Dr Kade Booth

Objectives: To examine what ethics approvals are being sought for Aboriginal and Torres Strait Islander health and medical research, and to determine what proportion of this research upholds Aboriginal and Torres Strait Islander ethical governance via an Aboriginal and Torres Strait Islander community-controlled human research ethics committee (AHREC) by jurisdiction and funding body type. Study design: Scoping review of all original, peer-reviewed health and medical literature published over a 5-year period (January 2018 to December 2022). Data sources: Extending on a previous review, the search tool LIt.search was used to access all literature relating to Aboriginal and Torres Strait Islander health and medical research. Results: 589 eligible publications were included from the parent review, and a further 1703 publications were identified from the updated search. A total of 945 publications were included. A substantial number of ethics approvals were obtained from government-based ethics committees (394, 41.7%). More than half of the publications reported obtaining institutional ethics approval (514, 54.4%). Less than half (400, 42.3%) reported obtaining AHREC approval. Almost one-third of publications were on research that was conducted in states or territories where there is no AHREC (334, 35.3%). Publications did not always report obtaining AHREC approvals, including in jurisdictions where one operates. Conclusions: We found a concerning lack of Aboriginal and Torres Strait Islander ethical governance reported in health and medical research. Acknowledging that Aboriginal and Torres Strait Islander ethics guidelines and AHRECs were established due to harm caused to communities, these results suggest a high risk, with research not consistently being deemed safe, respectful and beneficial with appropriate AHREC ethics review and approval. We join calls for the establishment of AHRECs in all jurisdictions and nationally. Furthermore, we urge funding bodies and institutions to uphold requirements for Aboriginal and Torres Strait Islander ethical governance in research and funding agreements, as well as institutional policies and procedures.

Objective: To describe Aboriginal and Torres Strait Islander communities' processes, positioning and experiences of health and medical research and their recommendations. Design: A cross-sectional online and paper-based survey. Setting, participants: Representatives from Aboriginal and Torres Strait Islander health services and community-controlled organisations in Australia. Main outcome measures: Responses to a 33-item mixed methods survey that explored communities' positioning and processes relating to health and medical research and their experiences of health and medical research in the previous 5 years. Recommendations for improving health and medical research were elicited via two open-ended questions. Results: Fifty-one community representatives nationally responded to the survey. Most representatives reported feeling slightly or very positive about research (37, 73%). More than half (33, 65%) reported having formal governance processes, and two-thirds of those without governance processes were interested in establishing such processes (12, 67%). Almost half reported that research has sometimes or never had benefit (25, 49%). Ethical principles that were most often reported as essential included those relating to sharing results back with community (45, 88%), translating research into policy and practice (37, 73%), employing Aboriginal and Torres Strait Islander staff (37, 73%), Indigenous data sovereignty and governance (36, 71%) and research agreements (35, 69%). Community representatives reported being approached frequently and in the later stages of research, with little input during the development and design stages of research. Most representatives reported that their communities had participated in Indigenous-led research (39, 76%). Community representatives highlighted the need for appropriate resourcing and funding to drive and lead their own research agendas. Conclusion: Aboriginal and Torres Strait Islander communities continue to have negative experiences of research despite four decades of advocating for control, ownership and leadership of health and medical research. Researchers, funding bodies and institutions must examine current funding and research structures that reinforce current practices, to ensure transparency and accountability to communities by repositioning and giving power to communities to direct and lead their own health and medical research agendas.