Why Are Ethnic Minorities Under-Represented in US Research Studies?

M ost economically developed nations are now multi-ethnic, and, given current demographic trends, there is reason to believe that societies will continue to become more ethnically and culturally diverse. For example, the 1991 and 2001 UK censuses, which both included a mandatory question on ethnic identity, revealed that the proportion of the UK population classifying themselves as belonging to a non-white minority ethnic group increased by 53% over this 10-year period, from 3 million to 4.6 million (or 7.9% of the UK population) [1]. We have more than two decades of research highlighting ethnic inequalities for a range of long-term disorders [2], such as asthma (Table 1), but despite the policy imperative to improve health outcomes for marginalised populations, there has, unfortunately, been little progress toward this end [3,4]. Perversely, data indicate that for some conditions these health inequalities may actually be increasing. Why this is the case is almost certainly dependent on an array of complex socioeconomic factors [5]. Hampering efforts to reverse these trends is the lack of long-term investment into researching the health needs of minority ethnic communities and, as is increasingly being shown, evidence of their systematic under-representation in research studies in general. This lack of investment and under-representation are concerning as it may reasonably be argued that greater resources and effort should be directed toward researching those sections of society that have the greatest capacity to benefi t from such research. A study in this month's PLoS Medicine by David Wendler and colleagues investigates one possible source of under-representation—the willingness of ethnic minorities to participate in health research [6]. Previous work has shown that reporting of the ethnic profi le of research participants in trials and other studies has been poor in both the US and the UK [7]. This poor reporting almost certainly refl ects an underlying under-representation of these communities in these studies [8–10]. What is notable, however, is that the blame for this under-representation has typically been placed fi rmly at the feet of the marginalised. It is argued, often without any strong supporting evidence, that the minority ethnic groups in question either fail to understand the importance of the research process or are unable to participate because of language barriers. According to this argument, even if minority groups can comprehend the nature of the research and are able to participate, they may distrust it to the extent that they decline to …