Should you be able to pick your baby's genetic code?

0:00Coming up, the code for life and the power to pick it. The Sky News Daily examines when genetic screening meets IVF, the new frontier in fertility science.

0:11Tom Clarke:How does a banana trigger a CIA-backed coup? Do AirPods herald the arrival of a new global order? What do LED lights say about the future of humanity? I'm Ed Conway, and in each episode of my new podcast, Stuff Matters, I take an object, crack it open and reveal the world-shaping forces hidden inside. This is economics told through the things we think we understand. Search Stuff Matters on your podcast app to listen and follow. If you could determine your kid's future in advance, would you? Well, there can't be many parents who wouldn't jump at the chance to ensure their unborn child has as long and happy a life as possible.

0:53Certainly, I'm in that number. So perhaps the question is better put as, should you? A company in the United States says it's offering parents undergoing in vitro fertilisation, IVF, the chance to genetically optimise their embryos. They say it's all about reducing the risk from disease, from genetic or chromosomal conditions, but they also allow you the ability to review other things, including height and intelligence. Tom Clark is our science and technology editor. He's back on the podcast. Tom, this story starts, interestingly enough, with an advert on the New York subway.

1:29Tom Clarke:That's right. So earlier this week, ads started appearing on the subway system in New York, offering parents who are choosing or having to have IVF the ability to choose their best baby. These babies have great genes. They were careful to include babies from lots of different ethnic backgrounds in there. But the suggestion that you can choose the height, the intelligence, avoid disease in your baby, I think caused a few raised eyebrows, to say the least. Raised eyebrows, I imagine. And this presumably is a service that comes at a price and a fairly substantial one. So what exactly do you get from this company?

2:00Tom Clarke:They're a New York startup, Nucleus Genomics. And what they're offering is the ability to do a full DNA profile. That's the entire genetic sequence of your fertilized, but as yet to be implanted IVF embryo. And they offer this service for up to 20 embryos so that parents can choose, or in their words, genetically optimize the baby that they choose to proceed with. Some of this is a bit uncontroversial in that it's pretty much standard practice in IVF clinics now for parents who are at risk of an inherited fatal or life-limiting disease to be able to check first before they proceed. In the UK, for example, under the laws we have here that strictly regulate this sort of technology, you are allowed to do that.

2:42Tom Clarke:You're even allowed to select gender if the disease might be one that's linked to the gender of the baby. In the US, there are no such rules. So you can pretty much offer people what you want. And that's what this company are doing. So in terms of avoiding serious inherited diseases, that's something that's already available. But they're going, to a lot of people's minds, one big step further, which is saying we can also select for more common things like heart disease, schizophrenia, even conditions like autism, ADHD. And I think where it takes us into very new territory as well, the suggestion that height, intelligence, eye colour are things that you can get some kind of genetic information for on your unborn baby and then choose which kind of thing you'd like.

3:23Well, let's start with the more acceptable aspect of that, which you've just said. Those diseases, those conditions that can arise from problems with the gene sequence. What are we talking about? What conditions are we referring to?

3:34Tom Clarke:Some of them are very rare. So take Huntington's disease, for example, which is quite a well-known one. That's a fatal condition. Under licence here in the UK, you could select which embryos don't carry both copies of the gene for that that would ensure that they don't go on to develop it. Tay-Sachs disease is quite a common one, more common in places like New York, actually, because it's common in the Ashkenazi Jewish population. So families might, if they've got a family history of it, go and have IVF to ensure they're not passing that one on. The disease genes, I can understand for things like, you know, Huntington's that you mentioned, CF as well, cystic fibrosis is something that can be tested for.

4:08And, you know, plenty of people, you know, listening to this will have had an amniocentesis test for Down syndrome. But it's when it comes to things like for example, height and eye colour, that I think people might start to get a little bit nervous. So people who subscribe to this service from Nucleus Genomic would be able to proceed with a fetus on the basis that they might be a blue-eyed, ridiculously tall basketball player.

