Diversity and inclusion in research: beyond the researcher

When we talk about diversity and inclusion in science research, the focus tends to fall on who are the researchers and scientists, but the unintended consequences of poorly designed studies and trials can be life-threatening. Biomedical, medical and health research needs to represent the diversity of the population to be truly beneficial for everyone. 

It’s well known that a multitude of factors can impact the metabolism and response to medications including physiology and genetics. Therefore, if we are basing our prescribing and expected patient outcomes on the research available it is imperative that the research is representative of the whole population, or nuanced enough to understand where differences lie. Currently we are not there, and yet we are rapidly moving towards personalised medicine and genomics becoming integrated into the NHS. The question therefore remains, will this be available, effective and accessible to all or will we leave some groups behind as we advance medicine and healthcare? 

Recently, the book ‘Invisible Women’ by Caroline Criado Perez has popularised what some researchers have been concerned about for many years: science and health research has a sex and gender bias towards males and men as the models used in research. Pair this with physical sex differences, such as those in the sensory nerves involved in neuropathic pain, and you can see why there is an increasing call to diversify who is included in research, clinical trials and how we design basic biomedical research. The social aspects of gender also come into play, especially when considering how women are prescribed and treated for pain. 

Gender and sex are just the tip of an iceberg slowly being revealed. Currently in Europe there is no mandate to report the ethnicity of any patients enrolled in clinical trials. Ethnicity itself is not a perfect way of inferring genetic ancestry and the two continue to diverge. However, until we can afford to spend the time and money collecting full genomes from all individuals involved in research, it can be used to move towards the direction of personalised genomic medicine. In 2015-16, the FDA reported that 78.6% of global clinical trials participants were racially classified as ‘white’, despite this group not being the global majority. Therefore, the underrepresentation of other ethnicities in clinical trials leads us to question whether everyone would benefit from the results. It may be that in many instances there are no discernible differences in drug responses based on genetic background and variation, but if we aren’t interrogating this question in the first place how will we know and how many instances where this is important will we miss? In addition, better inclusion in biomedical and health research may help shine a light on other social and cultural factors influencing health inequalities that can be addressed through culturally-competent healthcare interventions with far greater impacts than ‘slightly’ personalised medication.  

When we look deeper into health research conducted, we can see a greater equalities issue emerging for many other groups, including those protected by law through the Equalities Act 2010. People with disabilities are largely absent from research not directly linked to their disability, whether through study exclusion criteria (often unjustified), inaccessible study documents, or research methods and measures. However, it is those with disabilities that experience poorer health outcomes, are more likely to have chronic health conditions and have a far higher expenditure on healthcare. Understanding how different health conditions and comorbidities interact with health interventions and drugs would benefit these patients, but with exclusion criteria specifically targeting these aspects, they are rarely able to make it through the first stage of screening. The addition of other aspects of health to a study may complicate the results and analysis, but with the current power of AI and machine learning we may be able to unravel these complexities after all.  

Challenging health inequalities underpins The Equality, Diversity and Inclusion in Science (EDIS) and Health Symposium for 2019EDIS is a coalition of 14 organisations in the science and health sector, including the British Pharmacological Society, working together to improve equality, diversity and inclusion. This year’s focus is on research content, with the symposium bringing together researchers and leaders in their fields with the aim to change the way we design and conduct our research. Inclusive research and experimental design is crucial for health equity, and systematically leaving any group behind in health advances is both poor practice and unethical.  

The symposium (held on September 9th at The Francis Crick Institute, London) will explore several topics including sex as a biological variable, ethnicity and ancestry in genomics studies, diversity in clinical trials, the impact of diversity on the power of AI in health research, and Black, Asian and Minority Ethnic (BAME) participation in health research. The event will inform, inspire and give researchers, funders and policy makers a chance to input on the future of how we acknowledge this problem and how we change it as a sector. We hope you can join us. 


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Published: 14 Aug 2019

About the author

Lilian Hunt

Lilian is the Programme lead for the Equality, Diversity and Inclusion in Science and Health (EDIS) coalition. Lilian received her PhD in Genetics from UCL whilst at The Francis Crick Institute. It was here that she helped bring together Wellcome, the Francis Crick Institute and GSK as founders of EDIS and has developed and led the coalition to its recent expansion. 

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