CBTN

Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement

Published in
Neoplasia
on
Angela Waanders, Alex Brown, Nadine R. Caron, Alexa Plisiewicz, Sean T. McHugh, Thinh Q. Nguyen, Kaitlin Lehmann, Jeffrey Stevens, Phillip J. Storm, Adam Resnick, Tom Belle Davidson, Sabine Mueller, Cassie Kline
Indigenous Inclusion
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Abstract

The survival rates for pediatric cancer patients have improved significantly, but there are still significant disparities among underrepresented racial and ethnic groups. To address this issue, the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and Children's Brain Tumor Network (CBTN) created a Diversity, Equity, and Inclusion (DEI) working group in 2020. The DEI working group is committed to providing sustainable data-driven solutions to improve access to care for all pediatric patients with central nervous system tumors, as well as promoting diversity within the research community. The group is organizing educational sessions to address DEI topics in pediatric research and clinical care, with a focus on pediatric neuro-oncology. In April 2022, the group moderated a panel of experts on Indigenous Peoples’ rights and participation in clinical research activities. The goal of this paper is to provide the scientific community with a perspective on how to prioritize the inclusion of Indigenous Peoples in research with cultural sensitivity and the intention of improving patient outcomes regardless of their race, ethnicity, or socioeconomic background.

Acknowledgements

The authors would like to deeply thank Drs. Malerba, Caron, and Brown for providing insight and education during the panel presentation. Additionally, we want to sincerely thank the Drs. Gracelyn Smallwood and Mark Wenitong for their support and guidance. We are also incredibly grateful to Caitlyn Barrett for her contributions to reviewing the panel recording and assisting with the initial draft of this work and Margetta Thomas, Judi Lee, and Tiffani Copeland at CureSearch for Children's Cancer for reviewing and providing edits to the content. Our gratitude also goes out to Rachael Cassells, without whom this panel may not have been possible, the full PNOC/CBTN Diversity, Equity, and Inclusion (DEI) Working Group, the leadership of PNOC and CBTN, and all DEI members for prioritizing diversity, equity and inclusion in the consortia and leading this panel. Finally, our sincere appreciation to the brave Indigenous leaders that are creating space for Indigenous Peoples to drive genomic and clinical research that meets their needs.