← Honestly with Bari Weiss
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- [00:03]
A
From the Free Press, this is honestly and I'm Bari Weiss. Three years ago, Nellie and I became parents. And now we spend a lot of time changing diapers in inopportune places and a lot of hours doing something we didn't do as much before, and that is worrying. Worrying about what to feed them, how to educate them, how to protect them, how to keep them healthy. They're babies. And yet I'm already thinking about the best summer camps, pediatricians, piano lessons, all investments meant to give them the best chance in life. I would do anything, as any parent would, to help my children become the most successful and happiest version of themselves. But what if I could start earlier, at the molecular level? What if I could ensure that my children were healthier, smarter and stronger before they even took their first breath? Right now, several biotech companies are doing just that. They offer embryo screening for couples undergoing ivf. But these companies don't just score embryos for disease risk, which has become standard practice for anyone undergoing ivf. These companies go further. Nucleus Genomics promises optimization of traits like heart disease and cancer resistance, as well as intelligence, longevity, body mass index, baldness, eye color, hair color and more. It even promises to predict a predisposition to become an alcoholic. It's not far off to imagine a future where people may be able to do more than just screen and select, but to make tweaks to our own embryos in order to optimize our future children. This isn't something out of Huxley's Brave New World. It's the very real and very near future. Indeed, some would argue it's already here. In order to understand what's around the bend, though, you need to understand what's already possible today and to understand the conversation that's in store for you today. And it's a rich one. I want to quickly tell you about two types of gene therapy. The first is called somatic editing, and it's already being used on people. In May at the Philadelphia Children's Hospital, it was used to save the life of a baby boy born with a rare metabolic disease. The second kind, the kind that conjures up images of designer babies, is called germline editing, and it involves tweaking sperm, egg, or embryos to change a child's DNA before the baby is born, thereby preventing them from ever having that disease in the first place. It is much more elegant and efficient technically. It's also much more contentious ethically, because it involves tampering with evolution itself, turning the most intimate part of human life reproduction into a site of engineering and optimization. The already life changing impact of somatic editing helps us understand what's possible with germline editing. But the prospect of shaping children before they're born raises a tangle of moral dilemmas, one that has an impact on all of us. And to be honest with you, this is a topic where I don't have a set opinion. I can really see the arguments on both sides, which is why we thought it would be such a good topic for a debate. Recently we convened a group of people to answer the following Is it ethical to design our unborn children and are we actually morally obligated to do so when the risks of abstaining include serious diseases? Or does designing babies cross a line? Is it wrong to play God and to manipulate humanity's genetic heritage? Arguing that designer babies is not only an ethical choice but a moral imperative is Jamie Metzl and Dr. Alison Barrett. Jamie is a technology and health care futurist who was a member of the World Health Organization Expert Advisory Committee on Human Genome Editing. He's also written several best selling books on this subject, including Hacking Genetic Engineering and the Future of Humanity. Allison is a veterinarian who has become an incredible force for genetic research since her daughter Quincy was diagnosed with Angelman syndrome. She serves as Chief Science Officer of the foundation for Angelman Syndrome Therapeutics and chief Development Officer for at a biotechnology company where she helps accelerate gene therapy programs for Angelman syndrome. Arguing that designer babies is unethical is Carter Sneed and Dr. Lydia Dugdale. Carter is a bioethicist and a law professor at Notre Dame. He served as General Counsel to the President's Council on Bioethics under George W. Bush and as an appointed member of UNESCO's International Bioethics Committee. He is also an appointed member of the Pontifical Academy for Life, which advises the Pope on bioethics. Dr. Lydia Dugdale is a physician, medical ethicist and professor of medicine at Columbia University, where she serves as Director of the center for Clinical Medical Ethics. She is also Co Director of Clinical Ethics at New York Presbyterian Millstein Hospital. It's an amazing group. A quick break and we'll be right back with their debate. Stay With Us. Honestly is proudly supported by the Jack Miller Center. At a time when our democracy faces real challenges, one question matters more than ever. Are we preparing the next generation to understand and uphold the principles that define America? At the Jack Miller center, they believe the answer begins in the classroom. Their mission is to revive the teaching of America's founding ideals, documents and history on college campuses, in K12 schools and beyond. Since 2004, the Jack Miller center has built a national network of over 1300 scholars who are bringing the American political tradition to life for students across the country. And through their Teach for Freedom campaign, they're working to reach millions more by 2026, our nation's 250th anniversary. Why? Because a strong democracy depends on informed citizens. The Free Press is really proud to partner with the Jack Miller center on Old School, a new podcast about how great books can change your life, hosted by the brilliant Shiloh Brooks. To learn more about their work or to get involved, visit jackmiller center.org Again, that's jackmiller center.org.
- [07:07]
B
Before we get started, I want to take a moment to thank an organization that I've been involved with since college and that I'm so, so proud is sponsoring tonight's debate. And that is the foundation for individual rights and expression. Please give them a round of applause. Okay, let me explain the rules of tonight's debate. Each of these four debaters is going to get five minutes to make an opening statement explaining their proposition on the motion. This is the beginning of their effort to convince you. Tonight. We'll start with Jamie, then we'll go to Carter, then Allison and then Lydia. Then we're gonna get into it. And these people are very nice, so hopefully they're gonna draw some blood. We'll see.
