The known: Research conducted with Aboriginal and Torres Strait Islander people must be conducted according to ethics guidelines.
The new: Most researchers have obtained multistate ethics approval and obtained ethics approval from an Aboriginal‐specific human research ethics committee, however many report not feeling confident in managing the ethics application process. While ethics approval was considered an important process that improves research and research practice, obtaining multiple ethics approvals was reported to be challenging.
The implications: Ethical oversight for Aboriginal and Torres Strait Islander health and medical research could be strengthened by streamlining approval processes, reducing time and cost barriers to obtaining approval, and enhancing cultural appropriateness of the application process.
The National statement on ethical conduct in human research outlines principles guiding safe and scientifically sound research practices.1 These principles ensure the protection of participants’ rights and safety while meeting organisational and legal requirements. Responsibility for upholding ethical research practices rests with various stakeholders, including researchers, supervisors, human research ethics committees (HRECs), institutions, funding bodies and governments. However, individual researchers and their institutions have primary responsibility for ensuring that their research adheres to ethical standards.1 The implementation of ethics guidelines is facilitated through registered HRECs that review, approve and monitor research in accordance with established principles.
Historically, research practices have caused significant harm to Aboriginal and Torres Strait Islander people through forced experimentation, exploitation, and disruption to cultural practices.2 Consequently, research conducted with Aboriginal and Torres Strait Islander people must meet additional ethical standards, including the need to be safe, respectful, responsible, of high quality, and directly beneficial to Aboriginal and Torres Strait Islander people.3,4,5,6 Despite the longstanding existence of these standards,7,8,9 there are continued concerns that research fails to adequately incorporate Aboriginal and Torres Strait Islander worldviews, uphold ethical principles and apply Aboriginal and Torres Strait Islander ethics guidelines appropriately.2,10,11,12 A recent study found inadequate levels of education on applying ethics guidelines and that Aboriginal and Torres Strait Islander people are often not involved in the oversight and conduct of research.13 Several case studies have highlighted the extensive ethics and governance processes involved in obtaining approval for the conduct of longitudinal studies and randomised controlled trials with Aboriginal and Torres Strait Islander participants.14,15,16 No national research has examined researcher practices for obtaining ethics approval for Aboriginal or Torres Strait Islander research broadly or obtained researchers’ reflections on ethics approval processes. Such reflexivity of research practice is essential for identifying improvements for ethics approval processes.
In this article, we examine the following among researchers who have conducted research with Aboriginal and Torres Strait Islander people or their data: their self‐reported practices for obtaining ethics approval for health and medical research involving Aboriginal and Torres Strait Islander people in Australia; factors associated with them having higher levels of confidence in managing the ethics application process; and their reflections on current ethics approval processes and how they could be improved.
Methods
Murru Minya is a multifaceted exploration of the experiences and perceptions of Aboriginal and Torres Strait Islander community members, researchers and human research ethics committee members about ethical research practices and processes for applying for and approving Aboriginal and Torres Strait Islander health and medical research. The data obtained from researchers are reported across multiple articles to allow a nuanced exploration of ethical research practices, distinct from ethics processes. The reporting of this study adhered to the CONSolIdated critERia for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement (Supporting Information).
Positionality
The concept of ethical practice is not new to Aboriginal and Torres Strait Islander peoples. Our ways of being incorporate praxis of ethics which connect to our relational worldview.17 We acknowledge that the ways in which this research is conducted is deeply rooted in our lived experience and relationality. Consequently, this intrinsically influences how Aboriginal and Torres Strait Islander people have engaged in the Murru Minya study. This work is conducted in line with Rigney's Indigenist methodology and aims “to delegitimate racist oppression in research and shift to a more empowering and self‐determining outcome”18 through an exploration of the ways in which research is conducted, as examined by a collective of Aboriginal and Torres Strait Islander researchers.
The study was conceptualised and led by MK (Wiradjuri woman), in partnership with other Aboriginal (FC, CC, KEG, MW, PO, AB, SJE, KK, RL) and Torres Strait Islander (JH) researchers, supported by non‐Indigenous researchers (JB, KB, BH) located across these ancestral lands and geographies. Researchers are situated in a range of settings including academic and research institutions, community‐controlled and clinical settings. As such, we understand the duality and complexity of upholding relational research practices within Euro‐Western structures.
This work is grounded in our standpoint which, as described by Nakata, “is a distinct form of analysis and is itself both a discursive construction and an intellectual device to persuade others and elevate what might not have been a focus of attention by others”.19 Through an exploration of the field of Aboriginal and Torres Strait Islander health and medical research, by Aboriginal and Torres Strait Islander researchers, this work re‐positions Euro‐Western standard practices of research20 whereby the predominately non‐Indigenous researchers are the subjects to Indigenous research as defined by us.
