Former British PM Describes How Personal Tragedy Inspired Genomics Project for Rare Disease Research

BIOtech Now
BIOtechNOW Editor

At the 2017 BIO International Convention last month in San Diego, former British Prime Minister David Cameron opened up about the loss of his firstborn child, Ivan, to a rare brain disorder and how it inspired him to launch the 100,000 Genomes Project in the United Kingdom.

The project will sequence 100,000 patient genomes as part of a national effort to improve personalized medicine and create better treatments for rare diseases.

BIO CEO JIM GREENWOOD:  No matter how much pressure you endured in office, it was always said that you were a fabulous family man, a great husband and a great father. You and Samantha had four children. Was it two boys and two girls?

DAVID CAMERON: That’s right.

GREENWOOD: Ivan had an unusual disease and didn’t survive it, so could you talk to us about how that affected you and to what extent did it actually affect your thinking about policy?

CAMERON: Well it had a huge effect on us. I mean, imagine: We didn’t have children for five years. We waited and then your first child, you’re so excited, and then Ivan was born and pretty soon we found out that he had a condition called Ohtahara Syndrome. [It’s] incredibly rare, and like many of these syndromes, it’s really just a description of some symptoms: unbelievably bad epilepsy – I mean, sometimes he would have 20 to 30 seizures a day. Sometimes, they could last up to an hour. He was quadriplegic. He couldn’t really move his arms or his legs. He couldn’t communicate, but he had a wonderful smile and we loved him. There isn’t a day that goes by that I don’t miss him.

But he did have a big influence in teaching us about that whole world of special schools and assessments and hospitals and tests and all of that. I found out more about that world, but I think it also – for the purposes of this conference and the biotech industry –had a big influence on my thinking about discovery and the life sciences.

This was back in the early 2000s when you had genetic counseling about whether this would happen again [if you had more children]. It was in its infancy. You’re basically told, “Well, it might be genetic, in which case maybe a one in four chance. Or it might not be genetic, in which case one in several hundred thousand chance. So we’ll give you a blended probability of one in 20.”

Now, I remember how few of my father’s 20-to-1 shots ever came home. Luckily, we decided to go on and have more children, and they’re all happy and healthy. But it did make me think [that] there’s so much more we could do to help progress in genetics, genomics and drug discovery and [further] understanding of these things.

That was one of the reasons why, as Prime Minister, I commissioned the 100,000 Genomes Project and had the first sequenced genome on my desk. I felt that partly because of the amazing scientific work that was done – Watson and Crick, Sanger, and all of the work that you’ve been doing here in California – we were discovering so much more. But I thought there was also a unique chance in Britain, because we could combine a databank of genomes together with our National Health Service (NHS). So if we took genomes of 100,000 people who had rare conditions or [who had] relatives who had rare conditions, then you could test the outcomes against what was happening in the NHS, which has got its disadvantages of being one national system but has its advantages in that you’ve got an enormous amount of usable data.

I thought we could really do some great stuff, so that’s where the project came from. As Prime Minister, I always tried to boost the life sciences area because I thought it was a key area of economic growth but also on the cusp on so many exciting discoveries about genetics and genomics – and about what works and what doesn’t.

I suppose the connection to Ivan was [that] when Ivan was born, I thought we knew much more than we did. When you hear the description of a disease or condition, you think, “Well, surely we know what causes it, what the symptoms are and how we treat them.” And the truth is, that’s not the case, obviously. That was naïve of me and I recognize that now. We put labels on things without really understanding the causes. And I think your industry [offers] an amazing opportunity to discover what really does cause these things. And that’s why I am very glad to be here today to talk about it.

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