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原住民与临床和基因组研究中的包容性:了解历史并探索当代参与方式。

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

机构信息

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.

Australian National University and Telethon Kids Institute, Adelaide, SA, Australia.

出版信息

Neoplasia. 2023 Mar;37:100879. doi: 10.1016/j.neo.2023.100879. Epub 2023 Feb 2.

DOI:10.1016/j.neo.2023.100879
PMID:36738585
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9918407/
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.

摘要

尽管儿科癌症患者的生存率有了显著提高,但在代表性不足的少数族裔群体中仍存在明显的差距,这需要科学界和临床界加以缓解。为了解决这些差距并努力消除这些差距,太平洋儿科神经肿瘤学联盟 (PNOC) 和儿童脑瘤网络 (CBTN) 于 2020 年成立了一个多样性、公平性和包容性 (DEI) 工作组。DEI 工作组致力于改善所有中枢神经系统 (CNS) 肿瘤患儿的护理机会,扩大研究界的多样性,并提供可持续的数据驱动解决方案。为此,DEI 工作组旨在协调定期的教育课程,重点关注儿科研究和儿科患者临床护理中的关键 DEI 主题,重点是儿科神经肿瘤学。2022 年 4 月,该小组主持了一个专家小组,讨论原住民的权利和参与临床研究活动的问题。本文旨在为科学界提供一个视角,即如何以文化敏感性为重点优先考虑将原住民纳入研究,其目的不仅是提高代表性,而且无论患者的种族、民族或社会经济背景如何,都能改善患者的预后。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b225/9918407/65e9623f1be8/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b225/9918407/65e9623f1be8/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b225/9918407/65e9623f1be8/gr1.jpg

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