Identification and assessment of ethnic health inequalities that exist within the Genomic Medicine Service

The NHS Genomic Medicine Service was commissioned in October 2018 by NHS England. This service aims to deliver consolidated, state of the art, high throughput and high quality genomic testing (including both genome and exome sequencing) with equity of access for patients affected by rare diseases and cancer. Early findings from the Observatory’s precision medicine review have identified key areas of improvement, including inequalities in access for Black and minority ethnic patients and poor ethnicity data collection within the wider Genomic Medicine Service.

A limited understanding of the ethnicity profiles of those accessing genomic services risks excluding communities in the collection and use of their genomic data. The overrepresentation 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

The Observatory is partnering with NHS England to oversee this research on: identifying and assessing inequalities that may exist within the NHS Genomic Medicine Service. This unique partnership centres on identifying and understanding racial and ethnic disparities in the access and provision of genomic services and to utilise implementation science to address disparities in genomic medicine.

This invitation to tender calls for a mixed-methods research project employing qualitative and quantitative approaches to provide rich and deep insights into the topic area, generating more knowledge, and increasing the validity of the findings. Overall, this programme will comprise five work packages, a subset of which we are seeking external collaborators to support in the delivery of. Bidding organisations will be expected to work closely with the NHS Genomics Unit and the Observatory’s Senior Clinical Advisor.

More information can be found in the Invitation to Tender PDF document here.

We welcome submissions from all interested organisations.  Tender submissions should be made by Tuesday, May 14 2024.