British South Asian genetic study reaches record volunteer numbers

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The initiative benefits from £25 million of investment by a group of life sciences companies to investigate how genes may help us understand health problems, develop new treatments and support the diversification of health research data. British Pakistani and British Bangladeshi populations, which are the largest ethnic minority groups in East London, have historically been under-represented in the large genetic data sets used by scientists, doctors, and policy-makers to guide decisions about healthcare.

Genes & Health is addressing this by recruiting volunteers from British Pakistani and British Bangladeshi heritage, beginning to reverse health and research inequalities which have traditionally disadvantaged people from these communities.

The project, led by Queen Mary University of London in partnership with King’s College London, started in East London in 2015 and has since expanded to Bradford and more recently Manchester, with the 50,000th volunteer, Zahid Chauhan OBE, being the first recruit to the newly opened Manchester Genes & Health. The study is now halfway towards achieving its goal of recruiting 100,000 volunteers by 2024.

To support Genes & Health’s mission to improve the diversity of genetic data used for health research, a group of life sciences companies (Bristol Myers Squibb, GSK, Maze Therapeutics, MSD, Novo Nordisk, Pfizer, Takeda) have collectively committed £25 million of new investment to the generation of genetic data and analyses of samples donated by the 50,000 volunteers. The data will be used by health researchers around the world, seeking to address the lack of diversity seen in today’s healthcare research. The new investment will also contribute to our collective ambitions to establish East London as a major centre of excellence in life sciences, as part of its partnership with Barts Health NHS Trust through Barts Life Sciences and King’s Health Partners. Together, Queen Mary and Barts Health NHS Trust have a strong track record of delivering life-changing health outcomes, including for communities often under-represented in healthcare research and delivery. 

Cllr Ahsan Khan, a Councillor in Waltham Forest and the first Genes & Health volunteer said: “Genes & Health is an excellent resource that is making real progress in improving health in local British Pakistani and British Bangladeshi communities. The project is also helping to reduce the gap in research participation that would otherwise see health inequalities worsen in the future.”

Dr Sarah Finer, Consultant in Diabetes and Senior Lecturer at Queen Mary University of London said: “Genes & Health is doing what it said it would - bringing benefits to health deprived local communities. Our new scientific data and more volunteers will enable us to do even more to improve health in British Pakistani and British Bangladeshi communities as well as the wider UK population.”

Professor Colin Bailey, President and Principal of Queen Mary University of London said: “Queen Mary University of London is the most diverse University in the UK, serving unique and disadvantaged local communities. We are proud to bring major Life Sciences investment and jobs to the East End of London, kicking off our larger Barts Life Sciences strategy and Whitechapel campus development.”

Zahid Chauhan OBE, a local GP and Councillor from Manchester, was the first volunteer recruited to the new Manchester Genes & Health site. He said: “British South Asians are underrepresented in research and have had terrible outcomes from the COVID pandemic. I am delighted to be the 50,000th volunteer for Genes & Health and the first for Manchester, bringing the research spotlight to health inequalities across England”

Genes & Health is a long-term health study that combines genetic data with lifetime NHS health record data, with the ability to invite volunteers to return with consent for more detailed research studies. Volunteers are asked to donate saliva (spit) sample and share their GP and hospital medical records anonymously and securely with the study team. Whilst the study has three sites in East London, Bradford and Manchester, British Pakistani and British Bangladeshi people from anywhere across the UK can take part by completing a short online questionnaire and submitting a saliva sample to the research team by post. British South Asian people have the highest rates of heart disease in the UK and are six times more likely to have Type 2 diabetes than the rest of the UK population. British Bangladeshi and British Pakistani people have also had the worst COVID-19 outcomes in the UK.

The study has already had a direct impact for dozens of volunteers identified with inherited high cholesterol. As a result, doctors in the Genes & Health team were able to refer them for treatment to prevent potentially life-threatening consequences of high cholesterol, such as heart attacks. Data from Genes & Health have also been used to uncover important scientific discoveries such as: why COVID-19 affects some people more severely than others; a new treatment for a rare childhood kidney disease and a new understanding of how nutrition links to childhood growth. Genes & Health was initially funded by the Wellcome Trust and has also received support from the Medical Research Council, Barts Charity, HEFCE, and the NHS National Institute for Health Research.