On 9th January 2025, we celebrated the creation of a new partnership between the University of Oxford and two Genomic Medicine geographies, South East and Central & South to generate evidence and design the solutions needed to tackle some of the inequalities and barriers that prevent genomic medicine being equally accessible to all. Funded by the NHS Race & Health Observatory, we will undertake a research and engagement programme over the next 15 months to understand the complex socio-cultural dynamics that constitute ethnicity and their implications for capturing genomic diversity.
The launch meet of this partnership was hosted at the Centre for Personalised Medicine, St. Anne’s College, University of Oxford. At the event, Dr Veline L’Esperance, Senior Clinical Advisor at the NHS Race and Health Observatory, highlighted the importance of this project in foregrounding the concerns of minority ethnic communities. She further pointed out the need for addressing public mistrust in healthcare services. Prof Anneke Lucassen, Director of the Centre for Personalised Medicine at the University of Oxford, underlined how collaborative research, involving communities and professionals in co-designing recommendations, is a necessary pathway in ensuring equitable healthcare. Dr Frances Elmslie, Clinical Director for the South East Genomic Medicine Service Alliance reiterated our commitment to better understand where disparities exist in the delivery of genomic medicine services and explore measures to eliminate them. Dr Nishtha Bharti, postdoctoral research fellow with the Clinical Ethics, Law and Society group at the University of Oxford shared initial research findings from her study exploring healthcare professionals perspectives on the challenges that arise from the varied and intersectional aspects of conceptualising race, ethnicity, and ancestry in genomics.
Dr Shwetha Ramachandrappa, Consultant in Clinical Genetics at Guy’s and St Thomas’ NHS Foundation Trust, lead a roundtable discussion with a diverse group of patient representatives, healthcare professionals and researchers. Dr Ramachandrappa shared her experience of working with Bangladeshi and Pakistani communities and emphasised the need for treating community members’ voices sensitively, so that research findings reflect their authentic perspectives. Philandra Costello, Lead Nurse at NHS Central and South Genomic Service Alliance discussed how poor translation of healthcare material and absence of suitable interpreters could undermine a project’s success among ethnic minority groups.
Prof Eamonn Sheridan, Medical Advisor to the NHSE Genomics Unit stressed the importance of utilising appropriate language in equity initiatives and the need to avoid terms like ‘hard-to-reach communities’, opting instead for ‘communities that are not heard’. The round table discussion also benefitted greatly from the inputs of genetic counsellors, clinical scientists and pharmacists who shared the challenges they face in specialised medical environments and their efforts in navigating those challenges. Representatives of various charities such as Unique Community and Alstrom Syndrome UK further contributed to a rich conversation about encouraging cultural competency, securing transparency and building long-term trust in healthcare delivery and research.
We aim to reflect on these discussions and combine them with our experience in public engagement, collaborations with underserved communities and academic rigour to explore healthcare professional, patient and public perspectives on the challenges of improving equity in genomic care. We will use this information to devise a series of practical recommendations to disseminate through professional networks and into clinical and research practice. This work will pave the way for larger scale efforts to improve inclusivity within the genomic medicine service. The next event bringing together diverse interest-holders and the collaborators in this partnership will take place in January 2026.