World’s largest community genetics study launches in East London

The world’s largest community based genetics study, has launched today, aiming to improve health among people of Pakistani and Bangladeshi heritage in East London by analysing the genes and health of 100,000 local people. These studies will be enabled by the development of a new clinical research facility, funded as part of the MRC Clinical Research Infrastructure initiative.
Led by Queen Mary University of London (QMUL) and supported by £4m in funding from the Wellcome Trust and the MRC, researchers will study the genetic code and medical records of local South Asian people – with the aim of improving understanding of the links between genes and environmental factors in causing disease. These findings will then contribute to improving healthcare and the long-term prevention and treatment of a number of diseases particularly affecting local communities and the wider population, such as heart disease and diabetes.
East London boroughs, and Pakistani and Bangladeshi communities in particular, have some of the highest rates of poor health in the UK. For example:
Pakistani men have the highest rate of heart disease in the UK and the risk of dying early from heart disease is twice as high among South Asian groups compared with the general population.
People from South Asian communities are five times more likely to have type 2 diabetes than the general population.
Newham and Tower Hamlets have the lowest life expectancy of all London boroughs.
Professor David van Heel, who is co-leading the study at Queen Mary University of London, comments: “Not only do South Asian people have some of the highest rates of poor health in the UK, they are also markedly under-represented in medical research and therefore not likely to benefit from the advances in genetics which are shaping the future of medicine. We aim to change this by gathering a unique dataset which will then be harnessed by approved health research studies taking place locally, nationally and internationally.
“By recruiting 100,000 people from the local community, we are giving East London people the opportunity to play a key role in improving the health of future generations, including enhancing our understanding of why certain people get diseases and the development of improved treatment and prevention.”
Following enrolment of 46 local individuals, QMUL in partnership with Barts Health NHS Trust and local charity Social Action for Health will now begin recruiting participants aged 16 and over from East London. The study is open to adults with and without health problems who regard themselves as of Bangladeshi, British-Bangladeshi, Pakistani or British-Pakistani origin.
After giving consent, volunteers will donate a saliva sample which will then be examined for genetic information and this will be linked with an individual’s health records. Participation in the study is completely confidential, and no identifiable details (such as name or address) will be passed on or shared.
Professor Richard Trembath, Vice-Principal for Health at Queen Mary University of London, comments: ““We are seeing positive effects of East London regeneration every day – in the London 2012 Olympics and Crossrail development – but we urgently need regeneration of East London health. The launch of East London Genes & Health is a milestone for Queen Mary University of London. However, we believe strongly that the project does not belong to us, but to the community of East London as a whole.
“This is the first time a large-scale genetics study has focussed on two distinct ethnic minority groups, with high levels of health concerns in the community and the potential for significant genetic variation.  Not only do we believe these findings will play a key role in tackling health inequality locally and in the UK, we hope to reveal crucial information about the link between genetics and common diseases which will have significant international impact on healthcare.”
The East London Genes & Healthopens in new window study will work in two stages. Stage one, taking place over the next four years, will focus on recruiting 100,000 participants. Stage two, running until 2034, will focus on utilising the data gathered to support various local, national and international medical research, including recall of certain participants for further studies. The study aims to increase our understanding of the following:
Drug response: why do people of certain ethnicities suffer severe adverse drug reactions, and is there an underlying genetic cause?
Diabetes: looking into how people respond to treatments and whether rare types should be treated differently.
Heart disease: studying genes among people with very high or very low cholesterol, to better understand why heart disease and strokes occur.
Genetic variation: how do genes vary from person to person in the adult Pakistani and Bangladeshi communities, what is ‘normal’?
Knock-out genes: when a healthy person has two copies (inherited from both parents) of a gene that functions differently to the norm, and how this information can be used to influence medicine and the development of new treatments.
East London Genes & Health is different to other genetic sequencing studies because of its focus on two distinct UK ethnic minority groups – with a unique range of genetic variation and high levels of health deprivation – and access to local electronic NHS health records.
The study of genetic variation is crucial in helping us better understand the ‘normal’ variation in Bangladeshi and Pakistani genes, which will then help the diagnosis of inherited rare diseases. In addition, the team will study knock-out genes in order to better understand how they impact health in a positive way (such as lowering cholesterol) with the hope of eventually developing drugs or treatments which block ‘bad’ genes and enhance ‘good’ ones. Knock-out genes are rare in the general population but the chances of carrying one is increased when a person’s parents are related, as is more common among Pakistani and Bangladeshi communities.
Professor Richard Trembath concludes: “Right now we’re only scratching the surface of genetic data and its power. Large-scale studies like East London Genes & Health have the potential to reveal crucial information on health and disease. We look forward to contributing to the UK’s growing expertise in this vital area of medicine.”
Dr Michael Dunn, Head of Genetics and Molecular Sciences at the Wellcome Trust, added: “Linking genetic information to health records, in a secure and controlled way, has the potential to transform healthcare in the 21 century by enabling us to personalise disease prevention strategies, diagnostics and treatments based on an individual’s genetic make-up. It’s important that people from all ethnic backgrounds are represented in this research so that the UK as a whole, and populations around the world, can reap the benefits of the genomic revolution.”
Dr Nathan Richardson, Head of Molecular and Cellular Medicine at the Medical Research Council, said: “The unique research facility in East London will enable detailed medical studies of ethnic groups that have been poorly represented in genetic research to date. Studying the gene differences amongst the British South Asian population on such a large scale will not only help to improve the health of these communities, but offer exciting opportunities to reveal the function of our genes and how genetic defects cause disease across the whole community”.
For details on how to participate in the East London Genes & Health study or for more information, visit www.genesandhealth.org opens in new window.
East London Genes and Health is also supported by Barts Charity.