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Cited by 447Ethics in Clinical ResearchRace, Genetics, and SocietyCultural Competency in Health Care

Why ethnic minority groups are under-represented in clinical trials: A review of the literature

Hussain-Gambles, Mahvash, Atkin, Karl, Leese, Brenda·2004·Health and Social Care in the Community
DOI 10.1111/j.1365-2524.2004.00507.x
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Abstract

Randomised controlled trials (RCTs) are considered to be the gold standard in evaluating medical interventions; however, people from ethnic minorities are frequently under-represented in such studies. The present paper addresses a previously neglected debate about the tensions which inform clinical trial participation amongst people from ethnic minorities, in particular, South Asians, the largest ethnic minority group in the UK. In a narrative review of the available literature, based mainly on US studies, the present authors aim to make sense of the issues around under-representation by providing a theoretical reconciliation. In addition, they identify a number of potential barriers to ethnic minority participation in clinical trials. In so doing, the authors recognise that the recent history of eugenic racism, and more general views on clinical trials as a form of experimentation, means that clinical trial participation among people from ethnic minorities becomes more problematic. Lack of participation and the importance of representational sampling are also considered, and the authors argue that health professionals need to be better informed about the issues. The paper concludes by offering a number of strategies for improving ethnic minority accrual rates in clinical trials, together with priorities for future research.

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  • Traditional non-participatory research designs (e.g., RCTs) typically do not involve significant community outreach efforts to engage participants who have been historically excluded from intervention studies.

    “traditional non-participatory research designs (e.g., RCTs) typically do not involve significant community outreach efforts to engage participants who have been historically excluded from intervention studies [48].”

    From Centering Diverse Communities within Mindful Parenting Interventions in the U.S.: A Narrative Literature Review (2024) · cites this paper as [48]

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Authors
Hussain-Gambles, M., Atkin, K., & Leese, B.
Affiliations
University of Leeds (GB)
ORCID
Atkin, Karl
Venue
Health and Social Care in the Community
Publisher
Wiley
Published
2004-09
Volume
12
Issue
5
Pages
382-388
ISSN
  • 0966-0410 (ISSN-L)
  • 1365-2524
DOI
10.1111/j.1365-2524.2004.00507.x
OpenAlex
W2067982833
Cited by
447
References
38
Citations by year
2026: 20 · 2025: 31 · 2024: 37 · 2023: 29 · 2022: 38 · 2021: 41 · 2020: 21 · 2019: 22 · 2018: 25 · 2017: 24 · 2016: 25 · 2015: 21 · 2014: 23 · 2013: 8 · 2012: 14
FWCI
1.34
Type
journal article
Language
en
Open access
closed
Licence
doi.wiley.com/10.1002/tdm_license_1.1 (tdm, 4017 d)
Locations
  • Health & Social Care in the Community (publishedVersion)
  • PubMed (publishedVersion)
  • DigitalGeorgetown (Georgetown University Library) (submittedVersion)
Funders
University of Leeds
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
  • Social Sciences › Sociology and Political Science › Cultural Competency in Health Care
Keywords
underrepresentation in clinical trials, South Asians, barriers to clinical trial participation, clinical trial ethics, health professionals' awareness, research participation disparities
MeSH terms
Communication Barriers, Cultural Characteristics, Humans, Human Experimentation, Minority Groups, Reproducibility of Results, Randomized Controlled Trials as Topic, Patient Selection

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