Pra Rebecca Dal, O'Brien Penny, Nguyen Huong X T, Luke Joanne, Smith Robyn A, Withall Adrienne, Radford Kylie, Lavrencic Louise M, Watson Rosie, Flicker Leon, Logiudice Dina
Department of Medicine, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Royal Melbourne Hospital, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia.
Centre for Health Policy, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Victoria, Australia, Victoria, Melbourne, Australia.
BMC Glob Public Health. 2024 Oct 25;2(1):72. doi: 10.1186/s44263-024-00102-0.
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.
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.
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.
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.
在生物标志物、基因组和生物样本库研究中，全球原住民的代表性仍然不足。本研究的目的是确定在澳大利亚、奥特亚罗瓦/新西兰、加拿大和美国与原住民开展文化安全且符合伦理的生物标志物和基因组研究的核心要素。
采用系统检索策略进行范围综述，利用电子数据库MEDLINE、EMBASE、PsychINFO、CINAHL和全球卫生数据库。关键检索词包括涉及原住民的“生物标志物”和“基因组学”研究，以及尊重、主权、治理和现有政策的伦理和法律原则。对2000年至2023年8月1日发表的原始研究进行系统综述。以描述性方式确定并综合了文化安全且符合伦理的研究过程的要素。通过原住民视角，使用原住民和托雷斯海峡岛民质量评估工具评估纳入研究的质量。
从17项研究中确定了七个相互关联的研究要素，作为提高生物标志物和基因组研究文化安全性的核心过程。这些要素包括建立关系和社区参与、学习、研究协调、后勤、同意、样本和生物标本、生物样本库结构与保护以及政策。在与原住民建立和开展生物标志物及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。
本范围综述中确定的有助于生物标志物和基因组研究过程文化安全的要素被整合到一个理论框架中，以指导研究实践。原住民和社区需要进一步评估，以便调整和适应该框架以供当地使用，以促进研究过程的文化安全，并最大限度地减少原住民参与生物标志物和基因组研究的障碍。
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