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A
Then at the end of the night,
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B
they will have two two minute closing statements. So how do we decide who wins? It's the team that changes more minds. The team that sways more of your
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A
minds by the end of the night
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B
will be named the winner of tonight's debate. So these guys have their work cut out for him. Let's see who can change the most minds over the course of tonight. Let us get started with Jamie.
- [08:19]
C
Thank you very much. It's my great pleasure to be with you tonight. Although I strongly believe editing the pre implanted embryos of future humans in very limited and carefully considered ways will someday be justified, I also believe we must be extremely conservative about the conditions in which this can and should be carried out. All of life and potential life is extremely precious and must be treated with the greatest respect. But there's a reason our ancestors domesticated plants and why we've more recently developed medical treatments to save the lives of children and others who would otherwise die of terrible and perfectly natural genetic disorders. Not having consistently available food and letting our kids die may be perfectly natural, but they're also highly undesirable all of our most powerful technologies have tremendous upsides and potential downsides, but that doesn't mean we should either utilize them without limits or ban them as unethical. Controlled fire, agriculture and industrialization, the cornerstones of our modern lives have all been massively beneficial and occasionally harmful for our species. We don't ban them as unethical, but regulate them for the common good. I was one of the first and loudest voices condemning the deplorable Chinese biophysicist He Jiang Kui for genome editing the pre implanted embryos of what became the world's first CRISPR babies born in China in 2018 and 2019. Dr. He's actions were both a violation of the Hippocratic Oath and Nuremberg style human experimentation. As a member of the World Health Organization Expert Advisory Committee on Human Genome Editing, I also helped draft our demand that a Russian scientist refrain from editing the pre implanted human embryos he said he was planning to take to term in 2019. I completely understand how the idea is of genetically modifying the pre implanted embryos of future children scares people. The possibility of life changing technologies being misused should both scare us and inspire us to proceed with thoughtfulness, extreme caution and significant guardrails. But while we fear and work to prevent abuses, we must also consider the life affirming treatments that are already saving lives at the intersection of medicine, assisted reproduction and biotechnology. There are today at least eight designer babies already living in the UK who've had their fates changed from being born with often death sentence mitochondrial disorders to being born perfectly healthy. I don't have time to go into the details, but these births are the result of heritable mitochondrial transfer treatments of pre implanted sex cells, a procedure stemming from extremely responsible science, extensive public consultations, effective oversight by the UK Human Fertilization and Embryology Authority, and highly informed parents hoping to pass the gift of healthy life to their children. Today, somewhere between 1 and 3% of all children are born with single gene genetic disorders, many of which can prove fatal or massively debilitating. Some of these disorders are currently treatable, but many are not. Here are the options we can do nothing Abort pregnancies when concerning signs are indicated. Engage in fetal surgery to try to address the condition in utero, treat the disease if possible after the child is born, or screen out or edit harmfully mutated embryos prior to implantation during in vitro fertilization. I am not here to make a case for or against any one of those options. Different approaches will almost certainly make sense in different circumstances for the well being of future generations, we must allow the careful consideration of all of them while avoiding unjustified vilification. In some cases, if treatment after birth is clear and easy, that might be the best option. In other situations, like where both parents would otherwise pass on a grave untreatable genetic disease to all of their children, and where the number of embryos may be limited, making minor edits to a pre implanted embryo and may provide the greatest contribution to the health and well being of the future child. Why would we possibly prejudge this kind of process by randomly labeling one treatment inherently unethical, even though the approach might be able to change a child's story from a tragic death after a few painful months to a heroic death at 100 surrounded by generations of children and grandchildren? That's why our careful and cautious WHO expert committee asserted in 2019 that, quote, it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing. Our use of the words at this time made clear that we believed, like most other expert commissions on this issue, that heritable human genome editing was not inherently unethical, just not ready for broader human application. We can easily imagine future scenarios where heritable genetic interventions might significantly decrease our lifetime risk of dementia or cancer, offer us greater defenses against novel pathogenic viruses, and perhaps even give future generations the chance to survive on a planet made inhospitable by climate change. We'll need to carefully weigh the potential benefits and risks for all of these hypothetical approaches. Of course we need to recognize that manipulating dynamic living systems requires existential levels of care and caution. Of course we need to recognize that highly effective and broad based governance and regulation are required at all levels. Of course we need to recognize the danger of bad slippery slopes.
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D
10 seconds, Jamie, 10 seconds.
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C
Acknowledging that applying these technologies to save lives in carefully designed and limited use cases might slide us down good slippery slopes towards saving more lives and making more dreams come true. While we must aggressively call out the irresponsible, I was just to be fair, I was told that I would have six minutes. While we must aggressively this is to
- [14:18]
D
take it up with this step.
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C
While we must aggressively call out the irresponsible and ill considered applications of heritable human genome editing as unethical or worse, branding all potentially life saving and life affirming approaches that way today would be like calling agriculture unethical 10,000 years ago or calling vaccines unethical now. While neither this is the end. While neither unequivocally condemning heritable human genome editing, nor blindly supporting its unlimited application. We must make sure its limited future applications are carefully considered, well governed and responsibly delivered.
- [14:54]
D
Wow, Jamie.
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B
Okay guys, six minutes on the clock for Carter in case he needs it.
