This appeared last week:
How to make a superbaby
Helena de Bertodano
2:30PM July 19, 2024.
Although Noor Siddiqui and her husband have no fertility problems, she has undergone IVF so that she can freeze her embryos. Then, using the technology of her own startup company, Orchid, she is pre-screening each embryo for any potential health problems.
Siddiqui, 29, does not have children yet, nor is she even pregnant, but she knows a lot about her future family. She will have two sons and two daughters and, like any parent, she wants them all to be healthy. Unlike most parents, however, she is almost guaranteed to get what she wants.
We are not talking about simply screening for major birth defects or conditions such as Down’s syndrome – we are talking a full-scale analysis of each embryo’s predisposition to all the 1,200-plus diseases and conditions about which we currently have genetic information, including a wide range of cancers, diabetes, coronary artery disease and even Alzheimer’s. Based on the results, prospective parents can decide which embryos to implant. Testing costs $US2500 ($3700) per embryo, on top of the cost of IVF, leading to concerns that the rich will breed “superbabies” (although Orchid is also planning a select philanthropy program).
The difference between the Orchid testing – which is already available in dozens of clinics across the US – and what Siddiqui refers to as “the old testing” is off the charts. She suggests you think of it “like a book”. “The old testing is only looking at the table of contents, [whereas Orchid] is spellchecking the entire book. So if your genome is 3 billion letters, Orchid is looking at all of them.”
“Look,” Siddiqui adds, pointing to a graph she has pulled up on her iPhone that shows the analysis of one of her embryos. “All these genes that cause horrible diseases are negative. Same for hereditary cancer.” She flicks to another one and I see a solid red line. What’s that? “This embryo was in the 99th percentile for breast cancer. So it has a 37 per cent lifetime risk versus this embryo, which has an 18 per cent lifetime risk.”
She splits the screen so she can compare embryo three – the one with the heightened risk – with embryo five, which shows no heightened risk factor for any disease. So, I say, you would clearly choose embryo five over three. “You can choose whatever embryo you want,” says Siddiqui, who is hypersensitive to any suggestion that Orchid’s services have any similarity to eugenics. But embryo three would be an unusual choice, wouldn’t it? “Sure,” she concedes. “But embryo three knows at age zero to screen early for cancer.”
We are chatting in the San Francisco apartment of Masha Bucher, a Russian friend of Siddiqui’s and an investor in Orchid who plans to use the service herself. Aged 34, Bucher is married but says she is not ready for a child right now. Dynamic and bossy, she explains why she supports Siddiqui: “We have access to data on so many less important things. I’ve been calculating my calories since I was ten years old, I track how much time I sleep, I have financial apps. Why wouldn’t I use something that helps with such a major decision over the health and future of [my child]?”
In their friend circle, freezing eggs or embryos is the norm. “Many who are younger than me are already doing egg freezing or embryo banking with their partners,” Siddiqui says. “They get engaged and they make embryos and they plan to have kids in ten years, whatever.”
So far, Siddiqui has frozen 16 embryos. “Unfortunately, almost all are girls.” Just two are boys – and one of them is at a heightened risk for prostate cancer. Not that that in itself is a deal-breaker. “But if you want to have two boys, then you should probably have more than two embryos. Basically, each embryo has a 70 per chance of becoming a baby.”
So she is going to freeze more eggs in September. Yes, she says, IVF is uncomfortable. “But it’s really not an ordeal. Women do waxing, Botox, laser hair removal – and it’s completely frivolous. Who cares whether you have hair or not? I care way more if my baby is going to get cancer. I care way more if my child will go blind in college. So why wouldn’t I spend an extra two weeks and a couple of thousand dollars to make sure my child doesn’t suffer? That should not be stigmatised.”
Pretty and slight, Siddiqui seems to be one of those intellectually brilliant people who, on a practical level, is a complete disaster. I rarely feel like the grown-up in any situation that involves organisation, but after a chaotic day with Siddiqui I almost feel like a babysitter. The location and time of the interview change so often I lose track; patients and doctors whom she has lined up to speak to me suddenly evaporate. She doesn’t know which apartment Bucher lives in so we end up knocking on random doors while she tries to contact someone 8000km away who might have the address – except her phone battery dies and she doesn’t have a charger. At one particularly low point in the day I find myself stuck in a fire escape stairwell with her, unable to re-enter the main building because the door has locked behind us.
The day starts smoothly enough, albeit well behind schedule. Siddiqui offers to collect me from my hotel; a white Jaguar pulls up and I get into the back seat next to her. We begin chatting and as the car pulls out into busy traffic, I suddenly realise there is no driver. The car is driving itself. “I hate driving,” she says. “It’s so annoying.” So, being a young San Franciscan, naturally she uses Waymo, the self-driving car app that is rapidly supplanting Uber. “It feels super-futuristic when you first jump in, but then you forget about it,” she says.
