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- [00:02]
A
At ncs, we solve technology problems where others can't challenge us. Search NCS Australia.
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Every parent has the same fiercely held wish for their unborn child, that they're born healthy and continue to thrive. But how far would you go to achieve your goal? And what does it mean to thrive these days anyway? Because there is a growing movement overseas and a controversial genetic test which offers prospective parents the chance to choose embryos that have a probability for all kinds of traits, like being tall or intelligent or ones that lean towards not having certain traits like developing acne or the propensity to become a criminal. I'm Samantha Selinger Morris and you're listening to the Morning Edition from the Age and the Sydney Morning Herald. Today, science reporter Angus Dalton on the Australians wanting to access this technology and the ethical implications of creating designer babies. Hey, Angus, welcome back.
- [01:06]
A
Thanks, Sam. Great to be here.
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B
Well, you have been writing about IVF and the thorny issue of choosing a baby sex. Now tell me, why have you actually decided to write about this now? Because, after all, the practice is banned here unless it's for certain medical reasons. And that's been in place for a long time, right?
- [01:25]
A
Yeah. So last year this sort of came onto my radar because there was a visiting California doctor, an IVF doctor, who runs a sex selection clinic in the US And I spoke to him while I was here and he was speaking to a bunch of prospective parents about offering sex selection, which as you say, is banned in Australia, and basically trying to convince them to go overseas to the US where a lot of this sort of new ish IVF sex selection technology is legal. So people could choose a girl or a boy over there and then come back to Australia and have their happy family. So I just got into it there. I thought it was a really interesting ethical conversation. And what really caught my attention is that basically the ruling document kind of regulating this area is the National Health and Medical Research Council's ethical guidelines for the use of assisted reproductive technology. And there was a line in there where they're justifying their ban of sex selection in Australia, which I found really interesting. And it was basically saying that in the council's view, there has not been enough research in Australia to know what the general public's ethical view of this technology is. So that made me think, okay, if the National Health and Medical Research Council is saying that they don't really know what the public's temperature is on this and that therefore they want more information so they can make guidelines more in line with the public's view Maybe we should start writing about this so people can actually think about it, because maybe this sort of isn't on people's radar unless they're actively undergoing IVF or considering it. And even then it mightn't be on their radar. So I just thought it was worth starting to report on these issues, speak to experts about where they sit on different sides of the fence. And it turns out that people are doing a lot more than just choosing boys and girls.
- [03:15]
B
I mean, let's get into this because as someone who's done IVF like you think I'd be somewhat across it, but this actually blew my mind because you've written about a new controversial test that some Australian IVF parents are actually accessing overseas. And this test essentially attempts to predict an embryo's future. And we're talking about everything from the probability of living a long time, of getting acne, of becoming a criminal. Angus, tell us about this.
- [03:42]
A
I know this is wild, right? So these tests are called polygenic risk scores. And basically these companies in the US have cropped up over the last few years, basically going beyond standard pre implantation genetic testing of embryos, which normally look for diseases just caused by like a single mutation, for example, cystic fibrosis. That's really easy to pick up because you're just looking for one mutation or, you know, a few mutations on a single gene or just broader chromosomal abnormalities which are pretty easy to pick up. This goes a lot further than that. So these companies, basically one of them that I looked at, Nuclear Genomics, will screen up to 20 embryos for 2,000 different diseases and traits, and then supply prospective parents with what looks like a menu, basically laying out all of the different embryos ranked by all of these different traits. So you can literally scroll through this menu on an iPad and it will tell you which embryo has a higher chance of diabetes, what the eye color might be, the chance of it having something like, you know, five more IQ points than another embryo, the risk of getting Alzheimer's and anxiety, and then the next one might be blue eyed rather than green eyed, but have a lower chance of diabetes, but it's also going to be 2 inches smaller and have a higher risk of something like anxiety, for example. So then you're in a scenario where you might have, I don't know, between five or 10 embryos, and you're actually making all these trade offs and trying to choose between embryos based on up to 2000 different traits. I don't know how anyone makes that decision, Sam, but this is sort of what the technology is looking like at the moment. And a lot of experts are very skeptical about the accuracy of these tests, but nevertheless, they're being aggressively marketed in the US there's one company, for example, called Nucleus Genomics, and. And they just papered billboards all over New York saying things like, have a smarter baby. Have your tallest baby, preview your future baby. Have your best baby, that sort of thing. The company calls it genetic optimization, designed to help you choose based on what matters most to you. This genetic reductionism, they really give me ethical pause. They used to say that a child conceived in love has a greater chance of happiness. They don't say that anymore.
- [06:16]
B
And you reported that there was an Australian couple working with another company overseas that they planned to have 10 children. They would test between 60 and 80 embryos. And specifically they said that they would prioritize the embryos that were deemed to have a better chance of good health, but also higher intelligence in the hope that it will make raising and homeschooling their many future children easier. I mean, so people are getting quite specific about, I guess, their desires.