- [15:00]
E
Just to be fair, Jamie should have Gene edited his statement. Just kidding. I love Jamie. We're best buddies now. Many thanks to Barry, the organizers, and my fellow panelists for this opportunity to participate in this important and timely conversation. Tonight we're talking, or I will be talking, about germline genetic engineering of children modifying the egg, sperm, or embryonic offspring of parents to make specific genetic alterations that will be passed on to the children of every future generation of that lineage. Nearly every country in the world that's considered this question, including our own, but also progressive nations like France, Sweden, Germany, Canada, the UK and bodies such as the EU and the Council of Europe have effectively banned it, mostly out of concern for possibly insurmountable safety issues that could have multi generational destructive effects. But I'm going to put questions of safety to one side. The title of this event is A Question Is Designing Babies Unethical or a Moral Imperative? To get to the heart of the matter, I'd like to refine the question slightly and ask instead whether it is ethical to design our babies. Let's unpack the individual parts of this formulation to see if it sheds light on the fundamental ethical issues at stake and offers any guidance as to how we should act. First, what does it mean to design something? To be clear, it is not designing a baby to conceive. Multiple living human embryos by ivf screen for preferred traits such as sex, iq, skin color, eye color, and the like. Discard and destroy those embryos that don't make the cut, and then transfer those that do to initiate a pregnancy meant to result in the birth of a live child. That's sorting, not designing, which comes with its own set of vexing ethical questions, some but not all, of which overlap with tonight's discussion. Designing, by contrast, is engineering, or building a thing to a particular specification of one's own preference. It is the exercise of rational mastery and control over an object that one might desire very much but is still one's own creation, one's own built project. Second, what, and more pointedly, who are our babies and what do we owe to them? To say our baby is to identify oneself as a parent. Our baby is a relational statement. It indicates the connection of parent to child. How should a parent think about the identity of his or her child. The best answer to this question that I've heard is from Leon Cass. A baby is a mysterious stranger that we welcome and love unconditionally. Our baby is a gift. And the fitting response to a gift is first and foremost, gratitude, unconditional welcome, and love of another who is utterly dependent upon us for her survival and flourishing. As parents, we're called to love without counting the cost or seeking anything in return. Alongside gratitude, the fitting response to the gift of a child is humility. With that comes the virtue of what Bill May has called openness to the unbidden. A related virtue is tolerance of imperfection. The opposite of these virtues are hubris and pride, desire for rational mastery and control, manipulation and even commodification. This child is ours in the sense that we are family and and in that way we belong to one another. But she does not belong to us in a way that an object belongs to us, even one that we've designed and constructed ourselves. We did not build this. We don't own this baby. We stand to her in a relationship of stewardship and love. To borrow the words of Gil Mylander, who borrows them from a more ancient source, only a child that is begotten and not made can truly stand in equality dignity to those around her. So is it ethical to design a baby using germline genetic engineering? Not in the sense of design as I used it above. Creation of a being with elective traits and characteristics that reflect our desires and aspirations. I would respectfully suggest that this is not consistent with an ethic of giftedness and the love that parents owe to their children. But I would distinguish such action and motivation for making a therapeutic genetic intervention that has been proven to be safe and efficacious in a child already here, even at the embryonic stage of development, for the sake of correcting a serious gene based illness or pathology in order to restore her to a species specific range of healthy function. That by my lights, is using the art of medicine to care for one's child as a patient. It is not the same thing as designing our baby. Thank you,
- [19:40]
D
Thank you to my fellow debaters. 12 years ago, I became pregnant with my second child. It was incredible news. Another baby girl. Which came at a moment when my own life was thriving. At that point I was a successful veterinary interventional radiologist, focused on solving unmet medical needs. That meant building solutions for the incurable, creating devices to bypass failed organs, treating congenital defects and repairing malformations, giving animals and their families a second chance at life. This career shaped My understanding of medical ethics. I remember when we developed the first artificial ureter for a cat. We implanted it, and the cat thrived. Thousands more followed. And no one asked, is this ethical? Should we be doing this? Of course. You relieve suffering if you can. You innovate to restore health. And yet, when we talk about applying technologies, infinitely more transformative technologies that could save children from devastating genetic disorders, suddenly we all hesitate. That divergence became deeply personal when the baby girl I was carrying 12 years ago was born. Her name is Quincy. At five months, she was diagnosed with a rare, severe random neurogenetic disorder caused by one single faulty gene. It's called Angelman syndrome. A single mistake in over 20,000 genes. But it robbed her of nearly everything. Her speech. She can't speak a single word. Her independence, completely gone, leaving her to rely on others for every basic function in life. It brought relentless seizures, sleepless nights, and difficulty walking and balancing. And yet, Quincy is gorgeous in every way. She shines. She's radiant and joyful.
- [21:27]
F
Flowers.
