Diverse Data Initiative
To date, studies of human genetics have largely focused on populations from affluent European ancestries, which has contributed to a world where the benefits of genomic healthcare are not shared equally. This affects the whole pipeline of genomic research and healthcare delivery; from the populations we work with and the data we collect, to the analyses we carry out and the availability of genetic testing.
Genomics England have launched the ‘Diverse Data’ initiative which will work in collaboration with researchers and the NHS, with the ultimate aim to tackle this healthcare inequality and ensure the benefits of genomic healthcare can be applied to anyone, regardless of their ancestral, socioeconomic or geographic background.
What we’re hoping to achieve with the Diverse Data initiative
In the short term, we aim to increase the representation in genomic datasets through partnership and tailored sequencing efforts.
In the longer term, we’ll be looking to build trusting and resilient relationships with historically-underrepresented communities. This will also support the UK’s future genomic efforts.
How we plan to achieve this
Understand the data gaps
- Define what ‘diverse data’ means – for whom, under what circumstances, why and with what impact.
- Synthesise the latest research, good practice and case studies of those working to improve genomic equity.
Bridge the current data gap
- Curate and generate tools, practices, systems and datasets to support clinicians and researchers to better understand the challenges around genomic inequalities.
- Work closely with practitioners to ensure adoption and use of good practice.
Spark an equitable genomic healthcare revolution
- Rally the genomic community and key champions around the need for diverse data.
- Develop effective and long-lasting relationships with traditionally excluded groups.
- Hold the genomic medicine organisations, institutions and communities to account to deliver equitable genomic healthcare.