Researchers' self-reported adherence to ethical principles in Aboriginal and Torres Strait Islander health and medical research and views on improving conduct: a mixed methods study.

OBJECTIVES

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.

STUDY DESIGN

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.

MAIN OUTCOME MEASURES

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.

RESULTS

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.

CONCLUSION

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.