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

By FYH News Team

Published on February 7, 2023

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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.

doi: 10.1016/j.neo.2023.100879.

Online ahead of print.

Affiliations

¹ Department of Hematology, Oncology, and Stem Cell Transplant, Ann & Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA; Center for Data-Driven Discovery in Biomedicine, Division of Neurosurgery, Children’s Hospital of Philadelphia, Philadelphia, PA, USA.
² Australian National University and Telethon Kids Institute, Adelaide, SA, Australia.
³ University of Northern British Columbia, Prince George, BC, Canada.
⁴ Center for Data-Driven Discovery in Biomedicine, Division of Neurosurgery, Children’s Hospital of Philadelphia, Philadelphia, PA, USA; Division of Neurosurgery, Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA.
⁵ Division of Pediatric Hematology/Oncology, University of Washington School of Medicine, Seattle Children’s Hospital, Seattle Children’s Research Institute, Seattle, WA, USA.
⁶ Division of Hematology-Oncology, Cancer and Blood Disease Institute and Department of Pediatrics, Children’s Hospital Los Angeles, Los Angeles, California, USA.
⁷ Department of Neurology, University of California San Francisco, San Francisco, CA, USA; Department of Neurological Surgery, University of California San Francisco, San Francisco, CA, USA; Department of Pediatrics, University of California San Francisco, San Francisco, CA, USA; University Children’s Hospital Zurich, Zurich, Switzerland.
⁸ Department of Pediatrics, Division of Oncology, Children’s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: klinec@chop.edu.

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Angela Waanders et al.

Neoplasia.

2023.

doi: 10.1016/j.neo.2023.100879.

Online ahead of print.

Authors

Affiliations

¹ Department of Hematology, Oncology, and Stem Cell Transplant, Ann & Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA; Center for Data-Driven Discovery in Biomedicine, Division of Neurosurgery, Children’s Hospital of Philadelphia, Philadelphia, PA, USA.
² Australian National University and Telethon Kids Institute, Adelaide, SA, Australia.
³ University of Northern British Columbia, Prince George, BC, Canada.
⁴ Center for Data-Driven Discovery in Biomedicine, Division of Neurosurgery, Children’s Hospital of Philadelphia, Philadelphia, PA, USA; Division of Neurosurgery, Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA.
⁵ Division of Pediatric Hematology/Oncology, University of Washington School of Medicine, Seattle Children’s Hospital, Seattle Children’s Research Institute, Seattle, WA, USA.
⁶ Division of Hematology-Oncology, Cancer and Blood Disease Institute and Department of Pediatrics, Children’s Hospital Los Angeles, Los Angeles, California, USA.
⁷ Department of Neurology, University of California San Francisco, San Francisco, CA, USA; Department of Neurological Surgery, University of California San Francisco, San Francisco, CA, USA; Department of Pediatrics, University of California San Francisco, San Francisco, CA, USA; University Children’s Hospital Zurich, Zurich, Switzerland.
⁸ Department of Pediatrics, Division of Oncology, Children’s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: klinec@chop.edu.

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Abstract

Keywords:

Clinical research; Diversity; Equity; Inclusion; Indigenous people; Pediatric neuro-oncology.

Conflict of interest statement

Declaration of Competing Interests The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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