Bioethics of Archival Human Temporal Bone Collections

项目摘要 在研究约翰霍普金斯的人类颞骨组织学切片档案的历史时， 在20世纪初到中期的采购中，出现了一些关于历史和道德的问题， 在不太复杂的时期获得死后颞骨标本的同意过程 比今天的标准。此外，我们的收藏包括某些群体的过度代表性 在历史上被边缘化的病人谁可能已经受到不同的生活条件，结构 不平等和医疗。我们将考虑历史、环境、地理、社会和 可能导致对非白人个人、妇女、个人的不同待遇的经济因素 残疾人（特别是听力和平衡障碍者）、经济困难者， 移民，儿童和老年人在医疗环境中，因此，可能使这些 个体更有可能受到死亡，尸检，和颞骨收获。之前 使这些幻灯片的图像可以被我们小组以外的研究人员访问，我们将进行彻底的 评估这些伦理考虑因素，并为未来使用人类临时档案制定指导方针 骨组织学标本的研究。我们的具体目标是：1）进行系统的回顾性分析 20世纪人类颞骨捐赠和获取同意的历史和道德，以及2） 建立一个社区咨询委员会，为未来使用约翰霍普金斯时态的决定提供信息 骨组织学切片收集和未来颞骨采集和数据共享。确保我们的工作 通过不同的视角，我们将包括来自历史上边缘化群体（个人）的研究人员 妇女、非白人、移民、聋人/重听人）参与生物伦理学研究， 共同调查员和受训人员。我们计划让社区代表参与进来， 颞骨研究是在一个道德，包容性和文化敏感的方式进行，同时也工作 目标是生成更能代表多样化美国人口的耳病理学数据， 在过去。拟议的项目专门针对生物伦理学研究。

Project Summary In researching the history of the archival human temporal bone histology slide collection at Johns Hopkins procured in the early through mid 1900s, several questions arose regarding the history and ethics of the consenting process for obtaining postmortem temporal bone specimens during periods with less sophisticated practices than today's standards. Additionally, our collection includes an over-representation of certain groups of historically marginalized patients who may have been subject to disparate living conditions, structural inequities, and medical treatment. We will consider the historical, environmental, geographical, social, and economic factors that may have contributed to disparate treatment of non-white individuals, women, individuals with disabilities (in particular, hearing and balance disorders), economically disadvantaged individuals, immigrants, children, and the elderly in medical settings, and, consequently, may have rendered these individuals more likely to have been subject to death, postmortem autopsy, and temporal bone harvest. Prior to making images of these slides accessible to researchers outside our group, we will perform a thorough assessment of these ethical considerations and develop guidelines for the future use of archival human temporal bone histology specimens in research. Our specific aims are to 1) perform a systematic retrospective analysis of the history and ethics of consent for human temporal bone donation and procurement in the 1900s, and 2) develop a community advisory board to inform decisions regarding the future use of the Johns Hopkins temporal bone histology slide collection and future temporal bone harvest and data-sharing. To ensure that our work is informed by diverse perspectives, we will include researchers from historically marginalized groups (individuals who identify as women, non-white, immigrants, deaf/hard of hearing) in the bioethics research process, including both co-investigators and trainees. We plan to engage community representatives to ensure that human temporal bone research is performed in an ethical, inclusive, and culturally sensitive manner while also working toward the goal of generating otopathology data that is more representative of the diverse U.S. population than in the past. The proposed project is specific to bioethics research.