ArticleInternational journal for equity in health2016
"We're checking them out": Indigenous and non-Indigenous research participants' accounts of deciding to be involved in research.
Article in International journal for equity in health, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
34 citing papers in PubMed, 2 syntheses or guidelines pooled it, 94 citations in OpenAlex.
- Systematic review of Indigenous involvement and content in mental health interventions and their effectiveness for Indigenous populations.The Australian and New Zealand journal of psychiatry · 2022Pooled it
- Potential research ethics violations against an indigenous tribe in Ecuador: a mixed methods approach.BMC medical ethics · 2020Pooled it
- Strategies to Support Sustained Participant Engagement in an Oral Health Promotion Study for Indigenous Children and Their Families in Australia.International journal of environmental research and public health · 2022Trial
- What does monkey malaria mean to you? A participatory photovoice study in rural Malaysian Borneo.Malaria journal · 2026Article
- Confusion, communication, and consent: ELSI barriers to genomics-enhanced remediation in Alberta's oil sands.Frontiers in genetics · 2026Article
- Clinical Trial Ethical Challenges in Low- and Middle-Income Countries: A Review of Systematic Review.Research square · 2025Article
- Article
- A Tribal data repository to advance Indigenous health and sovereignty.Nature genetics · 2025Article
- The impact of genetics and the environment on cancer risk in Indigenous Australians: a narrative review.The Lancet regional health. Western Pacific · 2025Review
- Migrants Living in the United Kingdom and Their Perceptions of Participation in Health Research: A Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Accepting the Legitimacy of Difference: Tools to Support the Decolonisation of Human Research Ethics in Western Health Research.Nursing open · 2025Review
- Underrepresented populations in genomic research: a qualitative study of researchers' perspectives.BMC medical genomics · 2025Article
- Article
- Protocol for a Qualitative Study Exploring Perspectives of Native Hawaiian Elders to Improve Health Outcomes.Progress in community health partnerships : research, education, and action · 2025Article
- Participatory systems modelling to inform improvements in the social and emotional wellbeing of young Aboriginal and Torres Strait Islander people in Australia.The Lancet regional health. Western Pacific · 2024Article
- Native Hawaiian and Pacific Islanders' Identity and Housing Status: The Impact on Historical Trauma and Perceived Stress.International journal of environmental research and public health · 2024Article
- Ten "simple" rules for non-Indigenous researchers engaging Indigenous communities in Arctic research.PLoS computational biology · 2024Article
- The Inclusion of Underrepresented Populations in Cardiovascular Genetics and Epidemiology.Journal of cardiovascular development and disease · 2024Review
- A Comparison of an Australian Observational Longitudinal Alzheimer's Disease Cohort to Community-Based Australian Data.Journal of Alzheimer's disease : JAD · 2024Observational
- "Sorry for laughing, but it's scary": humor and silence in discussions of Colorectal Cancer with Urban American Indians.BMC cancer · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIt is important for researchers to understand the motivations and decision-making processes of participants who take part in their research. This enables robust informed consent and promotes research that meets the needs and expectations of the community. It is particularly vital when working with Indigenous communities, where there is a history of exploitative research practices. In this paper, we examine the accounts of Australian Indigenous and non-Indigenous research participants in terms of how and why they agree to take part in research.
methodsA qualitative research approach was employed to undertake individual interviews with 36 research participants in Victoria, Australia. Eight participants identified as Indigenous and 28 were non-Indigenous. Thematic analysis was used to interpret the data.
resultsThere were stark differences between Indigenous and non-Indigenous research participants in terms of why and how they decided to participate in research. For Indigenous participants, taking part in research was primarily to benefit their communities rather than for personal interests. Indigenous participants often started from a position of caution, and showed a considered and deliberate process of decision making. In weighing up their decision to participate, some Indigenous participants clearly articulated what was valued in conducting research with Indigenous communities, for example, honesty, reciprocity, and respect; these values were explicitly used to assist their decision whether or not to participate. This was in contrast to non-Indigenous participants who took researchers' claims on face value, and for whom deciding to participate in research was relatively straightforward. The motivations to participate of non-Indigenous participants were due to personal interests, a desire to help others, or trust in the medical practitioner who recruited them for the research project.
conclusionUnderstanding research participants' motivations about taking part in research is important. This is particularly relevant for Indigenous communities where there is a reported history of research abuse leading to mistrust. This understanding can lead to research practice that is more respectful and responsive to the needs of Indigenous communities and abides by the values of Indigenous communities. Moreover it can lead to more ethical and respectful research practice for all.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.