The dawn of the designer baby

14:16Jenny Kleeman:She had a company called the Los Angeles Project, which sought to biohack pets. So making glow-in-the-dark bunnies.

14:25Cathy Tie:Why would you want a glow-in-the-dark bunny so you didn't lose them in the dark?

14:28Jenny Kleeman:Well, I guess if you're a Los Angeles pet owner who has everything, why not have a glow-in-the-dark phosphorescent bunny? Phosphorescent bunny rabbits. She said she was interested in using genetic engineering to turn horses into unicorns, get them to grow own nice big horn. Also other things, slightly more practical, hypoallergenic cats. It sounded like a fun project. I don't know how far she got with it because when I asked her, she wouldn't tell me. She clearly thought it was a lot of fun. She said it was a useful way of understanding genetic engineering, which is what she'd always wanted to do.

15:08Jenny Kleeman:And then I thought, oh yeah, obviously you would try this out on animals first because there aren't the restrictions on animals that there are on human beings. And when I asked her this, when I put that to her, she said, I'm not familiar with what the animal consent process is. And I said, surely there is no animal consent process because animals can't consent to being experimented on. And then she said, yes, I'd rather we didn't talk about this. I don't remember exactly what was going on with that company.

15:34Cathy Tie:Yeah. And after that project, what did she do next? She went to China.

15:39Jenny Kleeman:That's where she met up with Hezhen Kwe, who she had interviewed before. There's a very strange video on Cathy's YouTube channel of her interviewing him.

15:46Cathy Tie:That's great. Thank you. Yeah, just, you know, informally, as an individual outside of science, what do you like to do in your free time? What are your hobbies and what are you passionate about? Well, I love playing golf. I also enjoy...

16:04Jenny Kleeman:She got together with him. I think he told her he was in love with her and it was a bit of a surprise for her. but then she fell in love with him. They got married. She told me they weren't legally married, but there was certainly a wedding. There were wedding photographs all over both of their social media. They had matching wedding bands, custom made that were DNA double helixes. Of course. Of course. She was living in Los Angeles at the time. She went back to the US to pack up all of her stuff. Everything was in storage. Everything was going to be shipped over to Beijing. But then the Chinese government got in the way.

16:38Jenny Kleeman:And she was visibly squirming when I was asking her about him. She looked so uncomfortable. She was going red in the face. I asked her if the only reason why their marriage didn't survive was because they couldn't be together for logistical reasons. And she said yes. So I think if she could have moved to China, she would have. She was really in admiration of him. She saw him as a heretic, you know, someone who is a Teal fellow who has been incubated in a culture of, you know, healthy disrespect for authorities, great for science, is great for the world. Someone like him who would break the rules and create the world's first gene edited babies.

17:17Jenny Kleeman:It sounds very appealing. But when you know the details of what he actually did, and I think most people don't know and don't ask many questions, he's actually a very, very dubious figure. Okay.

17:29Cathy Tie:And can you actually just break down for us exactly what he did?

17:32Jenny Kleeman:This all came to light in 2018 when he gave a presentation about his experiment and he called it an experiment, which was the creation of twin girls, Lulu and Nana, who will be, I think, around nine years old now. So Lulu and Nana's father was HIV positive. And what He Jun Kuei did was he tried to introduce what is a naturally occurring genetic mutation that gives people natural immunity to HIV. This protein is responsible for lots of other stuff as well, not just immunity to HIV. We don't know what the consequences of that would be. So he tried to do this in these two embryos, and he failed. According to his own data, he failed.

18:18Jenny Kleeman:So he caused unknown changes in both of the embryos and he knew this. And yet he still allowed both embryos to be implanted into Lulu and Nana's mother and for Lulu and Nana to be born. What most people understand is he gave these twins immunity to HIV, but he didn't. And also this was not a disease like Huntington's. they weren't carriers of a genetic abnormality that needed to be created he was giving them or trying to give them um a protection against a disease that they might contract because they were living sharing a household with someone who is hiv positive so this is not a necessary life-saving procedure by any stretch of the imagination you can see why he was nicknamed

19:08Cathy Tie:China's Dr Frankenstein, can't you?

19:10Jenny Kleeman:Yeah, I mean, he was, you know, really experimenting with human life, suturing together different bits of genetic code and hoping for the best. Even when he knew that what he had tried to do had failed, he still wanted to see the outcome. And nobody knows what's happened to them. There's a lot of secrecy about it. He hasn't published any information. The Chinese government doesn't want people to know. So the fate of Lulu and Nana is a complete mystery.

19:47Cathy Tie:In terms of what Cathy is wanting to do with her new venture, how does it differ from what her ex-husband, estranged husband was doing?

