Ambitious health study recruiting 1 in 10 UK adults
Image credit: Our Future Health
The Our Future Health study hopes to address the diversity problem in genomic datasets as it continues its recruitment of five million volunteers
The UK’s largest ever health research programme, Our Future Health, is recruiting five million adult volunteers to help create a genomic dataset that mirrors the UK’s diverse population. Researchers hope that having a large, ethnically diverse dataset will uncover ways to detect cancer and disease pre-symptomatically, bringing forth new treatment opportunities for future patients.
Volunteer recruitment for the study opened to all in October this year in West Yorkshire, Greater London, Greater Manchester and the West Midlands, and in the coming months it will be extended country-wide. It will be the only national programme enrolling volunteers across England, Scotland, Wales and Northern Ireland.
Adding diversity through recruitment
Around 1 in 10 UK adults (figure based on population data) will need to participate in the study in order for Our Future Health to meet its target of five million volunteers. To meet its diversity targets, as Our Future Health noted here, about 11% of volunteers will need to be recruited from black, Asian and other ethnic minority backgrounds.
Historically, ethnic minority populations have been under-represented in genomic studies, presenting a danger of health inequity in these communities. Having a representative genomic dataset will give researchers insight into how diseases begin and progress in both men and women, and to what extent background is a factor.
The Our Future Health study, which is being run in partnership with the NHS, will reach out to these communities by having a local presence, for instance in selected shopping centres and some high street pharmacies. The same strategy of engaging directly with communities was previously employed by the 100,000 Genomes Project, which completed its recruitment in 2018.
The study is also recruiting via letter, with over three million invitations scheduled to be sent to households across the UK.
What’s involved?
Those wishing to take part will be asked to, among other things, give a sample of blood and complete a questionnaire. As the research focus is on understanding disease risk factors, volunteers will be asked questions that aim to shed greater light on disease prevention and early detection. In return for their participation, they are entitled to request future updates on their health risks based on analysis of their genome.
The study is taking place over a long time. Volunteers can opt in or opt out of being contacted in the future – for example, with requests to answer further questions, take part in additional health tests or participate in further research into diseases like cancer, cardiovascular disease, diabetes and dementia.
“With the help of up to five million people, we’ll be able to dramatically improve our understanding of how to detect and prevent diseases so in the future everyone can live in good health for longer,” said Our Future Health chief medical officer Dr Raghib Ali.
The Our Future Health study is a step forward in the government’s goal of sequencing five million genomes, a vision announced in 2018 by then health secretary, Matt Hancock. Initially this goal was known as the Accelerating Detection of Diseases (ADD) challenge.
Click here to learn more about Our Future Health, including how to sign up as a volunteer.