Study design and setting
A cross‐sectional survey targeting researchers conducting Aboriginal and Torres Strait Islander health and medical research was administered from 9 August 2022 to 31 May 2023.
Participant eligibility and recruitment
Researchers who published or were awarded funding for Aboriginal and/or Torres Strait Islander health or medical research in the previous 5 years were eligible to participate. Researchers were identified via a systematic review21 and review of grants funded by the National Health and Medical Research Council (NHMRC) and the Medical Research Future Fund in 2021, 2022 and up to March in 2023. The corresponding authors of publications were contacted using information included in their publications. Researchers awarded grants were contacted using publicly available information. All identified researchers were emailed a link to an online survey. The survey link was also promoted by the Lowitja Institute and the OCHRe (Our Collaborations in Health Research) network.
Data collection
Survey items were developed following a literature review,21 review of ethics guidelines,3,4,18 and review by the Aboriginal and Torres Strait Islander investigators. The protocol for the Murru Minya study is published elsewhere.23 The survey was piloted with a small number of researchers to ensure clarity and gather feedback on content and structure before it was finalised. Participants completed a 74‐item survey that was collected and managed using the REDCap (Research Electronic Data Capture) tool.24,25 Participants provided demographic information, and self‐reported their current role or position, location and place of employment, proportion of research time dedicated to Aboriginal and Torres Strait Islander research and time commitment to Aboriginal research over their career. Participants provided data relating to: the ethics guidelines they used to guide research; obtaining multistate ethics approvals; seeking approval from Aboriginal human research ethics committees (AHRECs); participation in ethics training specifically for Aboriginal and Torres Strait Islander research; consultation with Aboriginal and Torres Strait Islander communities; partnering with Aboriginal community‐controlled health organisations for their research; and level of confidence in managing ethics application processes. At the end of the survey, participants answered an open‐ended question: “Do you have any reflections on the ethics process?”
Data analysis
Quantitative data were analysed using SPSS 27.0 (IBM). Data are presented as counts and percentages for categorical variables. A multinominal logistic regression was conducted to explore factors associated with confidence in managing ethics approval processes. Participant confidence was re‐categorised to not at all confident, fairly confident, or very or extremely confident. The following variables were included in the regression: Indigenous identity; whether the participant had ever conducted Aboriginal and Torres Strait Islander research in a jurisdiction with an Aboriginal‐specific ethics committee (New South Wales, South Australia and Western Australia compared with other jurisdictions); number of years undertaking research in the area of Aboriginal and Torres Strait Islander health; current role; whether the participant had completed any form of ethics training specifically for Aboriginal and Torres Strait Islander research; whether the participant had ever obtained ethics approval from an AHREC; and whether the participant had ever obtained multistate ethics approvals. Bivariable multinomial logistic regression analyses first examined the influence of relevant independent variables on confidence in managing the ethics approval process. Variables with a P value of < 0.2 were further fitted into a multivariable multinomial logistic regression model, and adjusted odds ratios (aORs) and 95% confidence intervals (CIs) are presented. The reference category used was not at all to somewhat confident. The level of significance was set at 5%.
Qualitative data were organised and managed using NVivo version 12 (Lumivero). One of us (KB) undertook analysis using template analysis.26 After reviewing responses to the open‐ended questions, two a priori themes were developed: “benefits to the ethics process” and “challenges to the ethics process”. These were chosen as participants typically spoke to either the challenges or enablers of the process when asked for their reflections. This hybrid deductive–inductive approach allowed categorisation of the a priori themes to begin to make sense of the data and develop additional themes (see Supporting Information for more details on the qualitative analysis process).
Ethics approval
This research was developed and implemented following national consultation and collaboration with Aboriginal and Torres Strait Islander researchers, Aboriginal community‐controlled health organisation representatives and peak bodies, Aboriginal community members, and the National Indigenous Health Leadership Alliance. The research was conducted in line with key ethics guidelines and ethical principles.4,5,23,27,28 Ethics approval for this phase of the research was obtained from the Aboriginal Health and Medical Research Council of NSW Human Research Ethics Committee (1924/22), Australian Institute of Aboriginal and Torres Strait Islander Studies Research Ethics Committee (EO323‐20220414) and University of Newcastle Human Research Ethics Committee (H‐2022‐0211). All participants provided informed consent for participation.
Results
Eight‐hundred and two identified researchers were emailed the survey link. A total of 553 eligible researchers commenced the survey, of whom 439 (79.4%) answered all questions related to this article and were included in the analysis. Of those included, 84 (19.1%) were Aboriginal and/or Torres Strait Islander and 355 (80.9%) were not Aboriginal or Torres Strait Islander. Participants’ demographic characteristics are provided in Box 1.
