Improving Genetic Medicine for Ethnic Minority Groups

In 2019 a nationally commissioned Genomic Medicine Service (GMS) was established to deliver high-quality genomic testing for patients affected by rare diseases and cancer in England. A key aim of the new GMS was to encourage equity of access between different patient groups, including ethnic minority groups. A report produced by the NHS Race and Health Observatory in 2024 pointed to several barriers which remain to be addressed in trying to ensure that people from diverse backgrounds can access GMS services and genomic research and highlighted that a paucity of ethnicity recording makes it difficult to measure equity of access between different ethnic groups. Insights into the lived experiences of ethnic minority groups with reference to genomic testing in the UK are limited. Even when studies have included diverse voices, they are often aggregated with other minority ethnic groups, assuming collective experiences. We will conduct interviews and group discussions with lay people, community organisers and charity workers, people who have had direct or indirect contact with the genomic medicine service and professionals within the service. Some of our participants will be recruited from community settings. Others will be recruited from healthcare settings where they will be identified from a mixture of retrospective and prospective recruitment. The overarching aim of this study is to capture the experiences of ethnic minority populations within regional genomic medicine services and to identify specific changes that are needed to promote equity and cultural competence within those services. While we recognise that it will not be possible to derive recommendations which are applicable across all ethnic minority groups and the entire GMS, our work will serve as an exemplar to others who wish to undertake similar work with their specific population.