Evidence map›Paper›PMID 26772174›Full record

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.

Marilys Guillemin, Lynn Gillam, Emma Barnard, Paul Stewart, Hannah Walker, Doreen Rosenthal

Open access · goldAbstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
34citing papers in PubMed, 2 pooled it
6.0field-weighted citation impact, top 4% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

34 citing papers in PubMed, 2 syntheses or guidelines pooled it, 94 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Review
  10. 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 · 2025
    Article
  11. Review
  12. Article
  13. Article
  14. Protocol for a Qualitative Study Exploring Perspectives of Native Hawaiian Elders to Improve Health Outcomes.Progress in community health partnerships : research, education, and action · 2025
    Article
  15. Article
  16. Article
  17. Article
  18. Review
  19. Observational
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 1 institution in 1 country.

Marilys GuilleminCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie Street, VIC, 3010, Melbourne, Australia. m.guillemin@unimelb.edu.au.
Lynn GillamCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie Street, VIC, 3010, Melbourne, Australia. l.gillam@unimelb.edu.au.
Emma BarnardCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie Street, VIC, 3010, Melbourne, Australia. ebarnard@unimelb.edu.au.
Paul StewartCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie Street, VIC, 3010, Melbourne, Australia. paul.stewart@cricket.com.au.
Hannah WalkerCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie Street, VIC, 3010, Melbourne, Australia. hannah_walker@hotmail.com.
Doreen RosenthalCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie Street, VIC, 3010, Melbourne, Australia. d.rosenthal@unimelb.edu.au.
The University of Melbourne · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Decision MakingAustralian Aboriginal and Torres Strait Islander PeoplesHumansInformed ConsentPatient ParticipationPopulation GroupsQualitative ResearchResearch SubjectsVictoria

Identifiers

PMID26772174
PMCPMC4715344
OpenAlexW2246512473

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.