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

科学研究人员与土著社区的接触充斥着科学不端行为的例子，对参与者及其社区缺乏直接利益。在基因组学（SING）短期课程的土著人民暑期实习提供培训和工具，为早期职业土著科学家从事研究过程和社区成员，以指导他们的社区作出有关研究的知情决定。SING和附属学院的校友通过研讨会组织了围绕科学参与的一般科学界的当前框架的伦理问题，并提高土著人民在基因组学研究中的集体声音。然而，SING在其使命中的影响尚未得到明确的测试，该使命是为土著社区的基因组学研究参与者提供信息，并建立合作的土著研究人员网络。本研究定义了SING在塑造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中的作用和影响。长期评估的培训计划，如SING没有被调查到任何大的程度，使这可以作为一个模型，以确定短期课程的科学培训计划的有效性，认识到基因组研究是固有的未来的医学，科学和转化研究，包容和参与的土著人民是重要的，SING的作用，以促进这种参与是无与伦比的。在这个项目中，调查人员通过焦点小组调查和社会网络分析，客观地衡量SING计划的影响，方法是引出过去SING参与者和教师对基因组科学和伦理参与的看法和理解。具体而言，该项目通过以下方式吸引SING校友和参与者：1）阐明土著对遗传研究和奖学金的看法，2）定义SING在土著基因组学学者中发起的互动和影响，以及3）为公众和SING校友开发和提供特定主题的培训。这项工作的结果将为SING计划的人员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董事会通过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.