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

摘要/摘要 这是一份R01行政副刊，旨在对收集、使用、 和存储听力损失儿童和成人的客观行为测量 他们与之交流的人。在现实世界中越来越多地使用多模式客观衡量标准 Setting正在以前所未有的规模产生数字数据。家长R01客观衡量标准 包括儿童及其教师个人录音和物理位置跟踪 在学龄前包容教室中，儿童和成人佩戴的多模式传感器以及 家庭、学校和家庭人工耳蜗和助听器佩戴时间的数据记录 社区。R01计算方法包括检测社交网络实例的机器学习 在课堂上与儿童和教师/干预主义者发声。父R01结果 来自包容性课堂的正在进行的研究表明，儿童在 与同伴和教师的社会接触与语言发展呈正相关 有听力损失的儿童和没有听力损失的儿童。虽然客观方法有很大的潜力 改善儿童的长期沟通，他们提出了与参与相关的伦理问题 通过(纵向)研究、偶然发现和结果返回。研究人员已经 开始讨论多小时音频和位置跟踪的道德-以及相关的压力源 使用数据记录。然而，人们对大数据行为的伦理层面知之甚少 真实世界设置中的集合。对原R01‘S计算方法的补充 理解与定性调查的相互作用，这些问题由 方法是创新的。这份专注于生物伦理学研究的副刊将极大地 通过追求2个特定目标来增加母公司R01影响生物伦理政策的可能性 目标。1)确定R01参与者和其他利益相关者的看法和关切 关于使用儿童和成人行为的多模式客观测量的研究 自然主义的背景。这将通过指挥、转录、编码和主题化来实现 对当前和以前的R01参与者和其他利益相关者进行半结构化访谈 参与纵向研究，并将研究结果返还给参与者。 目标2.制定政策建议，解决与参与有关的道德问题， 参与，并使用客观的行为衡量标准返回研究结果。主题 从半结构化面试的定性分析中脱颖而出将为 利益相关者研讨会，包括家长、教育工作者、研究人员和倡导者 为在现实世界中使用客观方法进行研究制定拟议的伦理指导方针。 2.

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