Researcher self‐reported practices for obtaining ethics approval
Participant reports of their practices for obtaining ethics approvals are provided in Box 2. Three‐hundred and twenty‐seven participants (74.5%) had obtained ethics approval from an AHREC and 254 (57.9%) had obtained multistate ethics approvals. Most participants (364, 82.9%) reported that they usually consult with Aboriginal and Torres Strait Islander communities at the stage of idea generation and conception, and 107 participants (24.4%) reported that they always partner with Aboriginal community‐controlled health organisations to conduct research.
Factors associated with higher levels of confidence in obtaining ethics approval
A total of 122 participants (27.8%) reported that they were very or extremely confident in managing the ethics application process. In the multivariable analysis (Box 3), Aboriginal and Torres Strait Islander participants were significantly less likely to report being fairly confident than not at all to somewhat confident in managing the ethics application process compared with participants who were not Aboriginal or Torres Strait Islander (aOR, 0.48; 95% CI, 0.23–0.98). Participants with more than 10 years of experience were more than four times more likely to report being fairly confident than not at all to somewhat confident (aOR, 4.74; 95% CI, 2.46–9.14) and more than eight times more likely to report being very or extremely confident than not at all to somewhat confident (aOR, 8.24; 95% CI, 3.89–17.5) than those who had fewer than 6 years of experience. Participants with 6–10 years of experience were significantly more likely to report being fairly confident than not at all to somewhat confident (aOR, 2.69; 95% CI, 1.47–4.93) and very or extremely confident than not at all to somewhat confident (aOR, 2.91; 95% CI, 1.39–6.08) compared with those who had fewer than 6 years of experience. Engaging in Aboriginal and Torres Strait Islander research ethics training increased the likelihood of being very or extremely confident in managing the ethics application process (aOR, 1.87; 95% CI, 1.08–3.24). Participants who dedicated greater than 50% of their time to Aboriginal and Torres Strait Islander research were significantly more likely to be fairly confident than not at all to somewhat confident (aOR, 2.67; 95% CI, 1.54–4.63) and very or extremely confident than not at all to somewhat confident (aOR, 4.01; 95% CI, 2.17–7.41) in managing the ethics application process compared with those who dedicated 50% or less of their time to Aboriginal and Torres Strait Islander research. Participants who had obtained ethics approval from an AHREC in the past were significantly more likely to report being fairly confident (aOR, 1.85; 95% CI, 1.05–3.27) and very or extremely confident (aOR, 2.13; 95% CI, 1.10–4.13) in managing the ethics application process compared with those who had never obtained AHREC approval.
Researcher reflections on current ethics approval processes and how they could be improved
A total of 297 participants (67.7%) provided open‐text reflections on ethics processes for conducting Aboriginal and Torres Strait Islander research. Five main themes were developed (Supporting Information, table 1).
Theme 1: Ethics approval is considered an important process that improves research and research practice. Participants reported that obtaining ethics approval was an important process that improves research practice and outcomes. For some participants, the ethics process was used to guide their research conduct and was helpful in developing research design. Others reported that the ethics approval processes provided reassurance that their research was conducted accurately and appropriately, particularly when AHREC‐specific approvals were obtained. Those who reported positive perceptions of ethics felt that ethics approval processes were straightforward, and that the requirements of ethics committees were reasonable. Participants noted having good experiences with AHRECs, who were described as helpful and supportive.
Theme 2: Aboriginal and Torres Strait Islander collaborators (researchers, communities, AHRECs) play a central role in guiding the ethics process. Non‐Indigenous participants frequently attributed positive experiences in obtaining ethics approvals to having guidance from Aboriginal and Torres Strait Islander colleagues, community partners and AHRECs. Aboriginal and Torres Strait Islander staff and colleagues were often described as taking a lead role in guiding the ethics application process, including leading community consultation and approvals, and upholding relationships. Guidance and communication received from AHRECs enhanced the ethics application and approval process, particularly for non‐Indigenous researchers, and was considered to contribute to more ethical research practices.
Theme 3: The time and cost required to obtain ethics approval, and obtain multiple ethics approvals, is challenging. Many participants reflected on the amount of time and costs (particularly personnel costs) required to obtain ethics approvals. This was perceived to restrict researchers’ adherence to ethical standards such as consultation and other requirements due to funding and timeline issues. The time required to complete ethics applications was particularly apparent for national and cross‐jurisdictional studies given that different committees use different review processes, use different application forms, and require adherence to different ethics processes and ethical principles.
Theme 4: Current ethics guidelines, processes and committees are not always aligned to uphold Indigenous approaches or methodologies. Aboriginal and Torres Strait Islander researchers noted that mainstream HRECs and ethics processes were not always appropriate and prioritise Western systems and non‐Aboriginal researchers. Aboriginal and Torres Strait Islander researchers detailed their frustration with having to justify their own ethical research practice to non‐Aboriginal committee members. Aboriginal and Torres Strait Islander researchers also mentioned the difficulties associated with applying and explaining Indigenous methodologies in a system that privileges westernised knowledges and methodologies.
