与土著人民开展文化上安全和符合伦理的生物标记物和基因组研究--范围综述。

Rebecca Dal Pra, Penny O'Brien, Huong X T Nguyen, Joanne Luke, Robyn A Smith, Adrienne Withall, Kylie Radford, Louise M Lavrencic, Rosie Watson, Leon Flicker, Dina Logiudice
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引用次数: 0

摘要

背景:全球原住民在生物标记物、基因组和生物库研究中的代表性仍然不足。本研究旨在确定澳大利亚、奥特亚罗瓦/新西兰、加拿大和美国的土著居民在文化上安全且符合伦理的生物标记物和基因组研究的核心内容:方法:利用电子数据库 MEDLINE、EMBASE、PsychINFO、CINAHL 和 Global Health,采用系统检索策略进行了范围界定审查。关键检索词包括 "生物标志物 "和 "基因组学",涉及土著居民的研究与尊重、主权、治理和现行政策等伦理和法律原则有关。对 2000 年至 2023 年 8 月 1 日期间发表的原始研究报告进行了系统性审查。确定了文化安全和伦理研究过程的组成部分,并对其进行了描述性综合。使用土著和托雷斯海峡岛民质量评估工具从土著视角对纳入研究的质量进行了评估:结果:从 17 项研究中确定了七项相互关联的研究内容,作为提高生物标记物和基因组研究文化安全性的核心流程。其中包括建立关系和社区参与、学习、研究协调、后勤、同意、样本和生物样本、生物库结构和保护以及政策。在与土著居民建立和开展生物标记物和基因组研究的过程中,强调了确保自决权、所有权和决策权的重要性:本范围界定综述中确定的有助于生物标记物和基因组研究过程文化安全的要素已汇集成一个理论框架,用于指导研究实践。土著居民和社区需要进行进一步评估,以适当调整这一框架,使其适合当地使用,从而促进研究过程的文化安全,并最大限度地减少土著居民参与生物标记物和基因组研究的障碍。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.

Background: Indigenous peoples globally continue to be underrepresented in biomarker, genomic, and biobanking research. The aim of this study was to identify core components of culturally safe and ethical biomarker and genomic research with Indigenous peoples in Australia, Aotearoa/New Zealand, Canada and the USA.

Methods: A scoping review with a systematic search strategy was conducted utilising electronic databases MEDLINE, EMBASE, PsychINFO, CINAHL and Global Health. Key search terms included 'biomarkers' and 'genomics' research involving Indigenous peoples in relation to ethical and legal principles of respect, sovereignty, governance and existing policies. Original research studies published from the year 2000 to the 1st of August 2023 were reviewed in a systematic manner. Components of culturally safe and ethical research processes were identified and synthesised descriptively. The quality of included studies was assessed using an Aboriginal and Torres Strait Islander Quality Appraisal Tool through an Indigenous lens.

Results: Seven interrelated research components were identified from seventeen studies as core processes to enhance the cultural safety of biomarker and genomic research. These included building relationships and community engagement, learning, research coordination, logistics, consent, samples and biospecimens, biobank structures and protections and policy. The importance of ensuring self-determination, ownership and decision-making power is emphasised in processes to establish and conduct biomarker and genomic research with Indigenous peoples.

Conclusions: Components that contribute to the cultural safety of biomarker and genomic research processes identified in this scoping review were assembled into a theoretical framework to guide research practice. Further evaluation is required by Indigenous peoples and communities to appropriate and adapt this framework for local use to promote the cultural safety of research processes and minimise barriers to Indigenous peoples' participation in biomarker and genomic research.

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