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

与自然环境中听力损失儿童的客观行为测量相关的生物伦理问题

• 批准号: 10790269
• 负责人: DANIEL S MESSINGER
• 金额: $ 29.7万
• 依托单位: UNIVERSITY OF MIAMI CORAL GABLES
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-01 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10790269
• 关键词: Address; Administrative Supplement; Adult; Advocate; Affect; Algorithmic Software; Attention; Behavior; Behavioral; Behavioral Research; Bioethical Issues; Bioethics; Child; Child Behavior; Child Development; Child Rearing; Clinical Research; Cochlear Implants; Code; Collection; Communication; Communities; Computing Methodologies; Data; Data Collection; Data Storage and Retrieval; Devices; Dimensions; Disease; Educational workshop; Emerging Technologies; Environment; Ethical Issues; Ethics; Genetic Transcription; Guidelines; Health; Hearing Aids; Home; Hour; Incidental Findings; Individual; Interview; Investigation; Language; Language Development; Location; Machine Learning; Measures; Methods; Nursery Schools; Parents; Participant; Pathologist; Perception; Policies; Positioning Attribute; Privacy; Reporting; Research; Research Personnel; Resources; Schools; Social isolation; Speech; Speech Sound; Structure; Time; behavior measurement; data dissemination; deaf; design; digital; disability; hard of hearing; hearing impairment; human subject protection; improved; innovation; insight; member; multimodality; new technology; parent grant; peer; policy recommendation; research study; sensor; social contact; stressor; teacher; teaching assistant; technological innovation; vocalization

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

摘要/概要 这是一份R 01行政补充文件，旨在对收集、使用、 听力损失儿童和成人客观行为测量的存储 与他们沟通的人。在真实的世界中越来越多地使用多模态客观度量 正在以前所未有的规模产生数字数据。父R 01客观措施 包括个别录音和对儿童及其教师实际位置跟踪 在学前班包容性教室中，儿童和成人佩戴的多模式传感器，以及 人工耳蜗和助听器佩戴时间的数据记录-在家里，在学校， 社区R 01计算方法包括机器学习以检测社交网络的实例。 接触和儿童和教师/干预者在课堂上发声。父代R 01结果 从正在进行的研究在包容性课堂表明，儿童的发声时， 与同伴和教师的社会交往与语言发展呈正相关 有听力损失和没有听力损失的儿童的听力损失。虽然客观方法有很大的潜力， 改善儿童的长期沟通，他们提出了与参与有关的道德问题 （纵向）研究，偶然发现，以及结果的回报。研究人员 开始讨论数小时音频和位置跟踪的道德问题--以及相关的压力源 数据记录。然而，人们对大行为数据的伦理维度知之甚少 在现实世界中的收集。补充父R 01的计算方法， 理解与这些问题引起的伦理问题的定性调查的相互作用 方法创新。这份补编侧重于生物伦理学研究， 通过实施2项具体的生物伦理政策，增加母公司R 01影响生物伦理政策的可能性 目标。1)确定R 01参与者和其他利益相关者的看法和关注点 关于采用儿童和成人行为的多模态客观测量的研究， 自然主义的设置。这将通过指挥、转录、编码和主题化来完成 与当前和之前的R 01参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，并使用客观的行为措施的研究结果的回报。主题 从半结构化访谈的定性分析中得出的结论将为我们提供一个 包括家长、教育工作者、研究人员和倡导者在内的利益相关者研讨会， 为在真实的世界环境中使用客观方法的研究制定拟议的道德准则。 2