Abolins-Thompson Helena, Henare Kimiora L, Simonson Bridget, Chaffin Mark, Ellinor Patrick T, Henry Claire, Haimona Mairarangi, Aitken Jake, Parai Taku, Elkington Bianca, Rongo Michael, Danielson Kirsty M, Leask Megan P
Department of Surgery and Anesthesia, University of Otago Wellington, Wellington, New Zealand.
Faculty of Medical and Health Sciences, Molecular Medicine and Pathology, Waipapa Taumata Rau, University of Auckland, Auckland, New Zealand.
Front Res Metr Anal. 2024 Nov 5;9:1468400. doi: 10.3389/frma.2024.1468400. eCollection 2024.
Indigenous communities globally are inequitably affected by non-communicable diseases such as cancer and coronary artery disease. Increased focus on personalized medicine approaches for the treatment of these diseases offers opportunities to improve the health of Indigenous people. Conversely, poorly implemented approaches pose increased risk of further exacerbating current inequities in health outcomes for Indigenous peoples. The advancement of modern biology techniques, such as three-dimensional (3D) models and next generation sequencing (NGS) technologies, have enhanced our understanding of disease mechanisms and individualized treatment responses. However, current representation of Indigenous peoples in these datasets is lacking. It is crucial that there is appropriate and ethical representation of Indigenous peoples in generated datasets to ensure these technologies can be used to maximize the benefit of personalized medicine for Indigenous peoples.
This project discusses the use of 3D tumor organoids and single cell/nucleus RNA sequencing to study cancer treatment responses and explore immune cell roles in coronary artery disease. Using key pillars from currently available Indigenous bioethics frameworks, strategies were developed for the use of Māori participant samples for live tissue and sequencing studies. These were based on extensive collaborations with local Māori community, scientific leaders, clinical experts, and international collaborators from the Broad Institute of MIT and Harvard. Issues surrounding the use of live tissue, genomic data, sending samples overseas and Indigenous data sovereignty were discussed.
This paper illustrates a real-world example of how collaboration with community and the incorporation of Indigenous worldviews can be applied to molecular biology studies in a practical and culturally responsive manner, ensuring fair and equitable representation of Indigenous peoples in modern scientific data.
全球范围内，原住民社区在癌症和冠状动脉疾病等非传染性疾病方面受到的影响存在不平等现象。对这些疾病治疗的个性化医疗方法的更多关注为改善原住民健康提供了机会。相反，实施不当的方法会增加进一步加剧原住民目前健康结果不平等的风险。现代生物学技术的进步，如三维（3D）模型和下一代测序（NGS）技术，增强了我们对疾病机制和个体化治疗反应的理解。然而，这些数据集中目前缺乏原住民的代表性。至关重要的是，在生成的数据集中要有原住民的适当且符合伦理的代表性，以确保这些技术能够用于为原住民最大化个性化医疗的益处。
本项目讨论了使用3D肿瘤类器官和单细胞/细胞核RNA测序来研究癌症治疗反应，并探索免疫细胞在冠状动脉疾病中的作用。利用当前可用的原住民生物伦理框架的关键支柱，制定了将毛利人参与者样本用于活组织和测序研究的策略。这些策略基于与当地毛利社区、科学领袖、临床专家以及麻省理工学院和哈佛大学布罗德研究所的国际合作者的广泛合作。讨论了围绕使用活组织、基因组数据、将样本送往海外以及原住民数据主权的问题。
本文阐述了一个现实世界的例子，说明与社区的合作以及纳入原住民世界观如何能够以切实可行且具有文化响应性的方式应用于分子生物学研究，确保原住民在现代科学数据中得到公平和公正的代表性。