4:31Tom Clarke:Certainly from their ad campaign, that seems to be what they're offering. I challenge them on this because the genetics of things like height and eye colour, they're not as simple as inherited diseases like cystic fibrosis or Huntington's disease, they're not caused by one gene. There's a whole array of different genes that play a role in whether an adult is taller or not. So does a lot of environmental circumstances, you know, the nutrition while the embryo is growing in the womb, lifestyle factors when we grow up. And they've got to be very careful and communicate with people. The information you'll get on your embryos will be pretty much just kind of statistical guess.

5:07Tom Clarke:It's what they call a polygenic risk score. It'll just give you a kind of idea of where on a spectrum that particular genetic sequence might lie. In that sense, it is by no means guaranteed. And because these sort of statistical analyses are based on populations of genomes that we've sequenced, like the UK Biobank here, we've sequenced 500 ,000 human genomes, they don't say very much about any one person's individual likelihood of doing it. So a parent might think, oh, look, they've got 70 % score for being taller than average. I'll go for that one. there is no real guarantee that your baby's going to end up being taller than average.

5:42Tom Clarke:And the company running challenge said, yes, of course, they communicate that through genetic counselors, that they're just giving you a kind of statistical probability of what the baby might turn out like. But really, they can't offer any guarantees. And the same goes for common diseases like heart disease and things like that. Because they're common, most of us have quite similar risk scores, according to these genetic tests. About three-fifths of the population will have score that's about the same for something like heart disease. So how useful then is this polygenic screening for conditions that occur across various genes?

6:15Tom Clarke:Not very at the moment is the general view of the kind of human genetics community. The American Society for Reproductive Medicine, they advise against using polygenic risks or scoring of embryos because it doesn't give you very reliable information. But I think it's important to say that information is getting better all the time. We're getting bigger and bigger databases of human genomes. We're including people from many more ethnic backgrounds in there. So one of the limitations is most of these databases are of sort of white middle-class Europeans, and they don't give you a very good overview if you're from a different ethnicity.

6:48Tom Clarke:But they're getting better all the time. And so is the AIs, the algorithms, and the tools they can use to try and see trends in how people turn out in adulthood and what kind of genetics they have in their complicated genome. That takes us very uncomfortably into some very big ethical questions, doesn't it? Because I suppose I look at it this way. Look, you know, every parent, as soon as your child arrives, you love them and you love them unconditionally. Before they arrive, if you were given the opportunity to make sure that they didn't have any genetic conditions, that they perhaps had advantages through height or intelligence or so on, you know, I think all of us would have to think very, very seriously about whether or not we wouldn't want to go through with something like that.

7:30Tom Clarke:We would, but we'd also have to do that with the right kind of understanding and knowledge of what we understand about genetics and what that might mean. Firstly, as things currently stand, there's no guarantee that the outcome would be what you chose. The second thing is we don't know what some of the other variabilities in your genome might be doing. We have varied, complicated genomes for a reason. We've had millions of years of evolution to get to that point. If we start selecting, oh, I want the lowest risk of autism spectrum disorder in my family, we know there's a lot of overlap between some of those mutations and things like intelligence, for example.

8:06Tom Clarke:So you're kind of starting to tinker around here. I think the vision from Silicon Valley, and this company very much represents that, is this idea that more information is better. We can effectively code for healthier, longer lived children. There are positives for that. You know, that would mean less costs for healthcare. It would mean people spending the last few decades of their life chronically ill. Sure, there are potential advantages. Explain the fascinating and perhaps actually pretty worrying connection that this technology has with the Silicon Valley tech bros, people like Elon Musk and Peter Thiel.

8:39Tom Clarke:Peter Thiel, one of the titans of Silicon Valley, PayPal, Palantir founder, who's gone on to have billions and now uses a lot of that money to back other companies through venture capital. Elon Musk, who reportedly has 14 children at least, is very much an advocate of this idea that the human population is shrinking. And if we don't breed more, humanity is going to disappear. But this idea of pronatalism, that we need to breed more and the sense I get from a lot of discussions, more and better humans as well. They're very interested in longevity. Peter Thiel and lots of other Silicon Valley billionaires are investing heavily in the science, the genetics of longer life.