It is pouring with rain and I ask her if – with all her technological know-how – there might be a way to stop it. Actually, she says, there might be. She knows someone who has a company called Rainmaker. “I don’t know if they can stop the rain, but they can start it.”
The daughter of Pakistani immigrants, both engineers, Siddiqui grew up in Virginia, where discussions around the dinner table were highly intellectual. “My family loves to debate. My older sister and my dad would spar about any topic: political, technical, nuclear power… I would try to insert myself and then, when I went to school, I’d sound so smart because I would just repeat the conversation.”
The one cloud on the family horizon was her mother’s worsening vision. She had been diagnosed with retinitis pigmentosa, and Siddiqui says that watching her mother struggle with the disease triggered her fascination with genetics. “Just think about it – someone you love, their independence is getting ripped away from them. It just struck me as incredibly unfair.”
As a teenager, she applied to the Thiel Fellowship, a program that funds 20 gifted young people a year to work on their ideas, deferring college. She won a place and founded a startup called Remedy, using Google’s augmented reality glasses to help healthcare providers care for patients. Later she attended Stanford, graduating with a master’s degree in computer science. By then she had met her future husband, Feross Aboukhadijeh, a fellow student. He is now the founder and CEO of Socket, a security platform, and seen as one of the most brilliant brains in Silicon Valley.
After eight years of dating, they married in a “giant, crazy” three-day wedding in Hawaii in 2022. “It took me way too long to decide to marry.” She was determined to be the one to propose first. “I told him I wasn’t going to accept any inbound [proposal]; I had to ask first.” So, not one to do anything by halves, she organised a flashmob proposal (it’s a thing these days, especially in California), flying in friends and family from around the country and contracting artists to perform his favourite music. He said yes, of course, and then organised his own return proposal with a scavenger hunt. They now live in San Francisco and plan to start a family in the next couple of years.
Using her own relationship as an example, Siddiqui robustly contests the argument that the IVF/freezing embryos route lacks romance. “Think of how much love and energy it takes to say we’re going to plan ahead to make sure this child is healthy,” she says. “This is the biggest gift I could give my child.”
And, she maintains, it is still a magical process. “Of the millions of eggs that existed in me when I was a baby, I capture 20 of them. Think about how miraculous that is. My husband has billions of sperm and it’s these specific magical combinations of literally trillions [of options] that get to be our kids… And we haven’t gotten pregnant yet. The first embryo might not take. So there’s still a lot of mystery.”
Of course, for couples who take the Orchid route to have a baby, sex in itself is unnecessary. “Sex is for fun,” is one of the lines that Orchid uses. “Embryo screening is for babies.”
“It’s a little tongue in cheek,” Siddiqui says. “But that’s what I personally think. You’re taking more risks [having a baby through sex].”
As for finding out about potential problems post-conception, the emotional toll is high. “The current process is much worse: once the pregnancy is already in progress, you can get a very small amount of genetic information and find out about a very small list of those thousands of diseases. And then you have a very tough choice to make: you can either terminate or continue that pregnancy. I would way rather have the information before I’m pregnant.”
I tell her that when I was pregnant with my second son in the US, I had an ultrasound that showed he might have Trisomy 18, also known as Edwards Syndrome, a chromosomal condition that affects the heart and lungs and is so severe that most children do not live beyond the first two weeks of life and fewer than 10 per cent beyond the first year. At the local hospital I was asked if, given the risks, I wanted to continue with the pregnancy. They offered me counselling and made it sound almost a certainty that he would be born with the condition (even though there was a much higher chance that he would be born without it).
Twenty-one years have passed since then. Obviously, if I had terminated the pregnancy I wouldn’t have my healthy, kind, beautiful son Joe. Or if I’d had the choice of several embryos, it’s unlikely I would have chosen one with an elevated risk of such a condition.
“But you’d have a different son,” Siddiqui says cheerfully, “whom you’d also love.”
She has the same answer to the suggestion that her mother might not have been born if her grandmother had been given a choice of embryos and saw that she had a heightened risk of blindness. “I’d have a different mother.” Clearly, Siddiqui herself would not exist either, but she thinks I am far too stuck on people who wouldn’t have been born. “People are always thinking about [one] person who wouldn’t exist. You immediately say, ‘I wouldn’t have my son.’ But what about all these future people who wouldn’t exist if you don’t use this technology?”
Perhaps doubting the efficacy of her positivity, she continues, “Think about this: my grandma had my mum when she was 16. Now women go to college and choose when they get married. You killed all the babies that you [could have] had at 16 and 17. And 18 and 19. All those eggs… There are trillions of children and children’s children who didn’t happen because we as a society have said we value women having autonomy over who and when they marry, when they have kids… I don’t think anyone in society would say that women should all be forced to have kids at 16.”
‘There is a genetic component to substance abuse,’ Siddiqui says. There are even, she adds, ‘certain aspects of personality that have a genetic basis.’
