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

项目摘要/摘要 纳瓦霍民族目前正在重新审查暂停基因研究的问题，以通过一项 允许某些类型的基因研究的政策。纳瓦霍人不成比例地遭受着高发病率的 与普通人群相比，遗传性疾病和失调症的发病率更高，健康差距更大。 部分由于在遗传学研究中代表性不足，对遗传学的研究有限。 疾病和障碍、治疗和预防。有必要为纳瓦霍人提供量身定做的文化指导 人们和政策制定者了解、评估和评估纳瓦霍人提议的基因研究 社区。 拟议的项目将开发和测试多种资源的有效性，旨在增加 遗传学知识和评估拟议基因研究的方法。首先，我们将开发一个基因工具包，并 加强纳瓦霍人和纳瓦霍民族人类研究方法的术语词汇 审查委员会(NNHRRB)评估基因研究以及讨论和理解这些概念的工具。 第二，我们将为纳瓦霍社区创建有关基因研究方案和 教育，从而加强对适当遗传研究的评价和评估，同时 整合文化考量。第三，我们将开发一个框架来定位基于遗传学的概念 关于纳瓦霍文化和哲学的基本原理，使传统的人和社区参与遗传 研究。最后，我们将主办一次会议，让更大的纳瓦霍社区参与我们的所有工具 发展和深入关于遗传学的讨论。该项目将征求文化部门的具体反馈意见 专家和医学专业人员阐明基因的显著伦理、文化和社会影响 研究开发材料，以支持更广泛的公众讨论 纳瓦霍民族的基因研究。 这个项目的总体目标是开发工具来改善纳瓦霍人谈论 遗传学，从而允许更多的讨论，以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理解，并赋予个人权力 参与关于遗传学和研究参与的有意义的讨论。它的独特之处在于 工作是纳入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。首席调查人员和绝大多数研究团队成员都被录取了 纳瓦霍部落的成员。这项工作可以促进纳瓦霍民族在遗传学和这些方面的讨论 工具可能会被其他部落采用，从而对印第安人国家的其他地区产生潜在的重大影响。

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.