Bioethical Issues Associated with Objective Behavioral Measurement of Children with Hearing Loss in Naturalistic Environments

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Abstract/Summary This is a R01 Administrative Supplement to conduct bioethics research on the collection, use, and storage of objective behavioral measurements of children with hearing loss and the adults with whom they communicate. Increasing use of multimodal objective measures in real world settings is producing digital data on unprecedented scales. Parent R01 objective measures include individual audio recordings and physical location tracking of children and their teachers in preschool inclusion classrooms from child- and adult-worn multimodal sensors, as well as datalogging of cochlear implant and hearing aid wear-time at home, at school, and in the community. R01 computational methods include machine learning to detect instances of social contact and child and teacher/interventionist vocalizations in the classroom. Parent R01 results from ongoing research in inclusive classroom indicate that children's vocalizations when in social contact with peers and teachers are positively associated with the language development of both children with and without hearing loss. While objective methods have great potential to improve children's long-term communication, they raise ethical issues related to engagement with (longitudinal) research, incidental findings, and the return of results. Researchers have begun to discuss the ethics of multi-hour audio and location tracking—and stressors associated with datalogging. However, little is known about the ethical dimensions of big behavioral data collection in real-world settings. Supplementing the Parent R01's computational approach to understanding interaction with a qualitative investigation of ethical issues raised by these methods is innovative. The Supplement—which focuses on bioethics research--will dramatically increase the likelihood of the Parent R01 influencing bioethics policy by pursuing 2 Specific Aims. 1) Ascertain the perceptions and concerns of R01 participants and other stakeholders with respect to research employing multimodal objective measures of child and adult behavior in naturalistic settings. This will be accomplished by conducting, transcribing, coding, and theming semi-structured interviews with current and prior R01 participants and other stakeholders on engagement in longitudinal research and the return of study research results to participants. Aim 2. Develop policy recommendations addressing ethical issues related to participation, engagement, and return of results in research using objective measures of behavior. Themes emerging from the qualitative analysis of the semi-structured interviews will inform a Stakeholder Workshop including parents, educators, researchers, and advocates that will develop proposed ethical guidelines for research using objective methods in real world settings. 2