Partnership announced to improve diversity in patient access to genomic medicine in the NHS

Generations of Black, Asian and minority ethnic communities could reap the benefits of genomic and precision medicine following the commissioning of a new study. The NHS Race and Health Observatory (RHO), in partnership with NHS England, has today announced an 18-month research project award to investigate the disparities faced by ethnic minority patient groups across access to, and delivery of, the NHS Genomic Medicine Service (GMS).

This collaborative project will be delivered through a partnership involving the South East NHS GMS Alliance, Oxford University, Central & South NHS GMS Alliance, and the NHS RHO. Together the team will examine racial and ethnic biases in genomic service access and delivery, addressing where disparities and barriers exist thorough the undertaking of national and regional assessments of ethnic health inequalities in patient pathways.

The RHO’s recent review, “Ethnic inequities in genomics and precision medicine” identified a significant lack of health equity data in the provision and utilisation of genetic medicine services. This limited understanding of which communities are accessing genomic services risks widening existing disparities.

The over representation of European ancestral populations in genomic databases has resulted in misdiagnoses, poor understanding of conditions, and inconsistent delivery of care, as well as mistrust. As a result, genomic medicine may not always benefit all people equally.

In October 2018, the NHS GMS for England was launched to ensure equitable access to genomic testing across the country. In 2022, NHS England published a five year strategy for embedding genomics in the NHS. The strategy included a commitment to establish an NHS Genomics Ethics, Equity and Legal Advisory Group, with a role in ensuring that the NHS GMS provides equitable access to all patients.

The Group was stood up in 2024 and has begun to consider how it can support the NHS RHO work as well as other work to review data from a range of sources to identify actions to address inequalities within the NHS GMS. The work will explore how genomic medicine can best serve diverse communities and what needs to happen to ensure existing biases are addressed and removed.

It will also showcase methods for improvements in public health promotion of personalised medicine that increase trust and engagement with patients and communities.

Professor Habib Naqvi, Chief Executive, NHS Race and Health Observatory, said:

“Genomic medicine promises a world in which treatments can be more targeted and effective leading to better outcomes for patients. Whilst this innovation is groundbreaking, we must ensure that it has the potential to benefit everyone and that these advances do not leave behind those communities who already experience stark inequalities. By working with NHS England and partners, we can deliver practical solutions to reduce health disparities and improve access to innovative, life-changing healthcare services.”

Dr Veline L’Esperance, Senior Clinical Advisor at the NHS Race and Health Observatory, said:

“This project is a critical step in addressing the inequities that exist in genomic medicine. We know that Black and ethnic minority communities have historically been underrepresented in research and have faced unequal access to care. By working collaboratively across NHS services, we can begin to dismantle these barriers and ensure that precision medicine truly benefits everyone. This work is long overdue and will lay the foundation for a more inclusive healthcare system.”

The national NHS genomic testing service is delivered through a network of seven regional NHS Genomic Medicine Services, each responsible for coordinating consistent and equitable services for their region.

 Dr Frances Elmslie, Clinical Director for the South East GMS Alliance, said:

“Genomics is at the cutting edge of healthcare, but to achieve its full potential, we must ensure that no communities are left behind. This project, in partnership with the NHS Race and Health Observatory, will help us better understand where disparities exist and how we can eliminate them. We are committed to creating a healthcare system where precision medicine is accessible to all patients, regardless of their ethnic background.”

Professor Anneke Lucassen, Director of the Centre for Personalised Medicine at the University of Oxford, said:

“Genomic medicine promises many improvements in healthcare, but we must ensure it is available to all, and that existing biases in genomic data are addressed. Doing so involves understanding the complex socio-cultural dynamics that constitute ethnicity and their implications for capturing genomic diversity. This work will examine these complexities and explore the fluid and overlapping concepts of race, ethnicity, ancestry and heritage to improve access for all.”

Philandra Costello, Lead Nurse at Central and South GMS Alliance, said:

“Across the NHS GMS geographies, we have been investigating the state of play for Black and ethnic minority communities, with research suggesting that disparities are apparent. On the ground, we want to widen access to genetic testing and participation in research for all communities, removing barriers and ensuring we are offering the benefits of genomic medicine to underrepresented groups. We’re really excited to be working with the RHO, University of Oxford, and our colleagues in the South East to continue advancing this work. Together, we aim to leverage our combined expertise and resources to ensure that diverse communities are engaged, informed, and valued throughout the project.”