19:57Jenny Kleeman:Cathy is seeking to target monogenic conditions, so conditions where there is one gene that you can target and change. and for those changes to be made very early on so that the growing embryo does not have this condition and the baby doesn't have it. And that's different from what Hezhenkwe was doing. But there are other ways of achieving the same ends. We can do embryo selection where we screen embryos created in IVF to see which embryos are the carriers of a genetic condition and implant only the ones that aren't the carriers of a condition. Or we can do gene therapy where you deliver a therapy after a person's born.

20:37Jenny Kleeman:And the difference between gene therapy and germline gene correction, which is what Kathy wants to do, when you do gene editing of sperm or of embryos, the changes you make are present in all the cells of the body, including the reproductive cells. So it means that that person and all that person's descendants will have the changes that you make. Gene therapies are very expensive. You have to have a procedure where the medicine is delivered to you. And sometimes that can be painful and sometimes it can take a long time, but not always. I wrote a book, one of the chapters looked at the most expensive medicine in the world, which is a gene therapy for spinal muscular atrophy, where it was at the time that I wrote it.

21:19Jenny Kleeman:And spinal muscular atrophy used to be the most common genetic cause of disease for children under two. So it's quite a common disease. And I know that SMA, the gene therapy for SMA, which is called Zolgensma. It costs$2 million a dose, but it is delivered within a few hours. We were having this conversation and Kathy was saying that gene therapy is really bad. It's really expensive and you have to have chemotherapy. She was talking about this gene therapy for sickle cell. And I said, well, not all gene therapies are like this. For example, Zolgensma, it only takes a few hours to deliver. And she said to me, I'm not familiar with that treatment.

21:58Jenny Kleeman:And the idea of somebody who is specialising in this area not knowing about SMA, which is an incredibly common disease, and not knowing about Zolgensma, which made headlines around the world, is quite astonishing. So she is either very poorly informed or she's not telling the truth when she says that. It's in her interest to spin this idea that all existing treatments are really flawed and that the only real answer to stopping children from suffering is to edit the genes of embryos. Has Kathy got a sense of how much her treatment is going to cost? She has no idea how much it will cost. I heard her on a podcast saying that it would cost about $20 ,000, which is the same price as IVF in the US.

22:39Jenny Kleeman:I put this to her and she basically told me she just made that up on the spot in that podcast. Nonetheless, I know that in America, people are prepared to spend a lot of money on reproductive technology. One of the things that I have found, as somebody who's reported a lot on reproductive technology over the past few years, is the normalisation of pre-implantation genetic testing for things like height, for things like not just gender, but things like intelligence. In America, it's perfectly allowed for you to have your embryos screened and tested so that you implant the ones that are most likely to be healthy and tall or have a particular eye colour.

23:21Jenny Kleeman:That is legal, that is normal, but it's also very expensive. It's seen as a sort of enhanced form of IVF. It's increasingly an option for wealthy Americans.

23:31Cathy Tie:I'm listening to this as somebody who has undergone IVF, which is essentially what any couples who are wanting to do this would have to go through. and when you have a round of IVF every single egg every embryo is so precious I didn't have any kind of pre-genetic screening I didn't need to but the thought of having to discard these precious embryos I think would have been very painful so is that I mean is that one of the advantages that Cathy is selling?

23:58Jenny Kleeman:Absolutely I mean Cathy's big thing is that pre-implantation genetic testing involves throwing out the embryos that do carry the genes that you're seeking not to have in the next generation. And some people don't produce enough embryos. And for some people, every embryo will be affected. Each one of those embryos is incredibly precious. And this gives every embryo a chance. It's an extremely emotive, very powerful and legitimate argument for this. when I went to this Harvard debate where she was speaking at, there were people in the audience who are carriers of diseases where all of their offspring will have this condition.

24:42Jenny Kleeman:So it's a choice between being a parent or not being a parent, this technology.

24:46Cathy Tie:Families should have the choice. It's about the choice of having the option to correct the genome of their children. And if that's something they want to get rid of in their family, they should have the option to do something. No one's coercing them. But taking that option away when the technology could be ready for them. I think that is a form of coercion on its own, and it's pretty unethical.

25:07Jenny Kleeman:Cathy is insistent that she is, at the moment, only looking to stop severe monogenic diseases. So that means things that are dictated by one gene. And things like intelligence and height are polygenic. There's many different genes that come into play there. So she says the technology is too difficult for that. The thing that really fascinates me, though, is if she says she's only looking to stop severe monogenic diseases, she thinks the word severe should be defined by parents, not doctors, because she says, why should doctors and ethicists get to decide what is serious enough to use this technology?

