British Bangladeshi and Pakistani people in the UK are volunteering their genetic and health data to close a dangerous gap in medical research. People from these backgrounds suffer from type 2 diabetes and cardiovascular disease at far higher rates than White Europeans, yet they are dramatically underrepresented in the genomic studies that underpin modern drug development and disease prediction. Without studies like Genes & Health, treatments and risk assessments are built on data that largely excludes a quarter of the world’s population. The project has already contributed to the development of a new drug for a rare childhood disease, improved genetic prediction of type 2 diabetes risk, and helped uncover how genes influence susceptibility to COVID-19. This funding will sustain the study long-term, expand data collection into neglected areas such as mental health and pregnancy, and allow researchers to combine this resource with other major cohort studies. If successful, the work will help ensure that medical advances—from diagnostics to treatments—work for everyone, not just for populations already well-represented in research.
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Genes & Health is a large study involving British Bangladeshi and Pakistani people in health research. People from these backgrounds experience higher rates of ill health compared to White Europeans (e.g. type 2 diabetes and cardiovascular disease are four times and twice as common, respectively). The health inequalities faced by British south Asians are further exacerbated by their underrepresentation in health and genomic research. For example, only ~2% of participants in global genome-wide association studies (one of the commonest types of genetic study) are south Asian despite making up ~25% of the world's population. Genes & Health is succeeding in redressing some of this imbalance and is proving a valuable contributor to the global research stage. Since it started in 2015, Genes & Health has managed to recruit 50,455 volunteers, through extensive and lasting engagement with the communities it represents. Genes & Health exists as a scientific resource available for a global research community to use, thereby ensure that the greatest benefits to health are achieved from the contributions of these volunteers. Through the research that Genes & Health has already supported, it has already had several major impacts, including: i. Discovering how complete gene knockouts contribute to health and disease ii. Supporting development of a new drug (Lumasiran) for a rare genetic disease causing severe ill-health in children iii. A significant contribution to a consortium uncovering how our genes make us more susceptible to developing, or getting unwell from, COVID-19 iv. Improving the prediction of who is at risk of developing type 2 diabetes using genetic data v. Uncovering a new biological pathway involved in childhood growth and puberty Despite these early successes, Genes & Health is now at a critical phase, with its sustainability and potential for growth uncertain. With funding from the MRC Longitudinal Population Study scheme, Genes & Health will be able to sustain itself as a long-term study of health and disease in this underrepresented population of British south Asians, working together with other valuable research cohort studies for maximal benefit. This funding will also allow Genes & Health to grow and better address areas of health need which remain unmet, including mental health and pregnancy health. Our proposal focuses on the following areas: 1. Supporting the overall sustainability of Genes & Health through support of its core research team, beyond the duration of its current infrastructure funding, and to generate rich longitudinal data. 2. Delivering growth of Genes & Health 'recall' studies, where its existing volunteers are invited to participate in additional research, and where significant added value lies 3. Expanding data collection in mental health and pregnancy, to address areas of unmet health need 4. Growing the Genes & Health data resource to ensure it can be aligned to other cohort research studies to ensure analyses that are greater than the sum of their parts. To do this, we seek additional funding, which will support the input of some additional senior academic experts, and an expanded team of individuals to deliver our ambition.
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