New research published today in Human Genetics and Genomics Advances reveals the difference between ‘what we say’ and ‘what people hear’ when engaging underrepresented communities around genomics and healthcare.
Genomics datasets, which underpin the ability to interpret all genetic tests, are known to consist of DNA from predominately white, Northern European populations. As genomics becomes an increasingly important part of everyday healthcare, barriers to diverse participation must be overcome so that everyone can benefit from genomic medicine, not just the privileged few.
The groups were mixed in age and genders, and had limited familiarity with genomics. The individuals self-identified as belonging to communities with Black African, Black Caribbean and Pakistani ancestries, as well as people of various ancestral heritage who come from disadvantaged socio-economic backgrounds – all groups identified as missing from genomic datasets.
Other reasons behind participants’ scepticism around the benefits of genomics included lack of trust in those who should deliver these benefits, including private companies and governments, scientists and the NHS. Others believed these positive phrases were over-promising and perceived as disingenuous, due to the limitations of current genomics knowledge and lengthy clinical trials.
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