Navajo Genetic Toolkit: A Culturally Tailored Guide for Engagement and Oversight of Genetic Research

纳瓦霍遗传工具包：基因研究参与和监督的文化定制指南

• 批准号: 10223751
• 负责人: Katrina G Claw
• 金额: $ 10.94万
• 依托单位: DINE' COLLEGE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-23 至 2025-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10223751
• 关键词: Address; Adopted; Benefits and Risks; Case Study; Communication; Communities; Community Health Education; Community Outreach; Country; Data; Development; Education; Education and Outreach; Educational Materials; Enrollment; Ethics; Evaluation; Feedback; Fostering; Foundations; Future; General Population; Genetic; Genetic Diseases; Genetic Research; Genetic study; Glossary; Goals; Health; Human; Individual; Knowledge; Language; Lead; Lifting; Measures; Medical; Methods; Native American Research Center for Health; Navajo; Outcome; Philosophy; Policies; Policy Maker; Prevention; Protocols documentation; Regulation; Research; Research Personnel; Research Proposals; Resources; Rest; Role; Science; Science Policy; Scientist; Students; Surveys; Terminology; Testing; Training; Tribes; Work; base; community engaged research; digital; effectiveness evaluation; effectiveness testing; empowered; evidence base; experience; health disparity; health equity promotion; health literacy; improved; literacy; member; novel; outreach program; research study; social; social implication; social media; symposium; tool; uptake

PROJECT SUMMARY/ABSTRACT The Navajo Nation is currently re-examining a moratorium on genetic research studies to adopt a policy to permit certain types of genetic research. Navajo people suffer disproportionately from high rates of genetic diseases and disorders and experience more health disparities compared to the general population. Due in part to underrepresentation in genetic research studies, there has been limited research on genetic diseases and disorders, treatment, and prevention. There is a need for culturally-tailored guidance for Navajo people and policy makers to understand, assess, and evaluate proposed genetic research with the Navajo community. The proposed project will develop and test the effectiveness of multiple resources aimed at increasing genetics knowledge and ways to assess proposed genetic studies. First, we will develop a genetic toolkit and glossary of terminology to enhance the ways in which Navajo people and Navajo Nation Human Research Review Board (NNHRRB) assess genetic research along with tools to discuss and understand the concepts. Second, we will create digital content for the Navajo community regarding genetic research protocols and education, thereby strengthening the evaluation and assessment of appropriate genetic research while integrating cultural considerations. Third, we will develop a framework to orient concepts about genetics based on fundamentals of Navajo culture and philosophy to engage traditional people and the community on genetic research. Finally, we will host a conference to engage the larger Navajo community in all of the tools that we develop and in deeper discussions about genetics. The project will solicit specific feedback from cultural experts as well as medical professionals to articulate salient ethical, cultural, and social implications of genetic research in the development of materials to support broader public discussions about the risks and benefits of genetic research in the Navajo Nation. The overall goal of this project is to develop tools to improve how Navajo people converse about genetics, thus allowing for more discussions that could strengthen knowledge and robust guidance for assessing genetic research protocols. We hypothesize that culturally-informed tools will increase uptake in how people use materials, thus increasing public understanding about genetics and empowering individuals to engage in meaningful discussions about genetics and research participation. The unique features of this work are the incorporation of Navajo understandings of genetics as well as extensive community input and community- engaged research. The lead investigators and vast majority of the research team are enrolled members of the Navajo tribe. This work can foster the Navajo Nation in discussions about genetics and these tools may be adapted by other tribes, thus having potential significant impact on the rest of Indian Country.

项目概要/摘要 纳瓦霍族目前正在重新审查暂停基因研究的决定，以采用 允许某些类型的基因研究的政策。纳瓦霍人遭受高比例的痛苦 遗传疾病和失调，并且与普通人群相比，存在更多的健康差异。 部分由于遗传研究代表性不足，对遗传的研究有限。 疾病和失调、治疗和预防。需要为纳瓦霍人提供适合文化的指导 人们和政策制定者了解、评估和评估拟议的纳瓦霍基因研究 社区。 拟议项目将开发和测试多种资源的有效性，旨在提高 遗传学知识和评估拟议遗传学研究的方法。首先，我们将开发一个遗传工具包 术语词汇表，以增强纳瓦霍人和纳瓦霍族人类研究的方式 审查委员会 (NNHRRB) 评估基因研究以及讨论和理解概念的工具。 其次，我们将为纳瓦霍社区创建有关基因研究协议和 教育，从而加强对适当遗传研究的评价和评估，同时 整合文化考虑。第三，我们将开发一个框架来定位基于遗传学的概念 纳瓦霍文化和哲学的基础知识，让传统人民和社区参与遗传研究 研究。最后，我们将举办一次会议，让更大的纳瓦霍社区参与我们开发的所有工具。 发展并深入讨论遗传学。该项目将征求文化界的具体反馈 专家和医学专业人士阐明遗传的显着伦理、文化和社会影响 研究材料开发，以支持更广泛的公众讨论风险和收益 纳瓦霍族的基因研究。 该项目的总体目标是开发工具来改善纳瓦霍人的交谈方式 遗传学，从而可以进行更多讨论，从而加强知识和强有力的指导 评估基因研究方案。我们假设文化信息工具将增加对 人们如何使用材料，从而增加公众对遗传学的了解并赋予个人权力 参与有关遗传学和研究参与的有意义的讨论。本作的独特之处 工作结合了纳瓦霍人对遗传学的理解以及广泛的社区投入和 社区参与的研究。主要研究人员和绝大多数研究团队成员均已注册 纳瓦霍部落的成员。这项工作可以促进纳瓦霍族对遗传学和这些领域的讨论 其他部落可能会采用这些工具，从而对印第安地区的其他地区产生潜在的重大影响。