The Medical journal of Australia
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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. ⋯ 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.
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To describe Aboriginal and Torres Strait Islander communities' processes, positioning and experiences of health and medical research and their recommendations. ⋯ 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.
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To examine self-reported practices for obtaining ethics approval and reflections on ethics application processes among researchers who have conducted Aboriginal and Torres Strait Islander health and medical research. ⋯ Processes for obtaining ethics approval for Aboriginal and Torres Strait Islander health and medical research do not meet contemporary research needs and would be strengthened by streamlining ethics application processes, reducing time and cost barriers, and enhancing cultural appropriateness. We join calls for the establishment of state-based AHRECs in every jurisdiction, and a national Aboriginal and Torres Strait Islander human research ethics committee to review cross-jurisdictional research.
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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. ⋯ 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.
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Describe perceptions of how well researchers conducting Aboriginal and Torres Strait Islander health and medical research apply ethical research practices. ⋯ Researchers are not consistently implementing all ethical practices outlined in guidelines for research involving Aboriginal and Torres Strait Islander people. We call for commitment from researchers, institutions and funding bodies to address shortfalls, embed processes, and hold researchers accountable to Aboriginal and Torres Strait Islander people, communities and the principles and guidelines they have established.