Building Trust to Enhance Diversity in Aging Research

项目概要/摘要 UMB NIA Parent R24题为“建立信任，以加强老龄化研究的多样性”， 专注于确定最有效和最有效的研究招聘和保留 针对三个代表性不足的研究人群的策略。必须确定 3 -5与我们社区的经验 合作伙伴，特别是自SARS-CoV-2突发公共卫生事件发生以来， 越来越多地显示出社会对研究中的伦理问题的深切关注， 关于研究人员和学术界研究后的义务以及研究成果的归还问题。 解决历史上代表性不足的人口的生物伦理问题需要 创新、可靠和社区驱动的方法。这项研究将集中在老龄化 非裔美国人对研究后义务的看法和对研究成果回报的看法， 研究人员和研究中的道德问题和信任/可信赖性。这次调查 与生物伦理学研究有关，与父母补助金和NIA的目标/目的一致 使命、目标和具体目标，特别是目标F和《战略计划》的具体目标。的 具体目标是：目标1：引出老龄化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 关于研究后义务和研究成果返还的意见。目标2A：评估衰老 非裔美国人和社区成员解释对学习后义务的期望 根据贝尔蒙特报告的三个原则。目标2B：调查对历史的看法 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、研究后义务和 衰老研究中的可信度案例研究将包括：案例1：亨里埃塔夫人缺乏 尊重人的原则;案例2：对塔斯基吉未经治疗的梅毒患者的PHS研究， 亚拉巴马州的有益/无害原则;病例3： 非裔美国男孩的攻击性行为研究。 从该项目中吸取的经验教训将支持和告知科学，临床研究和未来 制定生物伦理和研究伦理政策。该项目有可能增加 纳入（招募和保留）老龄非裔美国人在生物医学和临床 research.这可以填补一个重要的道德差距，因为缺乏关于员额分配的正式政策。 大多数机构和IRB的研究护理/义务和结果返回。

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.