Theme 5: A standardised and streamlined approach would enhance the ethics approval process and ease some of the reported challenges. Participants suggested that a standardised or streamlined approach would ease some of the reported challenges, and make for a smoother, time‐efficient process. Some participants mentioned that having an AHREC in each jurisdiction would improve the ethics approval process and research outcomes. They noted that this would be particularly useful if there was one overarching or national Aboriginal‐specific ethics committee as this would provide consistency and reduce the number of separate applications required for a project.
Discussion
We report new knowledge about researcher practices for obtaining ethics approval for Aboriginal and Torres Strait Islander health and medical research. Researchers acknowledged the importance of ethical principles, HRECs and AHRECs in guiding ethical research design and practice and emphasised the critical role of Aboriginal and Torres Strait Islander people in facilitating ethical research practices. The central role of Aboriginal and Torres Strait Islander people in leading research is reflected in strategic frameworks for improving Aboriginal and Torres Strait Islander health,28 however these findings highlight the burden on the Aboriginal and Torres Strait Islander research workforce to ensure that research is conducted ethically.
In our study, AHRECs were identified as playing a key role in supporting researchers to navigate complex ethical considerations specific to the conduct of Aboriginal and Torres Strait Islander health research, ensuring Indigenous‐led oversight and governance of research practices. AHRECs were established to ensure that the rights of Aboriginal and Torres Strait Islander people are upheld in research and that research is of benefit to Aboriginal and Torres Strait Islander people. While these findings support recent perspectives that AHRECs are “best placed to ensure that research projects are positioned to be conducted in a culturally safe way that benefits Aboriginal and Torres Strait Islander people”,10 this is also likely adding additional burden to the limited AHREC resources available. It is also important to acknowledge that AHRECs are not operational in all jurisdictions. More than a decade ago it was recommended that AHRECs with a specific focus on Aboriginal and Torres Strait Islander health be set up and resourced in those jurisdictions where they do not yet exist.30 Despite this, no new state‐based AHRECs have been established in the past decade despite being a priority for community‐controlled peak bodies across several states.
Previous research has indicated inadequate levels of education among researchers in applying ethics guidelines and poor knowledge of historic components of Aboriginal and Torres Strait Islander health research and Indigenous governance and data sovereignty.13 These are barriers to the implementation of ethical principles and guidelines given the critical need for comprehensive understanding and respect for Indigenous perspectives, cultural protocols, and community engagement processes for appropriate research practice. Our research extends on these findings by demonstrating that most researchers conducting Aboriginal and Torres Strait Islander health and medical research have not participated in specific ethics training, despite formal training in ethical research practices being widely available within universities, at research institutes and through commercial providers for more than a decade. The highest levels of confidence were reported by researchers who were more experienced, who had dedicated more time to Aboriginal and Torres Strait Islander research and who had participated in ethics training. This highlights the need for targeted education and capacity‐building initiatives that foster cultural competence among researchers and ensure that the unique cultural values, protocols and worldviews of Aboriginal and Torres Strait Islander communities are reflected and upheld in research. The federal government National Aboriginal and Torres Strait Islander Health Workforce Strategic Framework and Implementation Plan 2021–2031 identified the need to “establish and implement national standards for cultural safety training in health, education, training and research sectors”.31 We support calls for the development of training for researchers in ethical research practice32 and emphasise the importance of Aboriginal and Torres Strait Islander researchers, communities, peak bodies and AHRECs in leading the development, implementation and evaluation of training.
Researcher reflections on ethics approval processes highlight the need to streamline and standardise approval process to reduce time and cost burdens, particularly for national and cross‐jurisdictional studies. These findings align with those of previous research, which identified the complexity of current ethics approval processes for multistate and national research.33,34 In accordance with the National statement on ethical conduct in human research,1 all Aboriginal and Torres Strait Islander research requires full ethics review and approval regardless of level of risk, and all national Aboriginal and Torres Strait Islander research requires approval from multiple ethics committees. It is essential that these complexities are addressed, particularly given that more than 60% of researchers in our study reported obtaining multijurisdictional approvals. Despite repeated calls,10,11,30 there is still no national Aboriginal‐specific ethics committee that can provide single review of multisite or cross‐jurisdictional research to streamline approval processes. Urgent investment in ethical governance has been called for11 and the University of Newcastle and Lowitja Institute have been successful in obtaining funding in partnership to establish a national Aboriginal and Torres Strait Islander HREC, which will centralise the ethics review process for Aboriginal and Torres Strait Islander health research.
Limitations
Firstly, given the recruitment methods used, we are unable to determine a participation rate for the study. Secondly, it is possible that self‐selection bias may have affected the representativeness of the study sample, resulting in the recruitment of researchers with more ethical research practices. Participants in this survey are therefore not reflective of all researchers who conduct Aboriginal and Torres Strait Islander health research.
