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

科学研究人员对土著社区的参与充斥着科学不端行为和缺乏对参与者及其社区的直接利益的例子。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参与研究过程和社区成员提供培训和工具，以指导他们的社区做出有关研究的知情决策。SING的校友和附属教师通过研讨会组织起来，向一般科学界提出有关当前科学参与框架的伦理问题，并提高土著人民在基因组学研究中的集体声音。然而，SING在为土著社区基因组学研究的参与者提供信息和建立土著科学家合作网络的使命方面的影响还没有得到明确的测试。本研究定义了SING在形成研究观点和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。像SING这样的培训项目的长期评估还没有进行过深入的研究，因此它可以作为确定短期科学培训项目有效性的模型。认识到基因组研究是未来医学、科学和转化研究的固有内容，土著人民的参与和参与是重要的，而新移民组织在促进这种参与方面的作用是无与伦比的。在这个项目中，研究人员通过焦点小组调查和社会网络分析，通过激发过去的SING参与者和教师对基因组科学和伦理参与的看法和理解，客观地衡量了SING项目的影响。具体而言，该项目将通过以下方式吸引新学院校友和参与者：1)阐明土著对基因研究和学术的看法；2)定义新学院在土著基因组学学者之间发起的互动和影响；3)为公众和新学院校友开发和提供特定主题的培训。这项工作的发现将为SING项目的现场培训和一般科学界的参与提供信息，以影响研究方法、奖学金和公共政策。该项目由BIO理事会通过ER2计划资助。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

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.