Blog3rd July 2026

Building Inclusive Genomic Medicine: The Ethical Path to Closing the Diversity Gap

Segun Fatumo

Segun Fatumo, Professor and Chair of Genomic Diversity at Queen Mary University of London, shares thoughts from his guest presentation at our recent Parliamentary and Scientific Committee event exploring how embedding ethics across the innovation lifecycle can strengthen the UK’s science ecosystem.

Genomics

When I walked into the Houses of Parliament, I carried a simple but urgent message: the genomics revolution is happening, but it is not happening equally. The NHS 10-Year Plan puts genomic medicine at the centre of its ambition for personalised, predictive and preventative care. That ambition is right. Genomics could predict who will develop heart disease before symptoms appear, tailor drug doses to individual biology and identify cancer risk early enough to act. But potential isn’t performance. And performance depends entirely on the quality and diversity of the data these tools are built on.

Here’s the problem. Around 85% of participants in genome-wide association studies, the foundational research that genomic medicine rests on, are of European ancestry. African populations, who carry the greatest genetic diversity of any people on earth, remain badly underrepresented. Polygenic risk scores perform significantly worse in people of non-European ancestry. The Nuffield Council on Bioethics and Ada Lovelace Institute said it plainly in their 2024 report. These tools are not yet accurate or reliable enough for population-level use, particularly outside European ancestry groups.

This is a scientific failure with real clinical consequences. Take warfarin, one of the most commonly prescribed blood thinners in the UK. The dosing algorithms were built largely on European data. Genetic variants that affect how the drug is metabolised are more common in people of Asian ancestry. Those patients were historically overdosed. The same logic runs through pharmacogenomics broadly. Drugs calibrated on non-diverse data work less well, and sometimes cause harm in the populations left out of the research.

Ethics is what bridges that gap. Not ethics as a regulatory checkbox. Ethics as practical guidance on who gets included in research cohorts, how communities are engaged, how data is governed, whether the benefits of discovery actually flow back to the people who made it possible. Community trust, once broken, takes a generation to rebuild. We can’t afford that.

My ask of policymakers is concrete. Don’t deploy genomic prediction tools at population scale in the NHS until they demonstrably work across all the communities the NHS serves. Set minimum accuracy standards. Require ancestral diversity in the data behind commissioned tools. Fund the community engagement that makes inclusive research possible.

I’ve spent my career working across Africa and the UK on exactly these questions. The gap is real. The solutions exist. What’s been missing is the political will to make equity a condition of deployment.

Genomics done right could be one of the most powerful tools we have for reducing health inequality. Ethics isn’t the brake on that. It’s what makes it worth doing.