Conclusions
Processes for obtaining ethics approval for Aboriginal and Torres Strait Islander health and medical research would be strengthened by streamlining ethics application processes, reducing time and cost barriers, and enhancing cultural appropriateness. We join calls for the establishment and appropriate resourcing of state‐based AHRECs in every jurisdiction, and the establishment of a national Aboriginal and Torres Strait Islander human research ethics committee to assess and approve cross‐jurisdictional research.
Box 1 – Participants’ demographic characteristics
|
Characteristic |
Aboriginal and/or Torres Strait Islander |
Not Aboriginal or Torres Strait Islander |
Total |
||||||||||||
|
|
|||||||||||||||
|
Participants |
84 |
355 |
439 |
||||||||||||
|
Age group |
|
|
|
||||||||||||
|
< 25 years |
3 (3.6%) |
1 (0.3%) |
4 (0.9%) |
||||||||||||
|
25–34 years |
20 (24%) |
33 (9.3%) |
53 (12.1%) |
||||||||||||
|
35–44 years |
23 (27%) |
88 (24.8%) |
111 (25.3%) |
||||||||||||
|
45–54 years |
18 (21%) |
111 (31.3%) |
129 (29.4%) |
||||||||||||
|
55–64 years |
15 (18%) |
81 (22.8%) |
96 (21.9%) |
||||||||||||
|
65–74 years |
5 (6.0%) |
32 (9.0%) |
37 (8.4%) |
||||||||||||
|
≥ 75 years |
0 |
9 (2.5%) |
9 (2.1%) |
||||||||||||
|
Gender* |
|
|
|
||||||||||||
|
Woman or female |
62 (74%) |
272 (76.6%) |
334 (76.1%) |
||||||||||||
|
Man or male |
22 (26%) |
79 (22.3%) |
101 (23.0%) |
||||||||||||
|
Non‐binary |
0 |
1 (0.3%) |
1 (0.2%) |
||||||||||||
|
Prefer not to say |
0 |
3 (0.8%) |
3 (0.7%) |
||||||||||||
|
Aboriginal and Torres Strait Islander identity |
|
|
|
||||||||||||
|
Aboriginal |
— |
— |
80 (18.2%) |
||||||||||||
|
Torres Strait Islander |
— |
— |
4 (0.9%) |
||||||||||||
|
Aboriginal and Torres Strait Islander |
— |
— |
0 |
||||||||||||
|
Other Indigenous population |
— |
— |
20 (4.6%) |
||||||||||||
|
Not Aboriginal or Torres Strait Islander |
— |
— |
335 (76.3%) |
||||||||||||
|
Current role or position |
|
|
|
||||||||||||
|
Current higher degree by research student (Master or PhD) |
19 (23%) |
33 (9.3%) |
52 (11.8%) |
||||||||||||
|
Early career researcher (≤ 5 years since PhD completion) |
16 (19%) |
66 (18.6%) |
82 (18.7%) |
||||||||||||
|
Mid‐career researcher (> 5 but < 10 years since PhD completion) |
7 (8.3%) |
61 (17.2%) |
68 (15.5%) |
||||||||||||
|
Senior career researcher (≥ 10 years since PhD completion) |
5 (6.0%) |
133 (37.5%) |
138 (31.4%) |
||||||||||||
|
Non‐academic role (eg, research assistant, project manager, research consultant) |
25 (30%) |
35 (9.9%) |
60 (13.7%) |
||||||||||||
|
Clinical position |
7 (8.3%) |
14 (3.9%) |
21 (4.8%) |
||||||||||||
|
Other |
5 (6.0%) |
13 (3.7%) |
18 (4.1%) |
||||||||||||
|
Primary place of employment for undertaking research† |
|
|
|
||||||||||||
|
University |
59 (70%) |
253 (71.3%) |
312 (71.1%) |
||||||||||||
|
Hospital |
7 (8.3%) |
41 (11.5%) |
48 (10.9%) |
||||||||||||
|
Research institute |
12 (14%) |
84 (23.7%) |
96 (21.9%) |
||||||||||||
|
Government agency |
9 (11%) |
18 (5.1%) |
27 (6.2%) |
||||||||||||
|
Aboriginal community‐based organisation |
13 (15%) |
25 (7.0%) |
38 (8.7%) |
||||||||||||
|
Mainstream primary care setting |
2 (2.4%) |
4 (1.1%) |
6 (1.4%) |
||||||||||||
|
Non‐government organisation |
8 (9.5%) |
10 (2.8%) |
18 (4.1%) |
||||||||||||
|
Private sector |
4 (4.8%) |
6 (1.7%) |
10 (2.3%) |
||||||||||||
|
Other |
1 (1.2%) |
2 (0.6%) |
3 (0.7%) |
||||||||||||
|
Location of primary place of employment |
|
|
|
||||||||||||
|
New South Wales |
25 (30%) |
101 (28.5%) |
126 (28.7%) |
||||||||||||
|
Victoria |
16 (19%) |
49 (13.8%) |
65 (14.8%) |
||||||||||||
|
Queensland |
18 (21%) |
80 (22.5%) |
98 (22.3%) |
||||||||||||
|
Northern Territory |
8 (9.5%) |
34 (9.6%) |
42 (9.6%) |
||||||||||||
|
Western Australia |
6 (7.1%) |
43 (12.1%) |
49 (11.2%) |
||||||||||||
|
South Australia |
6 (7.1%) |
29 (8.2%) |
35 (8.0%) |
||||||||||||
|
Tasmania |
1 (1.2%) |
1 (0.3%) |
2 (0.5%) |
||||||||||||
|
Australian Capital Territory |