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D
Funny and smart, deeply social and highly opinionated. She's irreplaceable. She's memorable. And she is specific. After her diagnosis, my life changed. I dedicated myself to fixing what was broken in her. I became the chief science officer at the foundation for Angelman Syndrome Therapeutics, or fast, where I now oversee the development of nearly a dozen gene targeted therapies, including gene replacement and gene editing strategies to restore that one single genetic mutation that was stolen From Quincy and 500,000 other people around the world. These technologies, some already in clinical trials, are medical marvels. But gene therapies given after birth can target only small portions of her cells. They bring profound improvement to human lives, but they can rarely restore full function to an entire organ, especially the brain. The only thing that could have done that for Quincy would be by editing the egg carrying this random mutation at or before fertilization. So, in plain terms, what we're debating tonight is whether you would cure my daughter of all or only part of her disease. Whether to give her some advantages she doesn't have today by editing her today, or the full independence you and I take for granted every day. If Quincy were to become an embryo today and germline editing were off the table, my choices would be circumstances dark terminate or consign her to profound hardship. Many would advise termination. Try again. Have yourself a healthy baby. It's random, but that logic misses something essential. I don't want another child. I want Quincy. I want her laughter, her humor, her kindness, and her essence. But free of the hardship of Angelman syndrome, free of the burden she and I never chose. We live in a time where fetal surgery corrects spirit sina bifida. Congenital heart defects are repaired in utero, and intervention keeps moving earlier because prevention is stronger than repair. So why stop short of the earliest intervention when a single corrected sperm or egg could prevent a lifetime of suffering in every single cell, not just some of them? So I ask if you wouldn't hesitate to let me repair her malformed heart or reconstruct her ureter. Why not let me repair her gene at the point with the highest chance of success? Why is this any different? Consider cancer. If we had the technology to prevent it before birth, would any parent refuse? Would any doctor say, no? Let this child experience that cancer and endure chemotherapy, radiation therapy, and pain, and then we'll do our best to eradicate it? Of course not. And yet that is exactly the argument made when we outright reject germline editing. Let me be clear. This debate for me, is not about designer babies. Not about eye color, height, or iq. It's about potentially preventing Angelman syndrome or Rett syndrome or cystic fibrosis and ALS and thousands of other horribly devastating disorders. And not by terminating every affected embryo, but by preserving that specific human life, just unburdened by disease. And so the question is simple. If we accept medicine postnatally and surgery prenatally, why stop short of curing disorders at their origin when success is likely greatest? Why accept partial improvement after birth when we can prevent suffering altogether before? If we can responsibly ensure a child is born free, free of devastating disease, is it not our moral imperative to do so? I stand here as a clinician scientist who knows these tools exist, as a drug developer pushing them forward, ensuring their safety, and most of all, as the mother who has held her seizing daughter in her arms, begging for it to end. I cannot and I will not accept preventable suffering and as destiny when we have the potential of these solutions before us. And if this were your child I was speaking about, I know you couldn't either. As a parent, you would shake the world to find a cure for your baby. Especially when the technology is able. Will we let fear paralyze us? Or will we use the extraordinary knowledge humanity has built to potentially create a future free from the cruelest genetic disorders? Responsibly for me, for Quincy, and for the millions of other children yet to be born, the answer is not just yes. It is we must. Thank you.
- [26:11]
F
Well, thanks to Barry and the Free Press team and to my fellow Panelists who are now my friends, so it's hard to debate with them. Before I begin though, I just want to make very clear where I stand and where I believe Carter stands. We fully support gene edits to cure diseases. When those edits won't be passed on to subsequent generations. The safety issues there are beyond what we understand right now. But we can debate the possibility of doing these edits, as Alison brought up, assuming we get the technology where we need it to be. Those are my preliminary. Now I need six minutes. Okay. This country's founders believed it was self evident that all men are created equal. But the proposition before us tonight is that people do not have to be created equal. The prompt for this debate asks, is designing babies unethical or a moral imperative? And my answer is, first, it is definitely not a moral imperative, and second, it is certainly unethical. First, the moral imperative issue. A moral imperative is a command that dictates how one should act. There should be no command to design your baby because it gives, at best, the illusion of control. We don't fully understand the human genome. We don't understand how environmental factors affect our genes, and we do not understand how all genes and parts of the genome affect each other. So let's assume, for the sake of the debate, that we get to the point where we understand how all our genetic material works. Remember, and you might not know this, that our human DNA actually makes up only a tiny fraction of the DNA that affects our bodies. So what's the other DNA? It's actually the DNA of the microbiome, which, which refers to the viruses, bacteria and fungi that live on and inside our body. So to put this into numbers, DNA numbers, we think that the human genome, or we know that the human genome codes for about 20,000 genes that instruct our bodies how to act. By contrast, the microbiome codes for about 20 million. And those 20 million genes of the microbiome actually affect our our health. They are known to affect digestion, they affect our immune systems, and they even affect how our brains function. So yes, we might get to the point where we can edit our baby's genes, but there is zero chance we will ever be able to edit the DNA of the microbiome. Designing babies also should not be a moral imperative for another reason. You can edit out all the diseases you, you want, but in the end, most young people die from injuries, not from disease. Unintentional injuries is the leading cause of death every year for people ages 1 to 44, far surpassing deaths from suicide, heart disease, Liver disease, diabetes, stroke, and something else I forgot combined. There should be no moral imperative to design a baby, because trust, try as you might to tinker with that baby's DNA, designing children simply feeds this illusion of control. And it also feeds a lie that we are nothing more than our DNA. And that leads me to the second part of my remarks on ethics. The idea of designer babies is unethical because it's fundamentally a eugenics project. Now, eugenics was the name given to the ambitious movement among societal elite about 100 years ago to improve the human gene pool. The idea was you take really intelligent and good looking people and you tell them to get together and mate and they produce enhanced offspring. This is