- [06:42]
A
Yeah, 100%. I mean, it's that thing where people are accessing this technology for a whole bunch of different reasons. As you say, this couple who very generously spoke to me, who are undergoing this service legally overseas. So just like sex selection, Australians can legally access the service in certain places overseas. These people in particular want a large family. They want at least 10 kids. They initially were sort of interested in screening for breast cancer risk, which is another one of these standard tests. But then they also wanted to go further and as you. You say, choose embryos that are deemed to be potentially more healthy and, as they told me, more intelligent to make homeschooling easier in the future. So the intelligence thing is really interesting because if you're looking at something like iq, even that as a measure is scientifically contested, let alone whether we have enough of a handle on the genetic data yet to be able to actually predict IQ levels in certain embryos. And the people that they end up being. And these tests, even if they are accurate, which experts say at the moment that they're largely not, would only be able to account for the DNA, and it cannot account for environment. For something like intelligence, at least half of that measure, if not more, is not down to DNA, but down to your upbringing, your nutrition as you grow up, which school that you go to, your home, how much stress that you experience as a child, and what resources you have available to you. Right. So these tests Just can't account for that.
- [08:20]
B
Now, we're going to get into the ethics in just a bit, but first of all, can you just briefly tell us what the guidelines around IVF in Australia are in particular around this issue about determining particular characteristics that an embryo will have. Can you walk us through this a bit?
- [08:35]
A
Yes. So you can do pre implantation genetic testing to screen for diseases that are generally caused by a single mutation or a single gene and would severely affect someone's quality of life. You know, picking up something like cystic fibrosis and the other really important part of the guidelines. And it was a little bit difficult for me to actually find if there was any specific regulation or recommendations about this polygenic risk scoring technology, just because it is so new, I suppose. But I also spoke to the Fertility Society of Australia and New Zealand's Reproductive Technology Accreditation Committee and they're the ones sort of responsible for regulating these new technologies. And they made the point that the guidelines say that accredited IVF doctors and clinics in Australia can only recommend its services that are proven to be clinically effective. And by and large, this polygenic risk scoring of embryos has not been proven clinically. You've got fertility research and scientific committees in the US writing letters saying that they don't support this. Australian based genetics and fertility ethics committees don't support it either. So that's another reason why at the minute in Australia this would not be allowed to be offered. In the US It's a completely different game. It's almost like completely unregulated. So they can do whatever they want there. Which is why it's a bit of a hotspot for these new technologies and has long been a destination for couples seeking sex selection.
- [10:13]
B
After the break.
- [10:14]
A
If we have the technology to have healthier, smarter kids, why the hell wouldn't we use it?
- [10:25]
B
Okay, well, let's talk about the ethical issues in this space. They are numerous and, and they're important because not only as you've written, does this technology, even with its questionable scientific merits, does it lock out regular folk from even considering it. Because the cost can be, you know, US $2,500 per embryo, but there's also a glaring issue in terms of racial equality. So please tell us about that.
- [10:51]
A
Yeah, I mean, this seems to be one of the biggest issues for me. Before we even get to any of the futuristic conversations about like a Gattaca esque society where like the wealthy people are allowed to like design their babies or pick the best embryos and we have this sort of weird sort of class structure before we get to any of that future stuff. This technology which is being offered is based on the genomic data that we have access to. And as of two years ago, about 78% of genomic data is from Europeans and most of that was just from three countries, one of them being the uk. So scientists have basically told me that for a lot of these tests and for a lot of particular traits, it only works for European people, it only works for white people. So you could very easily go to like a population of white people, test all of them, and if they have, if they're of European descent, you could very easily sort out the ones that are a greater genetic risk of heart disease, for example. We couldn't necessarily do that in an African population yet because we don't have the genomic data to draw from. Therefore, these polygenic risk scores, which aren't even all that accurate for European people, are going to be even less accurate for anyone of a non European background at the moment, if you take into account the cost and the fact that it's vastly based on European DNA. This is a technology only accessible to the white and wealthy.
- [12:21]
B
I mean, that's so inherently problematic. And if, if that wasn't enough potential landmines. You also wrote about, of course, there being potential lawsuits from IVF clinics that offer this service because you pointed out in your piece that one IVF provide. Nervous about lawsuits, wondered to the New York Times, what if you chose embryos to be tall, beautiful and smart and they come out short, squat, thick and a little dull? Okay, so there's that. But then there's also the larger concerns of what might happen more broadly in society if people are allowed to create designer babies, right?
