The review involved an examination of 70 policy and guidance documents, spanning the period between 2017 and 2022 – of these, only 50 included broad and limited ethnicity information linked to precision medicine and/or genomics. Genetic research is used to analyse, prevent and predict illness and disease. However, the researchers conclude there is poor ethnic representation in datasets and as a result, this limits analysis of how well genetic testing and personalised medicine is working across different ethnic groups.
Well-documented historical abuses of Black and ethnic minority people by medical institutions have contributed to a loss in trust in research and clinical trial participation and in interventions such as vaccine uptake. Focus groups conducted by the University of Nottingham found potential volunteers less likely to participate due to worries that their genetic samples may be misused.
Some generally shunned participating in research due to historic research violations against ethnic minorities, others failed to understand how or why their participation in genetic research could benefit their families, communities and others.
Key findings, recommendations and the barriers, include those around language, training, translation and cultural and religious sensitivity.
Visit NHS Race and Health Observatory to read this report Return to the Insight Bank