the same thing we do when we breed horses for speed or muscle or good looks. Now, how were we attempting to improve human stock? Well, in the 1920s, it was quite fashionable to go to state and county fairs and participate in fitter family contests where families were assessed against one another, much the same way Bessie the cow is assessed among other cows. They were assessed for their hardiness, for their fitness. And the families that won these contests were encouraged to have lots of babies. Then there was the Repository for Germinal Choice, which, better known as the so called Nobel Laureate Sperm Bank. This was created in none other than California in 1979. And the idea was you get lots of smart men to donate their sperm, including at least one known Nobel Laureate, and you produce very intelligent babies. And that sperm bank is thought to have produced about 218 very smart kids. And then of course, as Barry mentioned in her opening remarks, the 80s and 90s with the rise of IVF brought the possibility of combing through catalogs of potential sperm and egg donors and identifying those characteristics that you might want in a future child. But here's the problem. These efforts at encouraging optimal reproduction always have a dark side. If we want some people to reproduce, than we want other people not to reproduce. Even if we don't say this out loud, if some traits are desirable, then clearly other traits are not desirable. This is why the United States forcibly sterilized some 70,000 people in the early 1900s, most of whom were poor, non white and with intellectual disability. This is why the US Supreme Court supported this move, declaring, this is our Supreme Court quote, it is better for all the world if society can prevent those who are manifestly unfit from continuing their kind. End quote. Of course, in the 30s and 40s, Germany got onto the forced sterilization campaign and forcibly sterilized some 400,000 Germans, mostly with mental illness and intellectual disability and then killed another 300,000 Germans. And of course, you don't need me to talk to you about how The Nazis murdered 6 million Jews because they were deemed racially and therefore genetically inferior. Silicon Valley might be able to sell Americans on genetically modified offspring, but the assertion that some lives are worth creating always means that some lives are not worth creating. And perhaps some lives may not be worth living. And in fact, perhaps some lives may be worth destroying. Vote NO on designer babies. Thank you.
- [33:33]
A
More with jamie metzl, Dr. Alison behrend, carter sneed, and Dr. Lydia dugdale after the break. Stay with us.
- [33:49]
B
I don't know if there's ever been a more nuanced group of people on a free press stage. And so I want to draw it out both for myself and for the audience to. To make it clear where you guys actually disagree. And I want to speak to what Alison so powerfully said there at the end, which is why is it different? In other words, what is the moral or ethical distinction between germline editing, editing her daughter before Quincy, before she came into the world, and only being able to give thanks therapeutic medicine? No, I'm using the incorrect terminology afterward, which would not fully heal her.
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F
Why is it different?
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B
And is it different for the two of you?
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F
So the distinction is between edits that only affect the human being as present and edits that can be inherited. So even if Quincy, if we may, since you brought her into the conversation, even if Quincy were to have to have been edited as a fully born child, those edits would not be passed on to any future children she might have. That's somatic editing. Just in Quincy's body, when you're talking about editing egg, sperm or embryo, those edits are always passed on. Now, I said this very quickly in my remarks, but safety is a big thing. We don't understand what it means to tinker with one piece of DNA and what the ramifications might be on another part of DNA. We do know that some genes, for example, have both benefits and harms. And so because we don't understand what happens when we make changes to the gene pool that can be inherited, there's been really almost a worldwide consensus that we should hold off until we study and understand the technology better. I was just trying to complicate this by saying there's all these other things we can't control that affect genes, and we have no idea how they will affect them.
- [35:56]
B
So if it's no secret that in a relationship where there is not a man, you need to use ivf, which is how we have. My wife and I have children. When you go, this is standard practice, you go to the embryo place. There's a lot of these new ones. Ours was in a mall. They basically say to you, they grade the embryos, okay? They say it's an A embryo, a B embryo, and a C embryo. And you can make decisions about whether or not you want a boy or a girl. But basically they're like, you put in the A embryo. It's the healthiest embryo you have the best chance. Is that complicated for the two of you? I just want to understand how deep the opposition goes.
- [36:39]
E
So back to the question. Yeah, so you've. The biggest. The reason that there is so. In bioethics, there's very rarely international consensus. There's something like international consensus in the early 2000s about what's called cloning to produce children, sometimes called reproductive cloning. Everybody was against that. The same is true of germline gene editing. There is a consensus about not doing germline gene editing. And the reason for the consensus is the issues around safety. That's the principal driving force behind the consensus. The issue is, as you just said, if you make a mistake, if you have an off target modification, you modify.
- [37:15]
B
Let's assume it is safe.
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E
See, that's the problem though. Is it like, how do you.
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C
How could you.
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E
As a question of structuring a research protocol to test the safety. How do you test the safety? Because in the. And again, maybe there's a way to do it.
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D
There is. There is.
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E
Okay, well, go ahead. So there's a. My final comment that I made in my remarks was a therapeutic intervention to help a child, even a child at the embryonic stage of development, if you could do it in a safe and efficacious fashion, strikes me as a very different proposition than the notion of designing babies. The question that I think we're responding to is, is there a moral imperative to design a baby? Helping a baby who has a genetic abnormality repair the genetic abnormality, if you can do it in a safe and efficacious way, is not. That is not designing. Right. And that's why I think the conversation is nuanced. I don't think I didn't hear anybody make the case for designing babies in terms of elective traits like iq, sex, et cetera. And so that's sort of what I think we were primarily talking about. But in terms of the apparent consensus among all these countries and the WHO and all these other intergovernmental bodies, is that the scientists, at least the consensus thus far is that there's yet to be a possibility of imagining a way of making it safe. Now, that's a practical obstacle, right? And one not an in principle sort of obstacle. Now you asked, I'm sorry, to keep monopolizing conversation.