4 (4.8%) |
13 (3.7%) |
17 (3.9%) |
||||||||||||
|
Outside of Australia |
0 |
5 (1.4%) |
5 (1.1%) |
||||||||||||
|
Number of years conducting Aboriginal and Torres Strait Islander research |
|
|
|
||||||||||||
|
≤ 5 years |
33 (39%) |
105 (29.6%) |
138 (31.4%) |
||||||||||||
|
6–10 years |
21 (25%) |
100 (28.2%) |
121 (27.6%) |
||||||||||||
|
> 10 years |
30 (36%) |
150 (42.3%) |
180 (41.0%) |
||||||||||||
|
Proportion of research time dedicated to Aboriginal and Torres Strait Islander research |
|
|
|
||||||||||||
|
≤ 25% |
6 (7.1%) |
146 (41.1%) |
152 (34.6%) |
||||||||||||
|
26–50% |
8 (9.5%) |
58 (16.3%) |
66 (15.0%) |
||||||||||||
|
51–75% |
11 (13%) |
44 (12.4%) |
55 (12.5%) |
||||||||||||
|
76–100% |
59 (70%) |
107 (30.1%) |
166 (37.8%) |
||||||||||||
|
Time commitment to Aboriginal research over career |
|
|
|
||||||||||||
|
Increased |
42 (50%) |
181 (51.0%) |
223 (50.8%) |
||||||||||||
|
About the same |
32 (38%) |
98 (27.6%) |
130 (29.6%) |
||||||||||||
|
Decreased |
8 (9.5%) |
65 (18.3%) |
73 (16.6%) |
||||||||||||
|
Other |
2 (2.4%) |
11 (3.1%) |
13 (3.0%) |
||||||||||||
|
Participated in ethics training specifically for Aboriginal and Torres Strait Islander research |
|
|
|
||||||||||||
|
Yes |
36 (43%) |
133 (37.5%) |
169 (38.5%) |
||||||||||||
|
No |
48 (57%) |
222 (62.5%) |
270 (61.5%) |
||||||||||||
|
|
|||||||||||||||
|
LGBTQ+ = lesbian, gay, bisexual, transgender, queer, and other non‐heteronormative or non‐binary sexual and gender identity. PhD = Doctor of Philosophy. * Participants were asked to describe their gender (not to be conflated with “sex”). Response options were: “woman or female”, “man or male”, “non‐binary”, “prefer not to say”, and “I use a different term” (with an open‐text field). Response options included gender and sex identifiers to allow inclusive participant preference in line with guidelines from leading LGBTQ+ health organisation ACON.25 † Participants could select more than one answer. |
|||||||||||||||
Box 2 – Research practices for obtaining ethics approval for Aboriginal health and medical research in Australia (439 respondents)
|
Characteristic |
Participants |
||||||||||||||
|
|
|||||||||||||||
|
Ethics guidelines used |
|
||||||||||||||
|
NHMRC Ethical conduct in research with Aboriginal and Torres Strait Islander peoples and communities |
405 (92.3%) |
||||||||||||||
|
AH&MRC NSW Aboriginal health ethics guidelines |
228 (51.9%) |
||||||||||||||
|
AIATSIS code of ethics for Aboriginal and Torres Strait Islander research |
218 (49.7%) |
||||||||||||||
|
Other |
67 (15.3%) |
||||||||||||||
|
Obtained multistate ethics approvals |
|
||||||||||||||
|
Never |
185 (42.1%) |
||||||||||||||
|
Sometimes |
149 (33.9%) |
||||||||||||||
|
Often |
70 (15.9%) |
||||||||||||||
|
Always |
35 (8.0%) |
||||||||||||||
|
Have sought approval from an Aboriginal‐specific ethics committee |
|
||||||||||||||
|
Yes |
327 (74.5%) |
||||||||||||||
|
No, but other community‐based committees |
53 (12.1%) |
||||||||||||||
|
No |
59 (13.4%) |
||||||||||||||
|
Usual stage at which Aboriginal and Torres Strait Islander communities are consulted |
|
||||||||||||||
|
Idea generation and conception |
364 (82.9%) |
||||||||||||||
|
During the funding application process |
33 (7.5%) |
||||||||||||||
|
Once funding has been allocated but before beginning the ethics application process |
21 (4.8%) |
||||||||||||||
|
During the ethics application process |
10 (2.3%) |
||||||||||||||
|
After receiving ethics approval |
3 (0.7%) |
||||||||||||||
|
I don't consult Aboriginal and Torres Strait Islander communities |
8 (1.8%) |
||||||||||||||
|
Frequency of partnering with Aboriginal community‐controlled health organisations for any research |
|
||||||||||||||
|
Never |
48 (10.9%) |
||||||||||||||
|
Sometimes |
140 (31.9%) |
||||||||||||||
|
Often |
144 (32.8%) |
||||||||||||||
|
Always |
107 (24.4%) |
||||||||||||||
|
Confidence in managing the ethics application process |
|