Well, no, but that’s different from selecting embryos when there is no apparent medical need to do so. There is something about the randomness of birth that is seen as almost sacred. Siddiqui is ready for this. “I think because it’s sacred, it is incumbent upon us to use the best science [we have] to give this person we’re bringing into the world the best chance at a healthy life. If a child needs more resources, then we should be summoning those resources earlier, not leaving it to the last minute, once it’s too late to intervene. There are so many of these situations where if you intervene earlier, you can either totally avoid the illness or significantly alter the trajectory of that child’s life.”
She talks at immense speed for hours, the words tumbling out of her. Even my voice recorder can’t keep up with her and at times I have to ask her to slow down. “Sorry, sorry,” she says breathlessly, slowing down a fraction before galloping on again. “When children are born without a skull, they might suffer and die within a week [or be] a stillborn. So it strikes me as very cruel to say to a family who’s going through IVF that you shouldn’t have this information – especially if you’ve already buried a child… Three per cent of babies are born with birth defects. Six per cent of babies are born with a neurodevelopmental disorder. We don’t have treatments. We have vaccines for smallpox and polio. And that’s about it. So unfortunately, the most humble thing to do is actually to screen embryos and identify the risks early. Because medicine is still in the Stone Age. We can’t cure most chronic diseases. A lot of people we serve weren’t going to have kids because they were so worried about the child suffering… So the idea that you should stigmatise access to information about the health of your embryo is offensive to me.”
So what you’re doing is editing out the risk? “Not editing,” she quickly corrects me. “Editing would mean you’d be manipulating embryos that already exist. This technology is just expanding the menu of choice.”
Although a lot of what she says makes good sense, I find that anyone I talk to about Orchid recoils when I explain what it is doing. Is she surprised that the subject causes some upset? “It honestly doesn’t make sense to me. People are already choosing embryos based on sex, which is a lot less important. They obsess over the most silly things: playing classical music or rock music during pregnancy; whether to have an organic or non-organic apple.”
Late last year, the first Orchid baby was born to a San Francisco couple. Siddiqui posted a film of herself meeting the baby, Japhy. His mother, Leah, was 38 when she married. “We both have family history of type 1 and 2 diabetes and my husband has a history of bipolar in his family, so we wanted to see if there was anything we could do to mitigate some of those issues,” Leah says. “It’s a huge relief to have the information to make informed decisions.”
Siddiqui is thrilled to have met Japhy. “This baby represents the future of how all babies will be created, hopefully.”
Dr Michael Feinman, an IVF doctor, says Orchid provides a valuable tool in preventing severe diseases. “While there are ethical considerations and societal implications, the primary focus should always be on the wellbeing of the future child and reducing the burden of disease on families and society.”
Orchid is also working on a way to predict if a future child is predisposed to addiction. “There is a genetic component to substance abuse,” Siddiqui says. There are even, she adds, “certain aspects of personality that have a genetic basis”. Maybe, I speculate, one could stop a future serial killer being born. Or someone like Vladimir Putin. Siddiqui looks doubtful. “I think you still have free will. You’re predisposed to things but I wouldn’t go so far as to say you could predict character.”
She dismisses as “sensational and silly” a recent headline about her that ran, “This woman will decide which babies are born.” “It’s the exact opposite of that. It’s the parents who decide; I don’t decide anything.”
Yet given the strong feelings the technology engenders, I ask if she sees any downside to what her company is doing. “I don’t think so. I think this is something that society has been waiting for. For generations. So much had to develop in the history of humans for us to be able to get here. It’s up to us to decide the morality and how it’s used. It’s just data on embryos at the earliest possible stage.”
She acknowledges that for some people, it is just too much information. “For people who want to take the risk and do it traditionally at home, more power to them.” But, she cautions, “Genetics is really messy, and so many things can go wrong. Your genetics is a lottery. Why don’t we try to make it a little more fair?”
Society will eventually embrace this technology, she believes. “Previous generations would consider IVF as taboo and stigmatised. And now it’s the opposite.” We are back in the car and she makes an analogy. “Self-driving cars were considered really scary and crazy, but look at the data: how many car accidents are there with human drivers? Thousands. Waymo had to pass one million miles without an incident. In the future, our grandkids are going to think it was so unsafe on the road before self-driving cars.”
She feels that Orchid is her “life’s work”. “It is the most meaningful work I’ve ever done,” she says. “We want to bring it internationally around the world.” She herself plans to decide which embryos to implant after her second round of IVF. “I built the whole company because I wanted to do that.”
A few minutes after we part, she sends me links to two YouTube videos set to music: one showing her marriage proposal to her partner, the other his proposal to her. The videos are sweet, if corny, and clearly prove the romance in their relationship. As she runs into his arms on top of a picturesque cliff, I note that Justin Bieber’s Anyone is playing and the accompanying lyric is, “You can’t predict the future.” Except now, of course, you actually can. b
Here is the link:
I offer this article for comment as I am really unsure how I feel about this approach to “baby-making””
I guess many would like the control and risk reduction that is offered while others would really hate the lack of ‘natural processes’ involved.
How do you feel about what is offered here?
David.
