In this blog Grace, our MSc placement student, discusses the causes of underrepresentation in mental health research and why it needs to be resolved.
Grace, MSc Student
THE PROBLEM
In the UK, the LGBT+ community face higher suicide rates (NHS England, 2020), black adults are 5 times more likely than white adults to be sectioned under the Mental Health Act 1983 (UK Government, 2023), and up to 23% of ethnic minorities will report a common mental disorder compared to 14% of whites (Commons Library Research Briefing, 2023), with this figure likely being underestimated as explained later. Yet these same marginalised groups, despite the disproportionate risk of mental illness, are often underrepresented in research. The UK Biobank is a large-scale biomedical database for research with over 500,000 UK participants (UK Biobank, 2023). However, the sample is currently estimated as 94.6% white, despite the UK population being 82% (Fry et al., 2017). Additionally, marginalised group experiences are underrepresented in research agendas. In 2010, only 0.1% of NIH funded research concerned LGBT health, with 79.1% of it focusing on HIV/AIDS (Coulter et al., 2014). This reinforces stereotypes and limits our understanding of how the unique experiences of marginalised groups contribute to mental illness. The lack of generalisability of research findings to these groups further widens disparities in access to effective intervention. These issues are even more problematic when small sample sizes force researchers to cluster minorities into homogenous groups. Broad demographic categories such as ‘LGBT+’ and ‘BAME’ overlook important variation within and between groups around cultural attitudes to mental health and experiences of prejudice (Kauh et al., 2021). For example, transgender individuals are more likely to report discrimination, depressive symptoms or suicide attempts than non-transgender LGBT+ individuals (Su et al., 2016). Therefore, clustering marginalised groups not only perpetuates misrepresentation but further disparages them, discouraging participation (Goyal et al., 2023).
THE CAUSES AND IMPLICATIONS
Discussion around representation of minority and marginalised groups in research has centred around the following three points:
1. Researcher homogeneity
Minority groups are underrepresented in academia due to systemic barriers that prevent access to higher education and reduce social mobility. Black women are 71% less likely to receive research grants than white men (Nguyen et al., 2023). Moreover, they are less likely to work in academia. Despite the increasing diversity of student populations, between 2016-2019, only 1.2% of the 19,686 PhD studentships from UKRI research councils were awarded to black or black mixed students (Arday, 2021). Although acceptance of LGBT individuals appears higher, 42% hide or disguise the fact that they are LGBT due to fears of discrimination (Stonewall, 2018). Therefore, researchers are disproportionately white, heterosexual and/or cisgender. These issues are particularly problematic because the vast majority of research is undertaken in Western, Educated, Industrialised, Rich, and Democratic (W.E.I.R.D.) countries, which are often demographically white-majority, compared to non-WEIRD countries. Consequently, researchers are less aware of the experiences of marginalised groups (King, 2019) and design studies in a format that is less relevant and accessible to them (Goyal et al., 2023). This results in research which only reflects the needs of those who are also white, heterosexual and/or cisgender. Furthermore, as research questions are so often inspired by one’s own experiences, this leaves little room for representative research questions when the collective experiences of the researchers are so homogenous. Therefore, a lack of representation in research design biases against the inclusion of marginalised groups in research from the outset.
2. Systematic exclusion
Non-probability sampling methods are employed by many large-scale studies. It’s a form of non-random sampling that relies on individuals who voluntarily engage in research and self-identify as experiencing mental health difficulties. However, cultural stigma around mental health diagnoses leaves many reluctant to make these disclosures due to fear of ostracism. Furthermore, this is exacerbated by the impact of years of systematic oppression. In the U.S., rising anti-LGBT+ legislation is restricting access to medical support (Human Rights Campaign, 2023). In addition, the impact of anti-black structures reminiscent of the pre-civil rights era, such as redlining, continue to endure today (Egede et al., 2023). Redlining is a historically exclusionary practice used by banks, healthcare services and other industries to classify neighbourhoods as unworthy of investment due to their racial makeup. To this day, the same neighbourhoods redlined in the 1930s, exhibit the greatest educational disparities with white neighbourhoods, and poorer physical and mental health outcomes (Lynch et al., 2021). Similarly, the poorest UK neighbourhoods (which are often overrepresented by immigrants or working-class people) have fewer resources, less funding, and a lack of cultural sensitivity to meet healthcare needs (Case & Kraftman, 2022). Consequently, rates of diagnosis in these groups are likely underestimated, and they are also less likely to receive treatment as a result. Therefore, non-probability sampling methods contribute to underrepresentation of minority groups in research. Yet, even when minority individuals are successfully recruited into research, they may be systematically excluded from analyses. In many GWAS studies, data from ethnic minority participants is excluded due to statistical and computational challenges in analysing data from multiple ancestries (Peterson et al., 2019). While it’s widely acknowledged as a limitation by current researchers, too few of us are attempting to overcome this problem.
3. Mistrust
There is a historically racist and homophobic stance that is pervasive amongst medical and research institutions (Pachankis et al., 2021). For centuries, psychiatric research has been used to oppress marginalised communities (Scholz et al., 2021). The founders of behavioural genetics used their research to promote eugenics and justify white supremacist ideologies which would later inspire the Nazi regimes. Homosexuality was pathologized by medical research and only declassified as a mental disorder in 1973. Yet, remnants of this are still observable in the ongoing legal use of conversion therapies (even in the UK). Finally, the infamous Tuskegee Syphilis study in 1932 exploited a group of vulnerable black men for 40 years and violated ethical standards. For many, these practices were swiftly forgotten under the veil of privilege. However, for impacted communities, the weaponization of research has transmitted fear through generations and eroded trust with researchers, discouraging participation. Moreover, due to researcher homogeneity, there are few researchers with the cultural awareness to understand and validate these concerns (Pachankis et al., 2021), consequently resulting in a reluctance to engage with services or be associated with related research.
In summary, marginalised groups are underrepresented in research due to systemic forces driving researcher homogeneity, systematic exclusion, and the intergenerational transmission of fears of researchers. These issues are endemic within the research community and urgently need to be resolved to produce representative research. But how can this be achieved? In our next blog, Grace will review the potential solutions to overcome these problems.
References
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Case, A., & Kraftman, L. (2022). Health inequalities. Health Inequalities.
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