- [38:41]
B
And then you're going to tell us how it already does exist.
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E
And your sizzle reel, and then you're of kind comments about the grading of the embryos gets closer to the kinds of concerns that I have about what's the proper fitting, ethical, loving parental relationship between a child and a parent is the notion that you don't. The more you introduce rational mastery, technical control manipulation into the procreative process, you're moving away from the sort of ideal which may never exist in reality, welcoming and accepting your child in an unconditional way. Your child is not your project. Your child is in fact another human being who has dignity and agency and autonomy. And so the idea of imposing rational mastery in that way and even in the context of selecting for certain kinds of traits, I think that raises the same problem. Right? And then, of course, there are issues involving the moral ontological standing of the embryonic human being being early on and how to think about that and what the ethics of manipulating and using and destroying embryos are. Which one actually isn't the main question in the issue of Germline gene editing? Because we're talking about helping in a therapeutic way a child at the embryonic stage of development, which in fact actually points to the continuous identity of the child from embryonic fetal newborn stages.
- [40:00]
B
Jump in, guys. You don't need to wait for me.
- [40:02]
E
Sorry. Take so much.
- [40:03]
C
Not at all. Thank you so much. So raise your hand if you've seen the movie Annie Hall. Come on, guys. All right, so you know the scene when they're in front of the movie theater and people are talking about Marshall McLuhan. And Marshall McLuhan walks up and says, I never said that. So in response to what Carter said about these commissions saying we should never do germline, I was a member of the World Health Organization Expert Advisory Committee on Human Genome Editing. We were the lead organization deciding making these recommendations. And what we said, as I said in my opening remarks, is we weren't ready at this time. So at this time means not. It's not should be banned, it's at this time. So absolutely there are safety issues that need to be overcome. What you described, Barry, when you went to your mall was eugenics. That was eugenics. You had whatever you could also argue
- [40:52]
B
that eugenics is just dating for sure.
- [40:55]
C
No, for sure. That's what I'm saying is you. We can like eugenics, So that's assortative mating. But eugenics in the sense that there were 10 potential lives in that laboratory. And using that mechanism, your embryologist reviewed them and said this one looks pretty good. You could also extract a few cells at five days of maturation in the lab and you could genome sequence all of them. And you could. Well, this one looks like it's not going to have a deadly genetic disorder and this one looks like it will. And you could use that to make so just that something is eugenic. I'm the child of a Holocaust survivor, so I'm extremely sensitive about issues of eugenics. But there are also issues of how do we optimize for our health. Allison's child had a de novo mutation, which means it just was randomly generated. But there are lots of people like with Huntington's disease disorder who have heritable terribly deadly genetic disorders. And you can just trace the families generation after generation. And so what we're saying is if you, if your thing is, well, we're not going to try to change that single gene mutation that leads to unbelievable misery across multiple generations because we have this for some reason, this thing. Oh no, that's terrible. We can only treat them after they're born. Even though the treatments are. Aren't that good. That doesn't make any sense to me. And so Carter, I think you. With love. I think you conceded the whole debate.
- [42:22]
E
Actually I felt like you did when you said there was no design.
- [42:24]
C
No, no, hold on, wait, hold on, hold on. Let me make my point. I feel like you conceded the whole debate when you said if you had a pre implanted embryo and it had a deadly genetic abnormality and you needed to change that single mutation in order to get that child from that future child. Someone who would die after a few months to. To live an entire life. That is designer babies. You are changing. No, I'm saying. So I'm saying by any.
- [42:48]
B
The word design is totally different.
- [42:51]
C
As somebody who has been part of this debate for 20 years, when people say there's making heritable changes to the human genome and there is not making heritable, once you say well, we can do it in some circumstances, then we can say well under what circumstances? So if you think that under any circumstance it would be morally justified to make that one single change to eliminate Huntington's disease from an entire generation of a family, then you agree that it's a moral imperative, not that everybody has to do it, but that some people be allowed to do it. I think that's the key point.
- [43:26]
B
Lydia, go ahead.
- [43:27]
F
Yeah, no, well, you had a thought immediately.
- [43:30]
E
So the reason this debate is hard to get your arms around is because we're not talking to each other. I drew a distinction between designing, which has to do with elective non therapeutic interventions versus a therapeutic intervention. Right.
- [43:47]
C
So germline. So this is a germline. Because when Barry said, use a specific
- [43:52]
B
example, we have an embryo here, the
- [43:55]
E
debate is the question on the floor is is it ethical to design babies? That's the question.
- [44:01]
B
But you guys are using the word design differently. So don't use the word design. Edit an embryo in order to prevent a horrific disease.
- [44:09]
E
That's a very narrow question. That's not designing.
- [44:11]
B
Yeah, I think what is the difference between editing and designing?
