Stark exclusion of ethnic minorities in genetic research must change, say experts

Recently launched trials of a “personalised” cancer vaccine that uses mRNA technology to activate a patient’s immune response were not just a boon for the future of genomics and precision medicines but, at first glance, for diversity in UK science.12

Both the principal investigator—consultant clinical oncologist Victoria Kunene—and the first patient to receive an experimental jab at University Hospitals Birmingham NHS Foundation Trust—Elliot Pfebve—are black.

But a detailed analysis examining inequity in this area shows that underrepresentation of ethnic minority groups in genomics datasets, research studies and development of genetic medicine services is the norm.

It must be corrected urgently if effective personalised treatments for cancer and other diseases are to benefit whole populations rather than worsen existing healthcare disparities, say experts.

Speaking on 5 June. Victor Adebowale, board member of the NHS Race and Health Observatory, said, “Ethnic health inequalities are rife in this area, both in terms of who works in it, the kind of research that’s done, and engagement with communities. That’s unacceptable.”

“There is an urgent need for critical changes to be made in the way in which genomic services are accessed, how they’re led, and how future research is conducted if we’re going to reduce health inequalities and inequity and improve outcomes for ethnic minority communities,” he said.

Adebowale, who also …