||||||||||||||
|
Not at all confident |
39 (8.9%) |
||||||||||||||
|
Somewhat confident |
122 (27.7%) |
||||||||||||||
|
Fairly confident |
156 (35.5%) |
||||||||||||||
|
Very confident |
102 (23.2%) |
||||||||||||||
|
Extremely confident |
20 (4.6%) |
||||||||||||||
|
|
|||||||||||||||
|
AH&MRC = Aboriginal Health and Medical Research Council of NSW; AIATSIS: Australian Institute of Aboriginal and Torres Strait Islander Studies; NHMRC = National Health and Medical Research Council. |
|||||||||||||||
Box 3 – Characteristics associated with particpants having confidence in managing the ethics application process (439 respondents)*
|
Category |
Crude odds ratio (95% CI) |
Adjusted odds ratio (95% CI) |
|||||||||||||
|
Fairly confident |
Very or extremely confident |
Fairly confident |
Very or extremely confident |
||||||||||||
|
|
|||||||||||||||
|
Aboriginal and/or Torres Strait Islander identity |
0.56 (0.30–1.03) |
1.32 (0.75–2.31) |
0.48 (0.23–0.98) |
1.31 (0.64–2.71) |
|||||||||||
|
Experience |
|
|
|
|
|||||||||||
|
> 10 years |
4.19 (2.40–7.31) |
8.63 (4.56–16.3) |
4.74 (2.46–9.14) |
8.24 (3.89–17.5) |
|||||||||||
|
6 to 10 years |
2.63 (1.50–4.64) |
2.98 (1.49–5.92) |
2.69 (1.47–4.93) |
2.91 (1.39–6.08) |
|||||||||||
|
≤ 5 years |
1 |
1 |
1 |
1 |
|||||||||||
|
Role |
|
|
|
|
|||||||||||
|
Higher degree by research student |
1 |
1 |
1 |
1 |
|||||||||||
|
Early career |
1.73 (0.78–3.84) |
1.87 (0.74–4.73) |
1.73 (0.72–4.16) |
2.10 (0.74–5.95) |
|||||||||||
|
Mid‐career |
2.20 (0.93–5.20) |
3.19 (1.22–8.32) |
1.72 (0.66–4.46) |
2.92 (0.96–8.90) |
|||||||||||
|
Senior career |
1.56 (0.75–3.28) |
2.50 (1.07–5.80) |
0.90 (0.36–2.23) |
1.73 (0.59–5.03) |
|||||||||||
|
Others |
1.01 (0.47–2.18) |
1.27 (0.52–3.10) |
0.80 (0.34–1.85) |
0.81 (0.30–2.20) |
|||||||||||
|
Completed any form of ethics training specifically for Aboriginal and Torres Strait Islander research |
1.36 (0.86–2.16) |
1.77 (1.09–2.89) |
1.38 (0.84–2.28) |
1.87 (1.08–3.24) |
|||||||||||
|
Time dedicated to Aboriginal and Torres Strait Islander health and medical research |
|
|
|
|
|||||||||||
|
≤ 50% of the time |
1 |
1 |
1 |
1 |
|||||||||||
|
> 50% of the time |
1.98 (1.27–3.11) |
3.17 (1.94–5.18) |
2.67 (1.54–4.63) |
4.01 (2.17–7.41) |
|||||||||||
|
Ever obtained approval from an Aboriginal human research ethics committee |
1.36 (0.86–2.16) |
1.77 (1.09–2.89) |
1.85 (1.05–3.27) |
2.13 (1.10–4.13) |
|||||||||||
|
Ever obtained multistate ethics approvals |
1.18 (0.76–1.84) |
1.87 (1.15–3.06) |
0.72 (0.42–1.22) |
0.94 (0.52–1.71) |
|||||||||||
|
|
|||||||||||||||
|
CI = confidence interval. * Reference: Not at all confident. Bold: statistically significant (confidence interval does not include 1). |
|||||||||||||||
Received 14 May 2024, accepted 23 October 2024
- Jamie Bryant1,2
- Kade Booth1,2
- Felicity Collis (Gomeroi)1,2
- Catherine Chamberlain (Palawa)3,4
- Jaquelyne Hughes (Wagadagam)5,6
- Breanne Hobden1,2
- Kalinda E Griffiths (Yawuru)5,7,8
- Mark Wenitong (Kabi Kabi)9
- Peter O'Mara (Wiradjuri)1
- Alex Brown (Yuin)10,11,12
- Sandra J Eades (Noongar)3
- Kelvin M Kong (Worimi)1,2
- Raymond W Lovett (Wongaibon Ngiyampaa)13,14
- Michelle Kennedy (Wiradjuri)1,2
- 1 University of Newcastle, Newcastle, NSW
- 2 Hunter Medical Research Institute, Newcastle, NSW
- 3 The University of Melbourne, Melbourne, VIC
- 4 Onemda, the University of Melbourne, Melbourne, VIC
- 5 Flinders University, Darwin, NT
- 6 Royal Darwin Hospital, Darwin, NT
- 7 Menzies School of Health Research, Darwin, NT
- 8 University of New South Wales, Sydney, NSW
- 9 The University of Queensland, Brisbane, QLD
- 10 The Kids Research Institute Australia, Adelaide, SA
- 11 South Australian Health and Medical Research Institute, Adelaide, SA
- 12 Australian National University, Canberra, ACT
- 13 Yardhura Walani National Centre for Aboriginal and Torres Strait Islander Wellbeing Research, Australian National University, Canberra, ACT
