Cargando…

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

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 Neu...

Descripción completa

Detalles Bibliográficos
Autores principales: Waanders, Angela, Brown, Alex, Caron, Nadine R., Plisiewicz, Alexa, McHugh, Sean T., Nguyen, Thinh Q., Lehmann, Kaitlin, Stevens, Jeffrey, Storm, Phillip J., Resnick, Adam, Davidson, Tom Belle, Mueller, Sabine, Kline, Cassie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Neoplasia Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9918407/
https://www.ncbi.nlm.nih.gov/pubmed/36738585
http://dx.doi.org/10.1016/j.neo.2023.100879
_version_ 1784886600455421952
author Waanders, Angela
Brown, Alex
Caron, Nadine R.
Plisiewicz, Alexa
McHugh, Sean T.
Nguyen, Thinh Q.
Lehmann, Kaitlin
Stevens, Jeffrey
Storm, Phillip J.
Resnick, Adam
Davidson, Tom Belle
Mueller, Sabine
Kline, Cassie
author_facet Waanders, Angela
Brown, Alex
Caron, Nadine R.
Plisiewicz, Alexa
McHugh, Sean T.
Nguyen, Thinh Q.
Lehmann, Kaitlin
Stevens, Jeffrey
Storm, Phillip J.
Resnick, Adam
Davidson, Tom Belle
Mueller, Sabine
Kline, Cassie
author_sort Waanders, Angela
collection PubMed
description 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.
format Online
Article
Text
id pubmed-9918407
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher Neoplasia Press
record_format MEDLINE/PubMed
spelling pubmed-99184072023-02-13 Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement Waanders, Angela Brown, Alex Caron, Nadine R. Plisiewicz, Alexa McHugh, Sean T. Nguyen, Thinh Q. Lehmann, Kaitlin Stevens, Jeffrey Storm, Phillip J. Resnick, Adam Davidson, Tom Belle Mueller, Sabine Kline, Cassie Neoplasia Pediatric Brain Tumor 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. Neoplasia Press 2023-02-02 /pmc/articles/PMC9918407/ /pubmed/36738585 http://dx.doi.org/10.1016/j.neo.2023.100879 Text en © 2023 The Authors. Published by Elsevier Inc. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Pediatric Brain Tumor
Waanders, Angela
Brown, Alex
Caron, Nadine R.
Plisiewicz, Alexa
McHugh, Sean T.
Nguyen, Thinh Q.
Lehmann, Kaitlin
Stevens, Jeffrey
Storm, Phillip J.
Resnick, Adam
Davidson, Tom Belle
Mueller, Sabine
Kline, Cassie
Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement
title Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement
title_full Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement
title_fullStr Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement
title_full_unstemmed Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement
title_short Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement
title_sort indigenous peoples and inclusion in clinical and genomic research: understanding the history and navigating contemporary engagement
topic Pediatric Brain Tumor
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9918407/
https://www.ncbi.nlm.nih.gov/pubmed/36738585
http://dx.doi.org/10.1016/j.neo.2023.100879
work_keys_str_mv AT waandersangela indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT brownalex indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT caronnadiner indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT plisiewiczalexa indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT mchughseant indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT nguyenthinhq indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT lehmannkaitlin indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT stevensjeffrey indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT stormphillipj indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT resnickadam indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT davidsontombelle indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT muellersabine indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement
AT klinecassie indigenouspeoplesandinclusioninclinicalandgenomicresearchunderstandingthehistoryandnavigatingcontemporaryengagement