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

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*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

Despite significant improvements in pediatric cancer survival outcomes, there remain glaring disparities in under-represented racial and ethnic groups that warrant mitigation by the scientific and clinical community. To address and work towards eliminating such disparities, the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and Children's Brain Tumor Network (CBTN) established a Diversity, Equity, and Inclusion (DEI) working group in 2020. The DEI working group is dedicated to improving access to care for all pediatric patients with central nervous system (CNS) tumors, broadening diversity within the research community, and providing sustainable data-driven solutions. To this end, the DEI working group aims to coordinate regular educational sessions centered on critical DEI topics in pediatric research and clinical care of pediatric patients, with a focus on pediatric neuro-oncology. In April 2022, the group led a moderated panel of experts on Indigenous Peoples’ rights and participation in clinical research activities. The following paper serves to provide the scientific community a perspective on how to prioritize the inclusion of Indigenous Peoples in research with cultural sensitivity and with the intent of improving not only representation, but patient outcomes regardless of patient race, ethnicity, or socioeconomic background.

Original languageEnglish (US)
Article number100879
JournalNeoplasia (United States)
Volume37
DOIs
StatePublished - Mar 2023

Funding

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.

Keywords

  • Clinical research
  • Diversity
  • Equity
  • Inclusion
  • Indigenous people
  • Pediatric neuro-oncology

ASJC Scopus subject areas

  • Cancer Research

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