Under-representation of ethnic minorities in genetics research and how to address it

 Lizzy Pswarai and Merian Adjei are two sixth form students who undertook a summer research placement at the Open University’s School of Mathematics and Statistics, as part of the Nuffield Research Placements programme.

The common theme of their research was the under-representation of ethnic minorities in genetics research, and various ways to address it. There is a substantial lack of representation of ethnic minorities in all kinds of genetic and biomedical research carried out in the UK and beyond. This means that such communities miss out on various advancements of modern research which are centred mostly on White ethnicities.

Merian wanted to understand the various reasons for the lack of representation through her research. She conducted surveys to understand the attitudes of a diverse group of respondents, mostly from but not limited to ethnic minorities. In this process she wanted to understand what are some factors that might be holding back their representation, what are some concerns that these groups have, and how future researchers can address these issues towards improving representation and making genetics research more diverse.

Lizzy looked at a particular implication of this under-representation – the resulting biases in various technologies, such as the Oximeter for measuring blood oxygen saturation, that arise because the people these technologies are designed and tested on are often not so diverse. This applies both to instruments and algorithms, such as facial recognition. In this project, she was looking at a specific instrument, one which measures skin colour, and looking at its deviations from photo-realistic measurements.

Lizzy and Merian discuss their first ever research experience in this video, including their experience of this placement scheme. Their projects were supervised by Kaustubh Adhikari, with co-supervision of PhD students Soumya Paria and Mahfuzur Rahman Khokan.