Booth Kade, Bryant Jamie, Collis Felicity, Chamberlain Catherine, Hughes Jaquelyne, Hobden Breanne, Griffiths Kalinda E, Wenitong Mark, O'Mara Peter, Brown Alex, Eades Sandra J, Kong Kelvin M, Lovett Raymond W, Kennedy Michelle
The University of Newcastle, Newcastle, NSW.
Hunter Medical Research Institute, Newcastle, NSW.
Med J Aust. 2025 Feb 3;222 Suppl 2:S16-S24. doi: 10.5694/mja2.52570.
To examine researchers' reports of adherence to ethical principles in their most recent research project, including factors associated with higher self-reported adherence, and perceptions of how research conduct could be improved.
Online cross-sectional survey.
SETTING, PARTICIPANTS: Researchers who had conducted any health or medical research that included Aboriginal and Torres Strait Islander people or their data.
Researchers rated their adherence to 15 ethical principles extracted from ethical guidelines in their most recent research project on a 5-point Likert scale (poor to excellent), and reported what they believe is needed to improve the conduct of Aboriginal and Torres Strait Islander health and medical research.
391 researchers completed the survey. Those with > 10 years' experience in the field were significantly more likely to self-report adhering to all 15 key ethical principles compared with those with ≤ 5 years' experience. Compared with those with ≤ 5 years' experience, those with 6-10 years' experience were significantly more likely to self-report adhering to: engaging community in identifying research priorities (odds ratio [OR], 2.05; [95% confidence interval (CI), 1.23-3.40]); engaging community in developing the research questions (OR, 2.16; 95% CI, 1.32-3.55); and engaging community in research implementation (OR, 2.10; 95% CI, 1.25-3.54). Aboriginal and Torres Strait Islander participants were significantly more likely to self-report adhering to the following principles than non-Indigenous participants: engaging community in identifying research priorities (OR, 1.90; 95% CI, 1.16-3.10); engaging community in developing the research questions (OR, 2.16; 95% CI, 1.30-3.61); engaging community in research implementation (OR, 1.92; 95% CI, 1.14-3.20); embedding Aboriginal governance, advisory and decision making on the project (OR, 2.10; 95% CI, 1.26-3.50); embedding opportunities in the research for capacity building for communities (OR, 1.70; 95% CI, 1.04-2.77); and enacting Indigenous data sovereignty and governance principles (OR, 1.67; 95% CI, 1.02-2.70). Open-ended responses indicated research conduct could be improved by recognition of community as experts, genuine partnerships and engagement, and pathways for Aboriginal and Torres Strait Islander researchers and support to strengthen the field.
Structural and individual change is required to accommodate community priority setting, governance, consultation, leadership and translation in the conduct of ethical Aboriginal and Torres Strait Islander health and medical research. Such changes should be flexible and responsive to calls made by Aboriginal and Torres Strait Islander researchers and communities.
调查研究人员在其最近的研究项目中遵守伦理原则的报告情况，包括与较高自我报告遵守率相关的因素，以及对如何改进研究行为的看法。
在线横断面调查。
设置、参与者：进行过任何涉及原住民和托雷斯海峡岛民或其数据的健康或医学研究的研究人员。
研究人员在5分李克特量表（从差到优）上对其在最近研究项目中遵守从伦理准则中提取的15条伦理原则的情况进行评分，并报告他们认为改进原住民和托雷斯海峡岛民健康与医学研究行为所需的措施。
391名研究人员完成了调查。与经验≤5年的研究人员相比，在该领域有超过10年经验的研究人员更有可能自我报告遵守所有15条关键伦理原则。与经验≤5年的研究人员相比，经验在6至10年的研究人员更有可能自我报告遵守以下原则：让社区参与确定研究重点（优势比[OR]，2.05；[95%置信区间（CI），1.23 - 3.40]）；让社区参与提出研究问题（OR，2.16；95%CI，1.32 - 3.55）；让社区参与研究实施（OR，2.10；95%CI，1.25 - 3.54）。与非原住民参与者相比，原住民和托雷斯海峡岛民参与者更有可能自我报告遵守以下原则：让社区参与确定研究重点（OR，1.90；95%CI，1.16 - 3.10）；让社区参与提出研究问题（OR，2.16；95%CI，1.30 - 3.61）；让社区参与研究实施（OR，1.92；95%CI，1.14 - 3.20）；在项目中纳入原住民治理、咨询和决策（OR，2.10；95%CI，1.26 - 3.50）；在研究中为社区能力建设提供机会（OR，1.70；95%CI，1.04 - 2.77）；以及制定原住民数据主权和治理原则（OR，1.67；95%CI，1.02 - 2.70）。开放式回答表明，通过将社区视为专家、建立真正的伙伴关系和参与，以及为原住民和托雷斯海峡岛民研究人员提供途径和支持以加强该领域，可以改进研究行为。
在进行符合伦理的原住民和托雷斯海峡岛民健康与医学研究时，需要进行结构和个体层面的变革，以适应社区的优先事项设定、治理、咨询、领导和转化。这些变革应具有灵活性，并响应原住民和托雷斯海峡岛民研究人员及社区的呼吁。