9:18Tom Clarke:But now we're also seeing an interest in these sorts of genetic selection ideas. The founder of Nucleus Genomics, 25-year-old Kian Sardegi, he was one of Peter Thiel's graduates from his Sounders program. He got funding for the thing from Peter Thiel as well. So we know there's some of these established connections between the Silicon Valley wealthy and these sorts of companies. And yeah, if you extend that forward, it does have slightly scary overtones. a super wealthy elite that's interested in pursuing genetic selection of babies and offering that to other people. And you don't have to spend too long worrying about dystopian science fiction to think about some kind of super intelligent, super breed of Silicon Valley offspring.

9:59Tom Clarke:It's kind of ghastly when you think about it. This is clearly not going to be the last time you and I talk about designer babies. It is a discussion that frankly has been happening since the human genome was mapped all the way back in 2003. But we should say right now, the legal landscape in the United Kingdom means this sort of stuff isn't coming here anytime soon. That's absolutely right. So in the UK, IVF is regulated and pre-implantation genetic diagnosis, the step you have to do to take one of the cells from an IVF embryo and sequence its genome, that has to be done under licence and only when it's medically relevant.

10:33Tom Clarke:In the case of the UK, each individual condition has to have a licence and it's very strictly controlled and it can only be allowed for essentially fatal or life-limiting, life-threatening inherited disorders. Similar rules exist in most European countries and in lots of other places around the world. But there are a few countries with exceptions to that, the United States being one of them. There are no federal or state rules on what an IVF clinic can or can't do in terms of testing embryos. Tom, I'll admit I'm confused. On the one hand, I'm from a family of scientists, anything that resembles eugenics I'm going to be running away from.

11:06At the same time, you know, what parent out there wouldn't have to think long and hard about doing something like this and giving their child the best possible chance of a long and healthy life?

11:17Tom Clarke:Think about the controversy that there was around IVF when it came out. It was seen by many as abhorrent and just not something that medical science should involve itself with at all, that unless pregnancy occurred naturally, it shouldn't happen at all. And it's now pretty much universally accepted as a perfectly ethically sound thing to do. And let's not forget some of these techniques of testing embryos have spared thousands of parents around the world the prospect of passing on a serious condition to their children. And if you think about it, by removing that gene from the baby, they're preventing that from being passed on to future generations as well.

11:50Tom Clarke:So there's a huge sort of ethical plus on that side. Let's just focus on disease. It surely would be a good thing if with certainty you could test embryos for their risk of heart disease or more common conditions. That would be a nice thing to do. But let's not forget, is that ever something that's going to be clinically applicable to everybody? IVF is expensive. It is not for everybody. Getting beyond disease, though, that's territory I don't feel we're quite ready for because it opens up a whole host of issues. not least, I think it's fair to say we do not know enough about the genetics of intelligence.

12:24Tom Clarke:Even ICAR isn't as simply inherited as people would say. So do we actually have a choice? And then if we do, is that really a choice that society is going to want to make, especially as it might have seriously unintended consequences? Not just from a genetic point of view, what are you actually selecting for? Because you might be screening out helpful, healthy genes when you focus on one condition and ignoring all others or one trait, but also this idea that we have an elite that has choice over their offspring and the rest of us that don't. Thanks, Tom. His full report is available to watch over on the website, skynews.com.

13:00The Daily's back again tomorrow.

13:05Tom Clarke:How does a banana trigger a CIA-backed coup? Do AirPods herald the arrival of a new global order? What do LED lights say about the future of humanity? I'm Ed Conway, and in each episode of my new podcast, Stuff Matters, I take an object, crack it open, and reveal the world-shaping forces hidden inside. This is economics told through the things we think we understand. Search Stuff Matters on your podcast app to listen and follow.