Who we are
Genomics England’s delivery of the 100,000 genomes project was a major contribution to the UK becoming the first country in the world to introduce genomic medicine into routine use in its healthcare system, helping doctors deliver quicker diagnoses, more tailored treatments and more personalised care to patients. We continue to work in partnership with the NHS as we move towards bringing genomic healthcare to all who need it, and make sure that the UK’s population diversity is reflected in the data that it holds and the research that takes place with it.
The Diverse Data Programme
The Diverse Data programme at Genomics England aims to make genomic medicine and its insights work for everyone. The programme will work with NHS England, grassroots communities, training institutions and other partners, to overcome the challenges caused by the lack of genetic data diversity.
This will include developing tools and approaches to enable researchers and clinicians to better interpret genomic variation to support clinical decisions in all communities, and build resilient and trusting relationships within traditionally excluded communities.
Why it matters
To date, studies of human genetics have largely focused on populations from European ancestries, which has contributed to
a world where the benefits of genomic healthcare are not shared equally. The overrepresentation of populations from ‘WEIRD’ societies (Western, Education, Industrialised, Rich and Democratic) in genomic databases has resulted in the misdiagnosis of gene-disease relationships, limited the generalisability of findings from genomic research, and reduced the evidence base for translating these findings into clinical care for all populations.
In short, not everyone benefits equally from the best and the latest insights in genomic medicine.
Why your stories
To address this gap, we know we must work across the whole pipeline of genomic research and health care delivery, from the populations we work with and the data we collect, to the analyses we carry out and the availability of genetic testing.
This is a huge undertaking, and not something we can do alone. Across the globe, policymakers, patients, researchers, technologists, clinicians and companies are all taking concrete actions to addressing the lack of data diversity in genomics.
We want to start by bringing all these efforts, ideas, initiatives and perspectives together in one place, to show that in order to truly address challenges of data diversity, we need a diverse range of voices and efforts to do so.
The first step to change is acknowledging the problem. We hope that Mind The Gap: Stories of Health Data Equity does just that.
We've loved working with experts, activists, scientists and students, from major global institutions and grassroots organisations (as well as illustrator extraordinaire Lily Kong), and we're only just getting going!