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

科学研究人员参与土著社区活动的例子比比皆是，既有科学不端行为，也没有给参与者及其社区带来直接利益。土著人民基因组学暑期实习(SING)短期课程为早期职业的土著科学家提供培训和工具，以参与研究进程，并为社区成员指导其社区作出关于研究的明智决定。SING的校友和附属教员通过讲习班组织，向一般科学界介绍围绕当前科学参与框架的伦理关切，并提高土著人民在基因组研究中的集体发言权。然而，SING的任务是向土著社区的基因组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检验。这项研究确定了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很大程度的调查，因此不能作为确定短期课程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、科学和翻译研究的固有内容，纳入和参与土著人民是重要的，SING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SING参与者和教职员工对基因组科学和伦理参与的感知和理解，客观地衡量SING计划的影响。具体地说，该项目通过以下方式吸引SING校友和参与者：1)阐明关于遗传研究和学术的土著观点；2)确定SING在土著基因组学学者中发起的互动和影响；3)为普通公众和SING校友开发和提供专题培训。这项工作的结果将为SING计划的面对面培训以及普通科学界参与影响研究方法、学术和公共政策提供信息。该项目由BIO主管通过ER2计划提供资金。该奖项反映了NSF的法定使命，并通过使用基金会的智力优势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.