- [44:15]
F
But Barry, I think editing is a human, I think. And Jamie, some of your work, your published work talks about this. Once we're very comfortable with the technology where we can edit a gene in an embryo that will be herited to prevent a devastating disease, there's no reason that the technology won't expand. I mean, why? This is the question, this is why we have put them together. And so I am drawing the line because of safety issues at no changes that are heritable. No changes, I'm sorry, because of safety issues. And I don't think we will ever in our lifetimes get to it being safe enough to do it. At the same time, I can imagine a scenario where you say it's one edit, it's going to give this child life in an unbelievable way. Are we willing collectively to accept the risks of not knowing? And it may be that we say, well, we don't understand DNA 100% but we're like 95% of the way there. Let's just take the risk. But once we open that door, everybody in Silicon Valley is going to be editing their babies to the nth degree. And that's where we spiral downward. I don't think there's any way to keep the.
- [45:31]
B
That's the whole point of the debate, Carl. They're saying, I'm trying to get there. Yes, you're getting us there. Because what I'm hearing broadly is you guys are saying not worth opening the trapdoor. And you guys are saying worth opening
- [45:44]
C
the trapdoor in very limited. Contained, careful.
- [45:47]
F
It will never be contained.
- [45:48]
D
See, but this is where I don't agree and I think scientifically, I think we're at a point when we talk about the word design. Let me just go back to the word design, because that's, I think, troublesome a little bit. To me, selective editing is design, and that includes severe debilitating disease. That's what I interpret as design, not necessarily hair color iq.
- [46:05]
B
I love that there's a baby in
- [46:06]
C
this room and he's voting.
- [46:07]
F
Yeah, he's voting.
- [46:08]
D
Let's pray that baby does not have Angelman syndrome. But I look at this as selective editing, and I look at selective editing in which the. The only way to secure the safety of that child is that every cell is edited. The only way to ensure every cell is edited is that you edit at the stage of an embryo, which means their germline will be edited. But I also do not want my daughter to perpetuate Angelman syndrome to other babies because she has edited and can now procreate and now will make more babies that will incur suffering. So, to me, I think the technology is actually very close to being there, and I do believe in our lifetime, it will be there. In terms of understanding off target, the technology of understanding off target editing has escalated in the last nine months in a way in which you would never believe. And so it may not be there today, but the question is, is it a moral imperative? In my world, eventually it will be today. I don't think anyone's editing babies, but if we can determine from a regulatory perspective, the risk of doing nothing outweighs the risk of doing something.
- [47:17]
B
So I want you guys to contend with what I think is the strongest argument on this side, which is the second this technology becomes available, you guys know so much more than me about when that will be. If that's already here, let's leave that to the side. The second it becomes available, what is to stop. Stop it from being used?
- [47:36]
D
Regulation builds.
- [47:37]
B
Six foot six.
- [47:38]
D
Like everything else in this world, we can't.
- [47:40]
E
You know, there are no regulations at the. I'm sorry to interrupt you. Please go ahead. I didn't even know.
- [47:43]
D
No, no, that's okay. There's. I think that like everything else in this world, things don't start, and then suddenly it's just exploding. And everyone could do anything. With medicine, there are regulations. If we have a proper regulatory system, there will be regulations in which this would be considered a clinical trial under regulatory provision. And then you can only do it in certain circumstances where certain things are followed.
- [48:07]
C
If I could just add.
- [48:08]
E
Just respond briefly. So in 1978, the first IVF baby, Louise Brown, was born and it was in the early 80s, the first American IVF baby was born. In the IVF context right now we have a regulatory landscape that is completely unbounded. There is no regulation on sex selection. There's no regulation on trait selection. People are doing these, the polygenic risk scores for iq, they're doing all kinds. So if we look at like what the regulatory landscape looks like right now, there are interventions the hyper wealthy are
- [48:37]
B
in their way designing.
- [48:39]
E
And by the way, the center for Germinal Choice that the Nobel laureate that you mentioned was William Shockey, if memory serves, who was a white supremacist and everybody else was a schlub, you know what I mean? Like I'm sure they were great people, but they were not Nobel laureates. And he was a white supremacist Nobel laureate. So the point is, if we look as a law professor, as a regulator to say, okay, are we prepared as a legal framework to regulate this context? And if we open the door to it, if safety can be resolved, which I think is a hard question, can we say yes, you can edit for the sake of therapeutic interventions, which I don't think anybody in principle objects to. But you can't intervene to change your babies height, IQ, eye color, etc.
- [49:22]
C
But you can to change a Huntington's disease or a single gene deadly mutation that would be heritable.
- [49:27]
E
You're saying there's no precedent in American law or regulatory practice in the past 40 years that supports the proposition that we have the will to regulate assisted reproductive technologies for applications of non medical purposes. The most common form of pre implantation genetic diagnosis in America is sex selection. Okay. That's the principal application of PGD in the United States. It's available in 85% of IVF clinics in America.
- [49:53]
B
What's PGD?
- [49:54]
E
Pre Implantation Genetic diagnosis. For the sake of seeing what kind of chromosomes your embryonic child has. Is it a little girl, is it a little boy? And we can imagine what happens when those decisions are and those are ratified by the American Society for Reproductive Medicine, which has a wide, wide open libertarian perspectives.
- [50:11]
B
Carter, do you think that selecting sex is wrong?
- [50:15]
E
I do, yeah. I do, yeah. I mean, I don't want to. I mean, let me put it a different way. I think that it is inconsistent with the kind of mindset of open unconditional love for one's children that best personifies the parent childer.
