Black, Asian and ethnic minority communities are poorly represented in genetic medicine research and artificial intelligence-based risk prediction tools used to calculate the chance of developing future disease.
In the first report of its kind, the University of Nottingham and the NHS Race and Health Observatory have today published findings which reveal the lack of trust and targeted engagement by health commissioners, regulators and researchers.
Ethnic minority groups are largely absent from participating in studies, as outlined in findings from the 2024 study: ‘Ethnic inequities in genomics and precision medicine review report’, leading to poor health outcomes for diverse groups across a range of health conditions.
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 found 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 experts at 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, including those around language, training, translation, cultural and religious sensitivity, were discussed at the online report launch on Wednesday 5 June, chaired by the Observatory’s Senior Clinical Advisor, Dr Veline L’Esperance. “Key to improving access to genomic medicine services is accurate monitoring of the ethnicity of those accessing the services, together with monitoring outcomes of care between different ethnic groups. Achieving this will also be dependent on the right infrastructure being in place and effective collaboration between relevant stakeholders, including tailored public engagement activities appropriate to specific ethnic communities.”
Professor Habib Naqvi, Chief Executive, of the NHS Race and health Observatory, said: “Genomics and precision medicine are currently at the cutting edge of medical technology and promise a world in which treatments can be more targeted and effective. There is a risk, however, that these advances could leave behind those communities who already experience stark health inequalities. We know ethnic minority groups are under-represented in medical research and in genomic biobanks. The recommendations put forward in this comprehensive report will help ensure that genomic medicine works for everyone.”
NHS Race and Health Observatory board member and Chair of the NHS Confederation, Lord Victor Adebowale, also joined panellists at the report launch along with Chief Executive, Professor Habib Naqvi and Sadia Haqnawaz, an expert by experience, who lost her baby daughter in 2010 to genetic disorder, Autosomal Recessive Polycystic Kidney Disease (ARPKD).
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