#18 The Genome India Project: A Step Toward Self-Sufficiency in Genomic Research
Welcome to the eighteenth edition of Policy Mandala. We have structured this edition on a 1-1 structure, 1 detailed analysis and 1 book recommendation. Enjoy Reading!
Analysis Mandala: Deepening Policy Understanding
Below, we discuss one recent policy update from the past week(s), and analyze them for you: Let’s go!
Have you ever taken a pill and felt like it didn’t quite work as expected?
Who’s to blame? Is it the medicine? The manufacturers? Or something else? Well, the answer might surprise you—it could be your own body, to be precise—your genes.
Here’s the thing: the exact same medicine can have vastly different effects on different people because of variations in genetic makeup. Most medicines are developed and tested on populations in Europe and the U.S., where genetic structures differ significantly from ours. So, a drug that works perfectly for someone in London or New York might not work as effectively for us.
Take the simple example of a drug named warfarin, a blood-thinner. It works well for most Western patients, but for many Indians, it can cause dangerous bleeding if not dosed carefully. You see the wider point: Our genes handle medications differently, whether it’s for cancer, heart disease, or diabetes—and ignoring this is like trying to fix a car with the wrong manual.
But things are about to change—enter the Genome India Project!
Before we get to what the Project is, let’s quickly clarify what gene, genome and genomic sequencing is, because you are going to see them frequently throughout the article. So, ready for some biology lessons, in Policy Mandala style? Let’s go.
In simple terms, genes are like tiny instruction manuals. Just like how a recipe in a cookbook tells you how to make a dish, genes give your body the instructions on how to make everything it needs to function properly.
If genes are like individual recipes, then the genome is the entire cookbook! The genome is the complete set of genetic information in your body – basically all the instructions that make you, you! It includes everything from the color of your hair to how tall you might grow to how your body responds to certain foods or medicines.
Genomic Sequencing then, is the process of reading and translating the cookbook to a language the scientists can understand, and act upon.
Why does all this matter? Well, once we understand a person’s genome, doctors can make much better decisions about their health. For example, they can give you medications that work best for your body’s genetic makeup, saving you from trial-and-error approaches that rely on treatments meant for someone else. It could even lead to more effective prevention strategies, so we catch diseases early when they’re easier to treat.
Now let’s come to the Genome India Project (GIP).
India’s genetic diversity is a big deal. We’ve got people from different ethnic groups, languages, and regions – so, unsurprisingly, our genes are pretty diverse too. But here’s the problem: Global genomic research has mostly focused on populations in Europe and the U.S. For a long time, India’s genetic profile has been underrepresented in this research.
Did you know the gap in this representation? Well, it’s almost 100 times underrepresented: While India makes up 20% of the world’s population, the genome sequences of Indians account for just 0.2% of global genetic databases. Surprised, right? So are we!
And it’s a big deal. This is what the GIP wants to remedy. The GIP is like India’s very own genetic research lab. The goal? To create a genomic database that reflects India’s huge genetic diversity.
In short, it’s about making healthcare smarter, more accurate, and, well, more Indian.
So far, the Genome India Project has collected samples from 19,000 individuals, successfully sequencing the genomes of over 10,000 individuals across 99 ethnic groups, making it one of the world’s most comprehensive databases. The second phase seeks to expand the database to cover 10 lakh sequences, which will include more ethnic and linguistic groups in the country. Over 4,635 distinct population groups have already been identified to be covered in the database.
But the beauty of the Genome India Project goes beyond the benefits for India alone. As the project progresses, India has the potential to become a leader in genomic research, especially in regions with genetic similarity and similar genetic diversity. South Asian and Middle Eastern countries, for example, could benefit immensely from India’s expertise and the possibilities for global collaboration are endless.
Countries like China and the U.S. have already made huge strides in genomics. China, for example, launched the world's largest human genome research project in 2017 with the aim of documenting the genetic makeup of one lakh people. The U.S. has the All of Us Initiative, aiming to gather genetic data from diverse populations. So, while India might be a bit late to the game, it’s catching up fast.
And mind you, the GIP is no small feat. Sequencing genomes require advanced technology, expertise, collaboration and, of course, money. So, who’s funding this mega-project?
