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.

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 土著人民对收集、储存和使用 标本和数据。研究土著个人和社区对生物库的看法 在新西兰、加拿大、阿拉斯加和夏威夷的奥特亚罗瓦， 能力，以及需要承认土著人民在样本/数据管理方面的权利和利益。 在与大学-部落伙伴关系的合作者的研讨会上， 专业人员，政策专家和部落领袖，受访者的主题包括： 主权;部落研究审查程序的使用;许多部落认为， 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;以及对数据进行更丰富和持续讨论的持续需求 访问、管理和共享。支持部落数据治理并加强其他机构 土著数据治理在其政策中的应用变得越来越重要， 基因组学研究朝着广泛的数据共享政策发展。为了解决历史上存在的障碍， 阻碍道德研究的做法，我们需要更好地了解土著规范的研究，数据， 标本治理。这项研究提案将亚利桑那州Numbers团队的部落间理事会与 亚利桑那大学的研究人员在NATIONAL CAB和一位国际专家的指导下， 从业者咨询委员会。我们采用创新的本土数据治理框架来评估 个人的看法，并审查部落规范和做法。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审查土著标本的部落规范和做法 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， 亚利桑那我们假设受访者会认同承认部落主权的重要性 许多人将知识和知识产权视为属于集体集团，而不是 而不是离散的个人;并且有必要制定有关土著数据的政策，实践和培训 治理主题，如数据访问、管理和共享。我们计划完成研究 目标1：分析现有文献，研究 部落样本/数据存储政策。目标2：评估土著个人对㈠研究，㈡ （三）数据共享。目标3：评估部落领导人和方案主任对（i）的意见 研究;（二）治理;（三）数据共享。目标4：制定样本和数据政策建议 为部落和其他实体。所有调查结果和产出将与部落领袖、项目主任、 学者和其他利益攸关方通过会议、大会、政策简报和手稿。