‘India should be a model for genetic research’

On April 25, 2003, a group of geneticists representing six countries announced that it had mapped every one of the three billion letters making up the human genome. What had taken scientists of the Human Genome Project 13 years and $3 billion to achieve can be done today for $3,000. With thousands of human genomes now sequenced, one of the principal leaders of the Human Genome Project, Eric S. Lander , says that in just five years the world could have “a complete catalogue for most of the important diseases.”

In an interview with Divya Gandhi in New Delhi, where he delivered the first of a three-city Cell Press-TNQ Distinguished Lectureship Series, Professor Lander, President and Founding Director of the Broad Institute of the Massachusetts Institute of Technology and Harvard University, cautions against the “hype” around genomic research but also explores the promises it has shown in targeting cancer, heart disease and schizophrenia. Excerpts:

In which areas of medicine are genomic revolutions most imminent?

Cancer leads the way because cancer is a disease of the genome. Hundreds of drugs are making progress against genomic targets, and dozens have been approved already for use in humans. Drugs against melanoma, for instance, are directed against mutations in the BRAF gene.

But there is important work going on in diabetes, in early heart attacks. And for the first time it has become possible to find genes that play a role in the causation of schizophrenia. That is a big deal because schizophrenia has been a black box for a very long time. To try to figure out how to treat a disease where you don’t know what is wrong is like trying to fix a car if you can’t actually pop the bonnet.

How big a setback to genetic research has the cut in U.S. biomedical funding been?

The budget for the National Institutes for Health (NIH) has fallen by 25 per cent [over the past decade] in inflation-adjusted terms. We just got unimaginably good opportunities compared to previous generations. We have got amazing young people coming into the field just at a time when we are cutting funding.

On the human genome project there was a report that said that of the $3 billion spent, the return has been more than 100 to one. It gave rise to more than hundredfold more activity, more economic return.

A single company that has developed a cure for cystic fibrosis has a market capital of $28 billion, nine times more than the entire human genome project.

Indian science allocation has not been growing either…

It has been falling. It is 0.8 per cent of the GDP, while in the U.S. it is about 2.8 per cent of GDP. In China it is 1.8 per cent. That is twice as much as a percentage of GDP. If you look at medical research, the amount of money that the U.S. spends on NIH is $31 billion. If we adjust that on a GDP basis, India should to be spending $3 billion. In fact what India is spending is $1 billion. If India has to be leading country in science and technology it should aspire to those ratios.

But it is important to say that it is not all about money. You need great scientists; you need to give them their autonomy. Science should be directed by scientists and scientific priorities. It has never really worked for the political branch to pick and choose projects.

This country trains extraordinary scientists and we in the U.S. get the benefit of them. Your brain drain is our brain gain.

Where does India feature in the global scientific consortia of genomic research?

India is certainly active. But is India doing as much as it should be doing? No. India is perhaps the single most interesting country to study. There is tremendous diversity across India. You have a country of over a billion people with so many different ethnic groups; endogamous groups with people tending to marry within particular groups; and parts of India with consanguinity marriages with relatives. You have amazing genetic variation — more than any other country perhaps in the world. And there is so much that can be learnt from that.

The excellent science that is going on is only a fraction of what could go on. India should be one of the models in studying genetic variation and how it relates to disease. So, I would be in favour of seeing much greater activity in genomic medicine in India. That has been limited by budgets. It is also limited by regulations over sharing DNA out of the country. It is certainly a very big obstacle for international collaboration.

I respect the importance that people place on the integrity of the DNA but I think there are good ways to respect that. There are consents and ways to make sure that information and samples are not misused.

Are concerns over patient privacy valid?

Yes, genetic information could be misused. But we in America have laws to prevent that. I feel very strongly about patient autonomy, patient privacy. The access must be restricted to scientific use and the patient will sign a consent that says you may use it for these purposes.

But within that we can make a lot more progress by asking patients if they are willing to share within that context. Patients have the right to share their data if they want to. My experience is that patients — say, patients with cancer — they want to see something good come out of their experience. They like to be altruistic. The way to protect it from misuse [say, by their employers] is by laws.

You had warned against the “hype” around the genome project and continue to refute the idea that a genomic cure for all diseases is round the corner.

When the human genome got sequenced, there was a lot of delusional hype about how rapidly things would happen. Medical revolutions happen over the course of decades. I wish they could happen over the course of months. They just don’t.

I don’t think we should overpromise that people are going to see cancer cured in a few years. But if you ask me “what will cancer look like 25 years from now?” I think it will be radically different. I think we will have treatments that are far more effective, that can be combined in different ways, where we begin to see people with cancers — that today will be fatal — living near normal lifespans.

Our children will have the benefits of that and their children will have more. If you talk of venture capital investment, the right scale would be years. But in social investment the right scale is: “what will it do for the next generation?” I have no apologies for things that play out over the course of a generation.

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Printable version | Oct 14, 2021 3:08:59 PM |

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