- [12:54]
A
Yeah, for sure. I love that quote from the New York Times because it really gets to the key issue about this technology to understand, which is that it is probabilistic. You cannot guarantee, like a taller, smarter child with blonde hair. It's only ever going to be a range of probabilities. Right. The issue for me is the same one with sex selection, or rather this is the issue that experts have spoken to, have relayed to me, which is this concern that if you make decisions about what a child is going to be before it's even implanted and before it's even born, you risk really ramping up, I guess, parental pressure if you have an idea of what your child is going to look like and be like before it even exists. So as an example of this, if you're taking something like autism, for example, if people are then going out and selecting against autism, there are concerns from that community that that further demonizes people living with autism. And also, basically, you're making a judgment call on something that you might necessarily understand. Like, a lot of autistic people do not view their autism as a disorder. They view it as something that falls within the realm of natural cognitive diversity. Right? So then if people start actively selecting against it, is that really something that's better for our society? Maybe not. One of the IVF doctors I spoke to had this great line. His name's Dr. Joseph Scroy in Melbourne. And he said a couple of things are really interesting. He's had patients ask about this technology, his Australian patients ask about it. In his view. He sort of said, we live in this society that's like Instagramifiable, everything's gotta be perfect. And it's also an Uber Eats kind of style world. Like, we want the best and we want it now. And obviously everyone wants the best for their kids. But the whole point in his view of having kids and being alive is embracing diversity and embracing, I guess, the random dice roll of nature. And as soon as you start to mess with that, I don't know, is something special about having kids, is something special about. And fundamental to humanity lost. The counter argument to that, which I also find very compelling, is that if we have the technology to have healthier, smarter kids, why the hell wouldn't we use it? You know? You know what I mean? We know that, for example, people who are smarter tend to have better lives. Obviously, if you have a lower genetic risk of a range of cancers and heart disease, you're going to live longer, and that's a good thing. So parents, absolutely. All of, all of them want the best for their kids. So I can see why people would very much want to use this technology as well. So I see both sides. Like, I was an IVF baby and one of the things that Joseph said that stuck with me was, what if our parents had used this technology? What would their parameters have been? We mightn't be here. I mightn't have been here. You know, if they wanted a girl or if they wanted. I'm 6 foot 7, what if they wanted someone who was of average height? You know what I mean?
- [16:01]
B
I so relate to your point about, you know, would we, would you even make the cut? You know, that you were an IVF baby? Because I just think, well, who would make the cut? It's like our whole gen, all of these generations that exist already, we are all going to pale in comparison to these future babies?
- [16:15]
A
Well, yeah, exactly. Like everyone's got something wrong with them, Right? Like as one of these IVF doctors said, there is no such thing as the perfect baby. And even the companies acknowledge this like they're not. They try and say that what they're offering is not the perfect baby, despite their advertising because there is no such thing. So Sam, there's always going to be trade offs and you and I are just stuck to live with our flaws and our genetic advantages. I suppose so. I absolutely see both sides and I try to stay objective on this issue because there are really compelling arguments on both sides. But these are the sort of things that have stuck with me after writing about this for a while.
- [16:53]
B
Absolutely. And I will say that you did give one counter argument to your last point, which is that, hey, obviously every parent of course is going to want the healthiest child possible. That's just primal, right? So why not use it? But the counterargument I think that you gave in your piece was from a genetic statistician and he said that, you know, it really may worsen the way society treats those with non optimal traits. That's in quotes if you know, we sort of go down this optimization of children route. So tell us what he was saying about that, his point, because it's a profound and somewhat dark one.
- [17:26]
A
Yeah, absolutely. And I'm so glad you brought up this scientist. His name is Dr. Chai Khami from the Hebrew University of Jerusalem and he's actually one of the top guys in the field on this. But to your point, Sam, he basically made this point that researchers by and large looking at this, are quite concerned about this in quote marks optimisation of children, particularly when done commercially under marketing pressure, and that it's probably overall not great for our society. I'll read you this quote that he said. He said it may worsen the way society treats those with non optimal traits. This frequently relates to the 20th century Eugenics movement where a similar way of thinking in quote Marx improving the human gene pool ended up with the atrocities of the Nazis and forced sterilizations in many countries. So this anxiety that we're potentially going somewhere where traits like height, possibly whiteness, intelligence are pre programmed into our children raises some really, really uncomfortable questions even in the researchers that are working directly with this technology. And then I think those concerns are probably amplified by the fact that at the moment this technology is not an equal one either.
- [18:49]
B
Well, it's such a fascinating space, Angus. So as always, what a pleasure to have you on.
- [18:56]
A
Thanks so much for having me, Sam.
- [19:00]
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Today's episode of the Morning Edition was produced by Chi Wong. Our executive producer is Tammy Mills, and our podcasts are overseen by Lisa Mux worthy and Tom McKendrick. If you like our show, follow the Morning Edition and leave a review for us on Apple or Spotify. Thanks for listening.