The world’s largest community-based genetics study has launched in east London aiming to improve health among people of Pakistani and Bangladeshi heritage by analysing the genes of 100,000 people.

As part of East London Genes & Health, researchers will analyse the medical history of South Asian people to study the links between genes and environment in causing disease. The results will inform health care for the entire local population.

The project is led by Queen Mary University of London (QMUL) and supported by £4million in funding from the Wellcome Trust and the Medical Research Council. Recruitment of volunteers is the first step.

Prof David van Heel, who is co-leading the study at Queen Mary University of London, said: “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 and we need local support to make it happen.

Prof David van Heel, who is co-leading the study at Queen Mary University of London
Prof David van Heel, who is co-leading the study at Queen Mary University of London

“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.”

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.
  • Tower Hamlets and Newham have the lowest life expectancy of all London boroughs.

QMUL in partnership with Barts Health NHS Trust and charity Social Action For Health will now begin recruiting participants from Tower Hamlets, Newham and beyond.

Volunteers, whose details will remain confidential, will donate a saliva sample which will then be examined for genetic information and this will be linked with an individual’s health records.

Prof Van Heel said: “One of the best aspects is how easy it is to get involved. To take part you will be able to pop down to your local GP surgery, mosque, community centre – or through our website get a pack sent to your home so you can do it in private.

“It’s just spitting in a test tube and answering a few questions, but in doing so you’ll be making a valuable contribution to the future of healthcare, for the next generations, both locally and beyond. The local support we’ve received so far has been fantastic and now we need to really spread the word.”

Prof Richard Trembath, QMUL vice-principal for health said: “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.

Signing up for the study
100,000 volunteers are being supported from local South Asian communities

“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.”

The East London Genes & Health 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 using the data gathered to support medical research.

The team will study so-called “knock-out genes” to better understand how they impact health in a positive way, such as lowering cholesterol, with the hope of eventually developing 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.

Prof Trembath said: “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”

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