There is growing evidence for population variation in susceptibility to disease and drug responses1,2. Therefore, widespread underrepresentation of ethnic minorities in UK biomedical and clinical research is surprising3,4. A recent Health Technology Assessment has found that flagship government and NHS (National Health Service) policy principles of equality and diversity are not formally promoted, despite concluding that estimates of efficacy and validity will be severely compromised if drugs are not tested on different socio-demographic groups3. With growing evidence of ethnic health inequalities5 it is imperative to understand and tackle the root causes. Apart from the ethical and social arguments, there are clear rational scientific, clinical, health and economic reasons to include different populations in research.
So why are minorities still underrepresented? Among the likely reasons is the lack of specific UK legislative or policy context. By contrast, the US Clinical Trials Fairness Act requires the inclusion of women and minorities in all state-funded research. The representation of both groups has increased since its introduction.
There are also the perceived problems of recruitment from minority ethnic communities who are generally considered 'hard-to-reach' and unwilling participants in clinical and biomedical research. However, recent evidence indicates that exclusion is the most probable cause of underrepresentation6. Additionally, critics argue that the associated costs of fairer inclusion make such research prohibitively expensive. Although these must be considered, cost– benefit analyses should equally factor in the significant losses that are likely to be incurred through the development, delivery and uptake of ineffective, if not adverse, treatments and interventions. Minorities now constitute almost one-tenth of the UK population.
Widening minority ethnic group access to, and representation across, UK biomedical and clinical research will clearly, therefore, depend on a number of interdependent factors and processes. At the least it will require the development and delivery of a clear policy framework and its guidance, coupled with increased or better targeted resources. More accessible culturally and linguistically competent recruitment programmes are also needed. Establishing greater clarity about equality and diversity issues1 will be key to these developments. Among the most pressing issues is a need to: consistently and usefully define the UK's different populations and subpopulations; identify the contexts in which ethno- or population-specific data is actually important; and ascertain the relative sample sizes necessary to draw meaningful conclusions. The genetics community can play a significant part, and could therefore take a more active role in bringing about a change in policy and practice.
Increasing minority ethnic group representation is, however, only part of the battle. Such improvements will be of merit only if there is appropriate analysis and publication of the research findings. This is of more general concern as there is a wealth of unpublished information. But, if all requirements are met, the UK could be on course to fulfilling its commitment towards reducing health inequalities, and giving its disadvantaged populations a fairer deal.
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Mehta, P. Promoting equality and diversity in UK biomedical and clinical research. Nat Rev Genet 7, 668 (2006). https://doi.org/10.1038/nrg1946
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DOI: https://doi.org/10.1038/nrg1946