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/总结 这是 R01 行政补充，旨在对收集、使用、 存储听力损失儿童和成人的客观行为测量结果 他们与谁沟通。在现实世界中越来越多地使用多模式客观测量 设置正在以前所未有的规模产生数字数据。父 R01 客观措施 包括儿童及其老师的个人录音和物理位置跟踪 在学前班包容性教室中，通过儿童和成人佩戴的多模态传感器以及 记录在家中、学校和办公室的人工耳蜗和助听器佩戴时间的数据 社区。 R01 计算方法包括机器学习来检测社交实例 课堂上的接触以及儿童和教师/干预者的发声。父 R01 结果 正在进行的包容性课堂研究表明，儿童在课堂上的发声 与同龄人和老师的社会接触与语言发展呈正相关 有和没有听力损失的孩子。虽然客观方法具有巨大的潜力 改善儿童的长期沟通，他们提出与参与相关的道德问题 包括（纵向）研究、偶然发现和结果返回。研究人员有 开始讨论多小时音频和位置跟踪的道德规范以及相关的压力源 具有数据记录功能。然而，人们对大行为数据的道德层面知之甚少 现实世界环境中的集合。补充 Parent R01 的计算方法 通过对这些问题提出的道德问题进行定性调查来理解相互作用 方法有创新。该增刊专注于生物伦理学研究，将显着 通过追求 2 个具体目标，增加母体 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注点 关于采用多模式客观测量儿童和成人行为的研究 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 R01 参与者以及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回给参与者。 目标 2. 制定解决与参与相关的道德问题的政策建议， 使用客观行为衡量标准进行研究的参与度和结果回报。主题 从半结构化访谈的定性分析中得出的信息将告知 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， 为在现实世界环境中使用客观方法的研究制定拟议的道德准则。 2