UA Research Project: Developing policy recommendations: Indigenous leader and individuals' perspectives on research, governance, and data sharing in Arizona

项目摘要：研究项目1--将研究与政策联系起来：土著领导人和 亚利桑那州个人对研究、治理和数据共享的看法 土著人民对收集、储存和使用 样本和数据。原住民个人和社区对生物银行的看法研究 在新西兰奥蒂亚罗亚，加拿大，阿拉斯加和夏威夷发现了许多与道德，政策， 此外，还需要加强土著人民的能力，以及需要承认土著在样本/数据治理方面的权利和利益。 在与大学-部落伙伴关系合作者的研讨会上，以及一系列关于部落健康的采访中 专业人士、政策专家和部落首领，受访者主题包括：承认部落的重要性 主权；使用部落研究审查程序；许多部落之间的观点，即知识和 知识产权属于集体而不是个人；数据等科学实践 共享可能不符合一个部落的最佳利益；以及对更丰富和持续的数据讨论的持续需求 访问、管理和共享。加强部落数据治理和加强其他机构 在他们的政策中应用本地数据治理变得越来越重要，因为生物医学和 基因组学研究正朝着广泛的数据共享政策迈进。解决历史上存在的障碍 受阻于伦理研究实践，我们需要更好地理解研究、数据和 样本治理。这项研究提案将亚利桑那州NARCH团队的部落间委员会与 在NARCH CAB和一位国际专家的指导下，亚利桑那大学的研究人员- 从业员谘询委员会。我们应用创新的本地数据治理框架来评估 这将有助于了解个人的看法，并审查部落的规范和惯例。我们的长期目标是加强部落数据 亚利桑那州的治理。我们的研究目标是审查土著标本的部落规范和惯例 和数据治理，并评估土著领导人和个人对研究的看法， 治理和数据共享，为制定部落数据治理政策和做法提供信息 亚利桑那州。我们假设受访者将确认承认部落为主权的重要性。 许多人会将知识和知识产权视为属于集体集团，而不是 而不是分散的个人；需要关于土著数据的政策、做法和培训 数据访问、管理和共享等治理主题。我们计划完成我们的研究 目的通过追求以下三个具体目标：目标1：分析现有文献并研究 部落标本/数据存储政策。目标2：评估土著个人对(一)研究、(二)的意见 治理，以及(Iii)数据共享。目标3：评估部落首领和项目主管对(一)的意见 研究、(Ii)治理和(Iii)数据共享。目标4：制定样本和数据政策建议 对于部落和其他实体。所有调查结果和成果将与部落首领、项目主任、 学者和其他利益相关者通过会议、会议、政策简报和手稿。

PROJECT SUMMARY: RESEARCH PROJECT 1 – Linking Research to Policy: Indigenous leaders’ and individuals’ perspectives on research, governance, and data sharing in Arizona Indigenous Peoples have specific and longstanding concerns regarding the collection, storage, and use of specimens and data. Research on the perspectives of Indigenous individuals and communities on biobanking in Aotearoa New Zealand, Canada, Alaska, and Hawaii has found many issues related to ethics, policy, capacity, and a need for the recognition of Indigenous rights and interests for the governance of samples/data. In a workshop with collaborators of a university-tribal partnership and a set of interviews of tribal health professionals, policy experts, and tribal leaders, respondents themes included: importance of recognizing tribal sovereignty; the use of tribal research review processes; the view among many tribes that knowledge and intellectual property belong to the collective rather than to an individual; that scientific practices such as data sharing may not be in a tribe’s best interest; and the ongoing need for richer and continued discussion of data access, management, and sharing. Bolstering tribal data governance and enhancing other institutions application of Indigenous data governance in their policies becomes increasingly important as biomedical and genomics research moves toward broad data sharing policies. To address barriers that historically have impeded ethical research practices, we need to better understand Indigenous norms for research, data, and specimen governance. This research proposal connects the Inter Tribal Council of Arizona NARCH team with researchers at the University of Arizona under the guidance of the NARCH CAB and an international expert- practitioner Advisory Board. We apply an innovative Indigenous data governance framework to assess individuals’ perceptions and to review tribal norms and practices. Our long-term goal is to enhance tribal data governance in Arizona. Our research objective is to review tribal norms and practices for Indigenous specimen and data governance, and to assess Indigenous leaders’ and individuals’ perspectives on research, governance, and data sharing to inform the development of tribal data governance policies and practices in Arizona. We hypothesize that respondents will identify the importance of recognizing tribes as sovereign nations; that many will view knowledge and intellectual property as belonging to the collective group rather than to discrete individuals; and that there is a need for policies, practices, and trainings on Indigenous data governance topics such as data access, management, and sharing. We plan to accomplish our research objective by pursuing the following three specific aims: Aim 1: Analyze existing documents and research on tribal specimen/data storage policies. Aim 2: Assess Indigenous individuals’ opinions on (i) research, (ii) governance, and (iii) data sharing. Aim 3: Assess tribal leaders’ and program directors’ opinions on (i) research, (ii) governance, and (iii) data sharing. Aim 4: Develop specimen and data policy recommendations for tribes and other entities. All findings and outputs will be shared with tribal leaders, program directors, scholars, and others stakeholders via meetings, conferences, policy briefs, and manuscripts.