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

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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.