25:49Jenny Kleeman:And you can imagine, not now, but in a time in the future, let's say that you have gene editing to be used to correct Huntington's disease or sickle cell anemia, that you could have down the line people saying, well, I don't want my kids to have osteoporosis. I want them to have stronger bones, or I don't want my kids to have heart disease. I don't want them to have high cholesterol. And, you know, that that could be classed as severe. And what about a world in which, you know, the genetic lottery of not being an intelligent person in an increasingly high stakes competitive world, that could be seen as a really unfair defect.

26:22Jenny Kleeman:If severity of a condition is defined by the parents, you know, you could take that almost anywhere.

26:30Cathy Tie:Yeah. And how does Cathy defend herself and her method against these criticisms, the ethics, this argument that it's a slippery slope?

26:38Jenny Kleeman:She says it's not her problem. She says it's up to regulators and governments to decide where to stop, where to put the guardrails. Her job is to show that the science is safe and efficacious, and that's what she's trying to do. But the rest of it, it's up to democratically elected governments to decide where to draw the line, not her.

27:03Coming up, is it only a matter of time

27:05Cathy Tie:before these genetically edited babies enrol at a nursery near you?

27:25And how far do you think that this enhancement technology could go?

27:30Jenny Kleeman:It's limited only by our understanding of genetics. And I think maybe 20, 30 years ago, we thought, oh, we'll find a gene for this, a gene for that. And we'll be able to, you know, work out what the gene for curly hair is or, you know, and we'd just be able to tweak this and tweak that and change it. And we're learning now that there is a big interplay between different kinds of genes and there is epigenetics where you have a gene, but it's not expressed in the same way. Things are slightly more complicated. But ultimately, if we understand which genes are responsible for which traits down the line, anything might be possible.

28:07Jenny Kleeman:It's limited only by our understanding of how the genetic code that we have in our cells ends up being expressed in our bodies.

28:15Cathy Tie:And you said that she kept on saying that this technology is inevitable. Is it, do you think?

28:23Jenny Kleeman:It's as inevitable as we allow it to be. She said to use the word inevitable 12 times during our conversation in her office. I feel like there is a tide that is turning in the US, having seen the tone and the mood of this debate with this ethicist, having walked around New York and seen the advertising for pre-implantation genetic testing with a slogan for this company is have your best baby this idea that you know just a healthy baby not just a healthy your best baby and i've looked at a lot of technologies where the argument for it is we're helping children do you want little children to suffer and there are very few people who will say yes of course We're happy for little children to suffer in order to maintain this arbitrary ethical boundary.

29:14Jenny Kleeman:You do need to be flexible when you're looking at these things. But the thing about Cathy is her association with He Jun Kuei does tarnish this somewhat. Because He Jun Kuei has tweeted at length about how inevitable it will be to do genetic engineering for intelligence, for enhancement, as opposed to just medicine. And if she is doing this, if her objective is really just to help the sickest, most vulnerable individuals on this planet, why did she have this close association with this man? And why isn't she prepared to completely disown everything that he did? And so I do feel like we are moving closer to a world where gene editing of embryos is going to happen.

30:01Jenny Kleeman:But it concerns me greatly that this American model of the way to make this happen is through genetic engineering startups rather than through proper scientific research. And I understand why there isn't this scientific research is because there's a moratorium on that research. But it would be really worrying if a consequence of that moratorium is you've got Sam Altman and Kathy Tai driving it.

30:25Cathy Tie:Yeah, I was going to say, Sam Altman, this discussion really reminds me of the discussion around AI right now. It's inevitable.

30:33Jenny Kleeman:It's exactly the same thing. It's exactly the same discourse of this is definitely going to happen. So we might as well have good people driving it or we might as well have me driving it because I know what I'm doing. I know. Do I want to? Is she a good person? Well, it's exactly the same thing with AI and China. We can't have any regulation on AI because otherwise China is going to beat us. We can't have any regulation on genetic engineering of embryos, otherwise China is going to get there first. And there is a sense that China is moving forward, even though it was the Chinese authorities that put He Jiankui in prison after he broke the rules.

31:08Jenny Kleeman:There is that argument. But there's a point in which we have to step back and say, just because we think other people might be doing it? Is this a reason for us to race to the bottom of doing it? And we should be able to have a mature conversation about this without saying, we've got to hurry up and do this first. Otherwise, you know, we're going to be left behind and this is inevitable, it's going to happen anyway. So we must make sure we're at the front of it.

31:34Cathy Tie:Fascinating and terrifying in equal measure. Jenny, thank you very much.

31:38Jenny Kleeman:Thank you so much.

31:41Cathy Tie:That was Jenny Kleeman. You can read her interview with Kathy at theguardian.com. And that is all for today. This episode was produced by Casey McClure and Tom Glasser and presented by me, Helen Pidd. Sound design was by Ross Burns and the executive producer was Eli Block. We'll be back in your feeds this afternoon with the latest.

32:03Jenny Kleeman:This is The Guardian.