Building Trust to Enhance Diversity in Aging Research

项目摘要/摘要 《UMB NIA Parent R24》题为《建立信任以增强老龄化研究的多样性》是 专注于确定最有效率和最有效的研究人员招募和保留 针对三个代表性不足的研究人群的战略。确定因素是至关重要的。 与研究中的代表性不足有关。3-5与我们社区的经验 合作伙伴，特别是自SARS-CoV-2公共卫生紧急情况发生以来， 越来越多地对研究中的伦理问题表现出深刻的社区关切，特别是 与研究人员和学术界的研究后义务以及研究成果的退还有关。6-9 解决历史上代表性不足人群的生物伦理问题需要 创新、值得信赖和社区驱动的方法。这项研究将集中在衰老方面。 非洲裔美国人对毕业后义务和研究成果返还的看法，他们 研究人员和研究中的伦理关切和信任/可信度。这次调查， 与生物伦理研究相关，与父母拨款和NIA的目标/目的一致 使命、目标和目的，特别是其战略计划的目标F和目的。这个 具体目标是：目标1：征求老年非裔美国人对研究的看法 非裔美国老龄参与者及其社区和社区的参与 对学习后义务和研究成果返还的看法。；目标2A：评估老龄化如何 非洲裔美国人和社区成员解释了对学习后义务的期望 根据贝尔蒙报告的三项原则；目标2B：调查对历史的看法 通过案例研究分析研究事件及其对研究参与的影响 讲故事，以进一步确定参与者对结果返回、学习后义务和 老龄化研究中的可信性。案例研究将包括：案例1：亨丽埃塔夫人缺乏 尊重人的原则；案例2：塔斯基吉未经治疗的梅毒的PHS研究， 阿拉巴马州慈善/非恶意原则；病例3：遗传病因学 基于正义原则的非裔美国男孩攻击行为研究。 从这个项目中学到的经验教训将为科学、临床研究和未来提供支持和信息 生物伦理学和研究伦理学的政策制定。该项目有可能增加 将老年非裔美国人纳入(招募和保留)生物医学和临床 研究。这可能会填补一个重要的道德空白，因为缺乏关于后 大多数机构和IRBs的学习关怀/义务和成果返还。

PROJECT SUMMARY/ABSTRACT The UMB NIA Parent R24 entitled “Building Trust to Enhance Diversity in Aging Research” is focused on determining the most efficient and effective research recruitment and retention strategies for three underrepresented study populations. It is essential to identify factors associated with the under-representation of in research.3–5 Experiences with our community partners, especially since the occurrence of the SARS-CoV-2 public health emergency, increasingly show profound community concerns with ethical issues in research, particularly related to post-study obligations of researchers and academia and return of research resuts.6–9 Addressing bioethical concerns of historically under-represented populations requires innovative, trustworthy, and community-driven approaches . This study will focus on aging African Americans’ views on post-study obligations and views on return of research results, their ethical concerns and trust/trustworthiness in researchers and research. This investigation, related to bioethical research, is consistent with the goals/aims of the Parent grant and NIA’s mission, goals, and objectives, particularly Goal F and objectives of its Strategic Plan. The specific aims are to: Aim 1: Elicit aging African Americans’ views related to research participation for African American Aging participants and their communities and community views on post-study obligations and return of research results. ; Aim 2A: Assess how aging African Americans and community members interpret expectations for post-study obligations according to the three principles of the Belmont report.; Aim 2B: Investigate views on historical research occurrences and their influence on research participation through case studies utilizing storytelling to further determine participant views on return of results, post-study obligations and trustworthiness in Aging Research. Case studies will include: Case 1: Mrs. Henrietta Lacks for principle of respect for persons; Case 2: PHS Study of Untreated Syphilis in Tuskegee, Alabama for principle of beneficence/nonmaleficence; Case 3: Genetic etiology of aggressive behavior study in African American boys for principle of justice. Lessons learned from this project will support and inform science, clinical research and future policy development in bioethics and research ethics. The project has potential to increase the inclusion (recruitment and retention) of aging African Americans in biomedical and clinical research. This could fill an important ethical gap given the absence of formal policies on post- study care/obligations and return of results in a majority of institutions and IRBs.