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

亚利桑那大学研究项目：制定政策建议：土著领导人和个人对亚利桑那州研究、治理和数据共享的看法

• 批准号: 10700059
• 负责人: Stephanie Russo Carroll
• 金额: $ 21.55万
• 依托单位: INTER TRIBAL COUNCIL OF ARIZONA, INC.
• 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/10700059
• 关键词: Address; Alaska; Area; Arizona; Australia; Canada; Code; Collection; Communication; Communities; Conflict (Psychology); Data; Data Science; Data Storage and Retrieval; Development; Educational workshop; Equity; Ethics; Funding Opportunities; Future; Genomics; Goals; Guidelines; Hawaii; Health Professional; Health care facility; Indigenous; Individual; Infrastructure; Institution; Intellectual Property; International; Interview; Knowledge; Leadership; Link; Manuscripts; Native American Research Center for Health; New Zealand; Outcome; Output; Ownership; Perception; Persons; Policies; Privacy; Process; Recording of previous events; Regulation; Research; Research Ethics; Research Personnel; Research Project Grants; Research Proposals; Resources; Respondent; Rights; Role; Sampling; Scholarship; Specimen; Surveys; System; Training; Tribal Council; Tribes; Universities; biobank; care seeking; community engagement; data access; data sharing; design; informant; innovation; interest; intertribal; meetings; open data; policy recommendation; programs; symposium; tribal college; tribal health; tribal leader; tribal organization

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.

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 个人对亚利桑那州研究、治理和数据共享的看法 原住民对收集、储存和使用有具体和长期的关切 标本和数据。研究土著个人和社区对生物样本库的看法。 在新西兰、加拿大、阿拉斯加和夏威夷发现了许多与道德、政策、 能力，以及承认土著权利和利益对样本/数据治理的需要。 在与大学-部落伙伴关系的合作者举行的研讨会上以及对部落健康的一系列采访 专业人士、政策专家和部落领袖，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；许多部落认为知识和 知识产权属于集体而不是个人；数据等科学实践 共享可能不符合部落的最佳利益；并且持续需要更丰富和持续的数据讨论 支持部落数据治理并加强其他机构。 随着生物医学和生物技术的发展，本土数据治理在政策中的应用变得越来越重要。 基因组学研究转向广泛的数据共享政策，以解决历史上存在的障碍。 由于道德研究实践受到阻碍，我们需要更好地了解研究、数据和研究的土著规范 该研究提案将亚利桑那州部落间理事会 NARCH 团队与 亚利桑那大学的研究人员在 NARCH CAB 和国际专家的指导下 我们应用创新的本土数据治理框架来评估。 我们的长期目标是增强部落数据。 我们的研究目标是审查土著样本的部落规范和实践。 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，为部落数据治理政策和实践的制定提供信息 亚利桑那州，我们希望受访者能够认识到承认部落主权的重要性。 国家；许多人将知识和知识产权视为属于集体群体而不是 而不是离散个人；并且需要针对本土数据的政策、实践和培训 我们计划完成我们的研究，例如数据访问、管理和共享。 通过追求以下三个具体目标来实现目标： 目标 1：分析现有文献和研究 目标 2：评估土著个人对 (i) 研究、(ii) 的意见。 治理，以及 (iii) 数据共享 目标 3：评估部落领袖和项目主管对 (i) 的意见。 研究，(ii) 治理，以及 (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领导人、项目主管共享， 通过会议、会议、政策简报和手稿向学者和其他利益相关者传达。