- 14 Australian Institute of Aboriginal and Torres Strait Islander Studies, Canberra, ACT
Data Sharing:
No data sharing is available from this study. The data underlying this article cannot be shared publicly due to ethics requirements and the privacy of individuals who participated in the study. Access to the data is only permitted to researchers named on the study as approved by the ethics committees that approved this study.
We acknowledge that this research is conducted across unceded lands of Aboriginal and Torres Strait Islander peoples and pay respect to the elders and caretakers of the lands, seas, sky and waterways. We acknowledge that Aboriginal and Torres Strait Islander peoples are the knowledge holders and pay respect to their wisdom and processes for knowledge productions and knowledge sharing. We acknowledge Maggie Walter for contributing to the establishment of the study and Romany McGuffog for assisting with survey design and project administration. We also wish to acknowledge the governing body for this project, the National Indigenous Health Leadership Alliance, and thank them for sharing their wisdom and expertise to ensure this research has tangible benefit and impact for our people.
This project is funded by an NHMRC Ideas Grant (APP2001767) led by the University of Newcastle. This research was supported by funding from the Hunter Medical Research Institute Equity in Health and Wellbeing Research Program. This research was also supported by an Australian Government Research Training Program scholarship. Breanne Hobden is supported by a Colin Dodds Australian Rotary Health Postdoctoral Fellowship (G1801108). Michelle Kennedy is funded by an NHMRC Early Career Fellowship (1158670). Alex Brown is supported by an NHMRC Senior Research Fellowship (GNT1137563). Jaquelyne Hughes is funded by an NHMRC Emerging Leader Fellowship (1174758). Kalinda Griffiths is funded under the UNSW Scientia Program. Catherine Chamberlain is funded by an NHMRC Leadership Fellowship (2025437). Funding organisations had no role in: designing and implementing the study; collecting, analysing and interpreting the data; or planning, writing and publishing this article.
No relevant disclosures.
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Abstract
Objectives: 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.
Study design: Cross‐sectional online survey.
Setting and participants: Australian‐based researchers who conducted research that included Aboriginal and Torres Strait Islander people or their data.
Main outcome measures: Results from a 74‐item online survey that participants completed, which included questions on demographics, ethics processes, perceptions of engagement in Aboriginal and Torres Strait Islander research, and barriers to and enablers of conducting Aboriginal and Torres Strait Islander research.
Results: Of 553 eligible researchers who commenced the survey, 439 (79.4%) answered all of the questions and were included in the analysis. A total of 327 participants (74.5%) had obtained ethics approval from an Aboriginal human research ethics committee (AHREC), 254 (57.9%) had obtained multistate ethics approvals and 270 (61.5%) had not participated in ethics training specifically for Aboriginal and Torres Strait Islander research. Participants were significantly more likely to report being very or extremely confident in managing the ethics application process if they had ≥ 6 years of research experience, had participated in training, had obtained ethics approval from an AHREC, or dedicated > 50% of their time to Aboriginal and Torres Strait Islander research. Participants acknowledged the importance of ethics approval processes in improving research practices, however they identified time and costs as barriers. Aboriginal and Torres Strait Islander participants identified that ethics processes do not always uphold Indigenous approaches or methodologies.
Conclusions: 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.