers. We plan to generate a set of recommendations addressing the bioethical challenges associated with this type of research to assist others in the field and inform future policy directions. Specifically, the administrative supplement aims to (1) conduct an analysis of the informed consent process to identify opportunities for improvement and challenges related to the informed consent process when wearable monitoring devices will be used by people with aphasia; (2) conduct semi-structured interviews with study participants and identified family members, caregivers, and/or friends to describe their experience and attitudes regarding the use and implications of wearable monitoring devices; and (3) generate a set of recommendations to facilitate the ethical conduct of research that uses wearable monitoring devices.