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

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.

Empirical data about women's attitudes toward a biobank focused on pregnancy outcomes

“…First, they demonstrate that there is widespread support for a pregnancy-focused genetic biobank in a mainly minority patient population. This may be surprising given the frequent finding of low research participation in minority populations [Hussain-Gambles et al, 2004;Murthy et al, 2004]. However, other data show that when properly informed about the risks and benefits of research, minorities are willing to enroll in research [McQuillan et al, 2003;Calderon et al, 2006;Di Bari et al, 2007].…”

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“…Exclusion of ethnic minorities from clinical trials undermines the UK Government's NHS plan for tackling inequalities and its core principle of providing culturally appropriate and accessible care for different groups and individuals. 157,158 We achieved a recruitment of 20% of our participants from an ethnic minority group.…”

Demographic data in asthma clinical trials: A systematic review with implications for generalizing trial findings and tackling health disparities

“…Researchers may also be discouraged from including minority populations by issues of ethics, language difficulties, unclear classification and definition of minority groups, health provider attitudes, religious standards and cultural modesty (Hussain-Gambles et al, 2004;Sheikh et al, 2004), as well as by institutional racism, other political sensitivities (Aldhous, 2002;Witzig, 1996), and arguments that race/ethnicity should not be included in studies unless there is a biological, scientific, or sociological reason for doing so (Rivara & Finberg, 2001). …”