With genomics medicine — which uses the knowledge of an individual’s genetic make-up to provide targeted clinical care — developing fast, the gathering and sharing of genetic data worldwide has become more and more important.

Yet, genomic data from India accounts for around 0.2 per cent of what has been collected to date. A new initiative involving India, Britain and Singapore hopes to change that by creating a service that will help gather and share genetic information on individuals from across India — a move that its creators say will be vital for India’s participation in this emerging area of precision medicine.

‘Beacon’

Global Gene Corp (GCC) is a Mumbai-based company formed four years ago with the intention of studying Indian genomes, and coming up with clinical solutions. It has tied up with a British initiative that has created ‘beacons’ — essentially, an online service that allows researchers from across the world to find and share particular types of genomic data — to create an India beacon, ggcINDIA.

“The beacon will be hugely significant because it allows us to share with people, and it will allow them to share with us. Maybe, if a scientist has a question, we may have the answers coming out of our beacon,” said Dr Jonathan Picker, Chief Scientific Officer and co-founder at GGC, and a Clinical Geneticist at Boston Children’s Hospital, at the launch of the beacon at the Wellcome Genome Campus near Cambridge, earlier this week.

The expansive campus is home to many organisations working on cutting-edge research on genomics, including the Global Alliance for Genomics and Health, a collaboration of over 400 health care and research institutions that set up the beacon network.

Some of the beacons are based in other countries, including the India beacon, which will be based out of Singapore. The Indian beacon will be the first one to focus on an Asian population. While the collection of genomic data in India is taking place, it has largely been on a sporadic basis to date, with little opportunity to be shared, and fed into, globally.

Many of those who attended the launch spoke of the significance the India beacon will have, aiding institutions to widen the genomic data they have access to, and ultimately helping identify the causes and treatment for diseases in an affordable way.

“Solving healthcare problems at scale is exceptionally important for India to ensure quality of life for our 1.3 billion citizens. Cutting-edge genomics will provide truly innovative solutions that will benefit individuals and the population as a whole,” said Deputy High Commissioner of India to the UK Dinesh Patnaik, who launched the beacon.

“Genomics is at a tipping point. We are at a point where the technology is there, the cost has come down and people are truly starting to make sense of what this is — combining to give us something that really impacts the end patient. The next few decades will belong to genomics and precision medicine. We want India to be a major part of it — that is our objective,” said GGC CEO Sumit Jamuar.

Ethnic data

Dr Picker highlighted the significance of getting data across ethnic groups: “If we take diabetes — which is a problem worldwide, but a huge problem for Indians — the Body Mass Index cut off is 22.9 from healthy to overweight; for Caucasians, it’s 24. So the question is: what are the genes that are making Indians, from the North to the South, develop diabetes, cholesterol problems and ultimately heart attacks? If we can find that out, we have the edge on getting a better treatment for it.”

“It’s also important for the West and the diaspora. Those populations are not represented by genome projects studying Caucasians,” he added.

GGC hopes to collect data on around 1 lakh genomes — each an individual’s entire genetic material — over the next year, and continue expanding beyond that. Gathering information on as larger a number of individuals as possible is essential, particularly for the study of common diseases, Picker said.

“There are around 20,000 genes in the body; so even if there are 10,000 people, you haven’t studied even half the number of people as there are genes; and each gene has so many variants. You need a large number of people to study diseases in a very impactful way.“

Genes responsible for a condition in one person may not necessarily be responsible for it in another. “We did a study that showed genes that are considered pathogenic in the West are common in India and don’t cause problems,” Picker said. “The last thing you want to do is suggest people have a problem they don’t have.”

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