Diverse Data

The initiative aims to tackle underrepresentation within health data with the goal of supporting equitable outcomes of genomic medicine for all.

Equity in Health Research

We aim for the development of genomic research that is representative and benefits communities from genetically diverse ancestry

The gold standard for improving equitable outcomes from genomic research is to increase representation of those of diverse ancestry to take part in research. However, more diverse datasets do not guarantee equitable outcomes in the beneficiaries of genomic research. 

As guardians of the National Genomics Research Library, we ensure that any research taking place using data we hold does not further widen any health inequities across the UK population. We have five independent committees that guide our governance and policy: the Participant Panel, the Access Review Committee, the Ethics Advisory Committee, the Science Advisory Committee, the Research Network Committee.

Want to know more about our Committees and how they work? Visit the Participant Panel webpage.

Our vision is to enable change by developing solutions, tools, and recommendations for better practice to improve equity in genomic medicine and research.

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About Equity in Health Research (EHR)

This major programme within the Diverse Data initiative aimed to bridge conversations, turning recommendations from those of diverse ancestry and those within the wider ecosystem into practice.

By engaging with communities of diverse ancestry on topics important to address inequities in health outcomes and research, alongside a wider professional stakeholder network where issues on diversity in health datasets is important, we aimed to further understand how we can all work together to ensure that everyone can benefit from genomics research and medicine.

Who we worked with

The Equity in Health Research workstream focussed on generating insight and learnings through a set of public and professional dialogues. Dialogues were chosen as they are a well-established engagement mechanism through which members of the public and/or professionals deliberate over complex topics to which there are no definitive answers. They are often used by government, local councils and government funded bodies when decisions might be contentious with members of the public, to ensure they are made responsibly and with public input and support. The aim is usually to feed into policy development and/or decision making.The workstream was led, delivered and managed by people of non-European ethnicities.

What did we find?

These are some of the themes we heard from the dialogues:

- Communities of diverse ancestry are distrustful of researchers and research organisations. Organisations such as Genomics England should demonstrate their trustworthiness and continuously work towards building trust with underserved communities.

- Public engagement should be a two-way process with numerous opportunities to feedback. Sustained engagement practices should take place from study design to study completion.

- Representativeness should be at every level – from our participants and our independent committees to our workforce.

The lessons we have learnt through this workstream are guiding how we move forward in embedding equity in how we work. For example, there are other equity workstreams in Genomics England, such as in the Generation Study.