Genomics England

Genomics is the study of the human genome – in other words, how our DNA affects our health, development, and other functions of the body. This includes how our DNA can influence rare conditions or cancers or how people respond to different medicines.

Genomics England is a government-owned company, whose vision is a world where everyone benefits from genomic healthcare. ​Building on its 100,000 Genomes Project, Genomics England helps to transform health by making genomics a routine part of care – unlocking better diagnoses, treatments, and prevention for everyone. It supports the NHS’s world-first national whole genome sequencing service and runs the growing National Genomic Research Library, alongside delivering numerous major genomics initiatives including the Generation Study.​ It works with the NHS, researchers, industry and its participants to enable immediate healthcare benefits and advances for the future – harnessing innovation to deliver the digital systems and evidence needed for genomics to guide up to half of all healthcare interactions by 2035.

The challenge

​In line with this vision, Genomics England recognises the importance of community engagement in building trust in the field of genomics and increasing participation in research across diverse communities. Building on its experience delivering community engagement within projects and programmes, Genomics England commissioned NPC in Spring 2025 to research community engagement models being used across the UK, and to make recommendations to strengthen its future organisational approach.

The approach

For this work, NPC developed a set of learning questions with Genomics England and then explored these through four main workstreams:

Review: we read through existing strategies and processes shaping current community engagement at Genomics England. This helped to uncover how engagement is currently understood and where practices are being developed and implemented.

Understand: we conducted a literature review of over 30 best practice documents from UK and international organisations, including research, other organisation’s strategies, and evaluation. This helped paint a picture of engagement approaches, trade-offs, challenges, and successes experienced by a range of organisations across different sectors, as well as those unique to genomics.

Listen: we spoke with internal and external stakeholders, carrying out interviews with Genomics England staff involved in engagement, policy, research as well as senior leaders. This helped us build a shared understanding of Genomics England’s ambitions, the typologies in use (or implied), and the broader policy and practice context around community engagement and public involvement in research.

We also held interviews with external organisations. These conversations provided insight into the practical realities of engagement across different models. They also helped surface common tensions, such as the establishing the right degree of power-sharing; building community trust; engaging with underrepresented groups; and evidencing impact.

Reflect:  finally, we held a reflection session with staff from across Genomics England who have an interest in community engagement, or whose work is directly impacted by it. The session provided space to explore shared questions around how the organisation defines ‘community,’ why and when engagement takes place, and the core purpose of engagement work. Participants then reflected on the potential of different models of community engagement for Genomics England in future.

The result

At the end of the project, NPC delivered a report summarising its research and associated recommendations for Genomics England. Some of these were strategic – for example, setting shared organisational definitions of key terms, and agreeing priority communities for engagement work – and some were practical, exploring specific models that can be used for delivery and to ensure knowledge sharing within and beyond Genomics England. Genomics England reflected that the objective framing and structure provided by the research has helped influence its future approach to community engagement and the policies, practices and processes needed to enable this.