Collaborative Research: Assessing the bioethical impacts of an Indigenous scholars network in genomics

合作研究：评估基因组学领域土著学者网络的生物伦理影响

• 批准号: 2401278
• 负责人: Matthew Anderson
• 金额: $ 24.69万
• 依托单位: University of Wisconsin-Madison
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-10-01 至 2026-09-30
• 项目状态: 未结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=2401278&HistoricalAwards=false
• 关键词: Collaborative; Research; Assessing; bioethical; impacts

Engagement of Indigenous communities by scientific researchers is riddled with examples of scientific misconduct and a lack of direct benefit to participants and their communities. The Summer internship for INdigenous peoples in Genomics (SING) short course offers training and tools for early career Indigenous scientists to engage in the research process and community members to guide their communities in making informed decisions about research. Alumni of SING and affiliated faculty have organized through the workshop to present ethical concerns around current frameworks of scientific engagement to the general scientific community and to raise the collective voice of Indigenous people in genomics research. However, the impact of SING in its mission to inform participants in genomics research in Indigenous communities and build out networks of collaborating Indigenous researchers have not been explicitly tested. This study defines the role and impact of SING in shaping views of research and incorporatingIndigenous researchers into scholarly networks among Indigenous alumni and faculty. Long-term assessment of training programs such as SING have not been investigated to any great extent such that this can serve as a model for determining the effectiveness of short course scientific training programs.Recognizing that genomic research is inherent in future medical, scientific, and translational research, the inclusion and involvement of Indigenous people is important and the role of SING to facilitate this engagement is unparalleled. In this project, the investigators objectively measure the impact of the SING program by eliciting the perceptions and understandings of genome science and ethics engagement of past SING participants and faculty through focus groups surveys, and social network analysis. Specifically, the project engages SING alumni and participants by 1) elucidating Indigenous perspectives on genetic research and scholarship, 2) defining interactions and influences initiated by SING among Indigenous genomics scholars, and 3) developing and delivering topic specific training for the general public and SING alumni. Findings from this work will inform in-person training for the SING program and engagement of the general scientific community to impact research approaches, scholarship, and public policy.This project was funded through the ER2 program by the BIO directorate.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.

科学研究人员对土著社区的参与充满了科学不当行为的例子，并且参与者及其社区缺乏直接利益。基因组学土著人民暑期实习 (SING) 短期课程为早期职业土著科学家提供参与研究过程的培训和工具，并为社区成员提供指导社区做出明智的研究决策的培训和工具。 SING 的校友和附属教师通过研讨会组织了研讨会，向广大科学界提出了围绕当前科学参与框架的伦理问题，并提高了原住民在基因组学研究中的集体声音。然而，SING 的使命是为土著社区基因组学研究参与者提供信息并建立土著研究人员合作网络，其影响尚未得到明确测试。这项研究界定了 SING 在塑造研究观点以及将土著研究人员纳入土著校友和教师之间的学术网络方面的作用和影响。对 SING 等培训计划的长期评估尚未得到广泛研究，因此无法作为确定短期科学培训计划有效性的模型。认识到基因组研究是未来医学、科学和技术领域所固有的在转化研究中，原住民的包容和参与非常重要，SING 在促进这种参与方面的作用是无与伦比的。在该项目中，研究人员通过焦点小组调查和社交网络分析，引出过去 SING 参与者和教师对基因组科学和伦理参与的看法和理解，客观地衡量 SING 计划的影响。具体来说，该项目通过以下方式吸引 SING 校友和参与者：1）阐明原住民对基因研究和学术的观点，2）定义 SING 在原住民基因组学学者中发起的互动和影响，以及 3）为公众和 SING 开发和提供特定主题的培训校友。这项工作的结果将为 SING 计划的现场培训以及广大科学界的参与提供信息，以影响研究方法、学术和公共政策。该项目由 BIO 理事会通过 ER2 计划资助。该奖项反映了 NSF 的法定使命，并通过使用基金会的智力价值和更广泛的影响审查标准进行评估，被认为值得支持。