The Department of Biotechnology (DBT) under the Ministry of Science and Technology, is leading the initiative with support of various scientific organizations and universities. Headed by Dr. Jitendra Singh, the Minister of Science and Technology and a medical doctor himself, the project is expected to receive a substantial budget allocation, crucial for its long-term success.
It is also important to read it along with the gene editing research happening in full swing in the country, particularly for cure of diseases like sickle cell disease prevalent in the scheduled tribes in the country. India has had impressive growth in bio-economy, which has surged from 1000 crore in 2014 to over 13,000 crore in 2024 and with projections to hit 30,000 crore by 2030, which Dr. Singh highlighted. The rapid rise of biotech startups—from just 50 in 2014 to over 8,500 in 2023—also demonstrates India’s growing leadership in biotechnology.
So is it all about health then? Nope. India’s genomic journey goes far beyond hospitals and labs. The GIP opens a fascinating window into India’s rich genetic diversity, which holds stories of migration, adaptation, and evolution spanning thousands of years. This means we’re not just looking at the future of medicine but also uncovering the secrets of ancient human history—how cool is that? Here’s an early study on it, if that’s something of your interest.
It gets even more interesting. Genomic research could revolutionize agriculture. By analyzing genetic data, we can breed crops that are tougher against pests, diseases, and climate change. That’s right—this research could mean more resilient crops and a more secure food supply for the future.
In a nutshell, the Genome India Project is like a treasure chest of possibilities—better health, fascinating insights into human history, and smarter solutions for the challenges ahead.
But while appreciating its immense potential, let’s not forget that no policy really comes without its fair share of challenges: Privacy and Access to data.
Genomic data is deeply personal – it’s essentially a genetic fingerprint of who we are. And there’s always a worry that this data could be misused. Imagine if your genetic information were sold to insurance companies or the pharma guys – doesn’t sound okay, right? So, ensuring data privacy and security should be a top priority.
The DBT has made it clear that there will be regulated access to the genomic data and has launched Framework for Exchange of Data (FeED) Protocols under the Biotech-PRIDE (Promotion of Research and Innovation through Data Exchange) Guidelines. But not only is the guideline silent on what happens in terms of breach, it is also legally non-binding. It is simply “an enabling mechanism to share and exchange information and knowledge generated as per the existing laws, rules, regulations and guidelines of the country”.
As of now, India does not have any comprehensive legal framework for the process of genomic data transfer. India’s much-awaited Digital Personal Data Protection Act (DPDP), 2003 does not specify anything with regards to this other than restrictions on sensitive data, which it has left undefined (we discussed the DPDP in Policy Mandala #16). As we progress in genomic data research, ensuring the data is not misused is critical.
There are also ethical concerns around informed consent. People need to understand what their data will be used for, and they must have a say in how it’s shared. After all, it’s your gene we’re talking about, and you should know who’s looking at it.
Well, to conclude it’s is important to realize that the Genome India Project is much more than just a scientific endeavor; it’s about shaping the future of healthcare in India. From personalized medicine to identifying genetic risks early on, this project holds the promise of better healthcare for millions of Indians. Of course, there are challenges to overcome, but the potential benefits could outweigh the risks.
India is not just playing catch-up in the field of genomics – it’s gearing up to lead the way. And if India gets this right, it could set a powerful example for other developing countries, particularly in South Asia and Africa, where genomic research is still in its early stages.
What do you think? Can we pull this off? Well, that only time will. But we are surely in for an exciting future ahead!
Book Mandala
In this section, we suggest a book to be read/listened to each week, for the inner policy enthusiast in you :)
Book: Invisible Women: Exposing Data Bias in a World Designed for Men
Author: Caroline Criado Perez
About the Book:
Invisible Women reveals how the gender data gap marginalizes and disadvantages women across all areas of life, from healthcare and education to the workplace and public policy. It presents powerful evidence highlighting the critical need to acknowledge and address this widespread bias.
Our take:
This essential read delves into the glaring gender data gap and how, by neglecting to address it, we perpetuate it. The author highlights how the world operates on a male default, leading to male-biased designs that exclude women. From handset designs to public policies, the widespread failure to account for women’s needs is illustrated with concrete examples.
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