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: 10493143
• 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/10493143
• 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; 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 Project Summaries; 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

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：土著领导者和 个人对亚利桑那州研究，治理和数据共享的看法 土著人民在收集，存储和使用方面有具体而长期的关注 标本和数据。关于土著人和社区关于生物库的观点的研究 在新西兰的Aotearoa，加拿大，阿拉斯加和夏威夷发现了许多与道德，政策，政策相关的问题 能力，以及对样本/数据治理的土著权利和利益的认可。 在与大学部落合作伙伴关系的合作者和部落健康的采访中 专业人士，政策专家和部落领导人，受访者主题包括：认可部落的重要性 主权;使用部落研究审查过程；知道和 知识产权属于集体而不是个人；诸如数据之类的科学实践 分享可能不符合部落的最大利益；以及对数据的持续富裕和继续讨论的需求 访问，管理和共享。加强部落数据治理并增强其他机构 在其政策中应用土著数据治理的应用越来越重要，就像生物医学和 基因组学研究朝着广泛的数据共享政策发展。解决历史上的障碍 阻碍道德研究实践，我们需要更好地了解研究，数据和 标本治理。这项研究建议将亚利桑那州纳克团队的部落委员会与 亚利桑那大学的研究人员在Narch Cab的指导下和国际专家 从业者顾问委员会。我们应用创新的土著数据治理框架来评估 个人的看法并审查部落规范和实践。我们的长期目标是增强部落数据 亚利桑那州的治理。我们的研究目标是回顾土著标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， 治理以及数据共享，以告知部落数据治理政策和实践的制定 亚利桑那。我们假设受访者将确定承认部落为主权的重要性 国家许多人会将知识和知识产权视为属于集体群体的知识和知识产权 而不是离散的个体；并且需要对土著数据的政策，实践和培训 治理主题，例如数据访问，管理和共享。我们计划完成研究 通过追求以下三个具体目标，目标：目标1：分析现有文件和研究 部落标本/数据存储策略。目标2：评估土著人对（i）研究的看法，（ii） 治理和（iii）数据共享。目标3：评估部落领导者和计划董事对（i）的意见 研究，（ii）治理和（iii）数据共享。目标4：制定标本和数据政策建议 对于部落和其他实体。所有调查结果和输出将与部落领导人，计划董事， 学者和其他利益相关者通过会议，会议，政策摘要和手稿。