Human research ethics committee processes and practices for approving Aboriginal and Torres Strait Islander health research: a mixed methods study

Abstract

Objectives: To describe human research ethics committee (HREC) members’ reports of: HREC membership structures; HREC processes for reviewing Aboriginal and Torres Strait Islander health and medical research; and experiences and perceptions of review operations. Study design: Cross-sectional 36-item survey and qualitative interviews with a subsample of survey participants. Setting, participants: Current and past members (preceding five years) of HRECs who assessed Aboriginal and Torres Strait Islander research. Main outcomes: Survey and interview results related to HREC structures, processes and functioning; challenges in review processes; and what is needed to improve ethical governance. Results: 229 HREC members completed the survey and 13 were interviewed. Half the participants (115 of 221, 52%) reported having an Aboriginal and Torres Strait Islander representative position. Key issues identified related to assessment processes and resourcing, including burden on Aboriginal and Torres Strait Islander members, ability for Aboriginal and Torres Strait Islander HRECs to manage additional applications, lack of clarity around specific assessment criteria for general population studies, lack of cohesion across the application or complaints processes, and lack of resourcing and infrastructure to monitor ethical practice after approval. Conclusion: Aboriginal and Torres Strait Islander people carry an important role and burden in the review of applications and monitoring of health research. However, Aboriginal and Torres Strait Islander people are not presently involved in all aspects of ethical research governance within current HREC structures, including the review and monitoring of approved research. Standardised processes and guidelines that uphold Aboriginal and Torres Strait Islander rights and expert knowledges are required.