- [50:27]
C
What about that specific question of this? There's a pre implanted embryo. You have one, you do the. It's through IVF you do the pre implantation genetic testing, you find. Find it has this heritable gene for Huntington's. So you think it is ethical or unethical or allowable or unallowable. Presuming that it's safe to make that single change so that the child and all of its progeny moves from having Huntington's to not having Huntington's.
- [50:57]
E
If we stipulate that it's safe and efficacious, which I think is the contested question, then I wouldn't object to that.
- [51:02]
C
But the point is that's a designer baby.
- [51:05]
E
That's where we disagree. That's not a designer baby. That's medical care for a child at the embryonic stage of development. That is taking a child at the embryonic stage and using a gene intervention to help that child. As opposed to what you're describing, which is the kind of elective non medical interventions which by the way. And the point is, the current point which Lydia raised is we won't be able to control this. We won't be able to stop it. And let's say, how have we done with ivf? Terribly, if you look at IVF selection. Yeah.
- [51:33]
F
I'm going to jump in. So if we. You guys are proposing regulation. Carter's saying we haven't regulated any of this ever. And it's already the Wild west, which it is. And you would concede that, I think.
- [51:44]
C
Well, it depends.
- [51:45]
F
Hold on, let me finish.
- [51:47]
C
Sorry, I was trying to answer the question.
- [51:49]
F
You must.
- [51:49]
E
Orchid is in business, friends.
- [51:51]
B
It is the one.
- [51:52]
E
I mean Orchid is in business. Nucleus is.
- [51:54]
F
So this whole debate is contingent on so many contingencies. Even if we get to the point where we can regulate it domestically, and we agree domestically, we all know that the wealthy, the connected people who have home countries where this technology is available will just go and do it. The Chinese were the ones who already gene edited the first embryos. Right. The embryonic stage. And so we already have these two little girls that living in China in an undisclosed location. Right.
- [52:23]
E
One of them is a mosaic for sure.
- [52:24]
F
Yes. Where we don't even know the downstream effects of what this doctor had done to them scientists. And so there's no guarantee that the safety of this population with all of these unknowns is going to be maintained by domestic regulation, which won't ever happen.
- [52:41]
B
Let's just stay on the Chinese doctor for one second.
- [52:43]
E
Sure.
- [52:44]
B
We ran a really interesting piece about about him recently and his wife and anyway could be a great look it up. Exactly. But Jamie said that that was a Travesty or something.
- [52:55]
C
I called it Nuremberg style human experimentation.
- [52:58]
B
You know, for those who don't know in the room, and you guys will correct me if I'm wrong, this is a doctor who took it upon himself to make two babies, three that are immune to HIV or aids.
- [53:09]
C
They're not immune.
- [53:09]
E
That wasn't their goal.
- [53:11]
C
That was the goal.
- [53:12]
B
But what makes that more different than what you guys are suggesting?
- [53:15]
C
This is because it was totally unethically done. They didn't get proper consents from the parents. They lied on the irb, the review I'm talking about, and it was bad substance.
- [53:25]
B
I'm asking about substance, though.
- [53:27]
D
It's preventative versus that's what I'm getting at. And I want you to explain the difference. That's what I think is different. And I think when we think about, you know, there's the debate of is it ethical or unethical.
- [53:37]
A
Right.
- [53:37]
D
I think we all agree that curing disease at a germline stage, which you may not, but I think you do, is ethical. With the right regulations, with the right safety and the right technology, that we can understand the future implications of that. One day that will be the case. The question is really about do we believe it's ethical or unethical. The fact to do it is ethical, and I think most of us agree with that. The fact of when to do it is at what point in our future will this be a point where it's safe and regulated is the question. And so our argument here is that this is an ethical thing to do, particularly as it relates to devastating disorders. And that's where it needs to be regulated.
- [54:23]
B
What I'm hearing a bit from the Carter and Lydia side of things is maybe, I don't want to say a different conversation, but there is a layer of religiosity and a sense of. I mean this. I don't mean. I mean this in an observational way of the connection between the parent and the child. The tenor of the arguments you're making sound a little different. And I don't know if you actually agree with what Alison is saying because of that.
- [54:51]
E
Well, I feel like. I feel like the arguments for doing anything you possibly can to save your child is equally normative, possibly religious in nature too, like so. I mean, I think that the point on which. So you all would agree then, if I can ask a question that if we were to have this regulatory framework, which has never existed ever in the history of the United States and ivf, when all kinds of eugenic things are going on right now and in fact are accelerating. Put that to the side. You would agree with a regulatory regime that flat out banned any non medical interventions. It would ban iq, height, athletic talent, music, skin color, eye color. You'd agree with that. You'd ban designing.
- [55:33]
C
If we wanted to apply slippery slope arguments, nobody would ever go on a first date with somebody.
- [55:39]
E
We already had a ski slope for 30 years in the United States to look at.
- [55:42]
C
And so the issue is not where can every extreme slippery slope take us? The question as you framed it in your introduction, Barry, is, is the human germline sacred and can never be altered by humans?
- [55:58]
B
But the reason we're doing this debate is not because of a thing called germline. The reason we're doing this debate is what Carter's saying is true. It is already the Wild west out there.
- [56:08]
C
So take the United Kingdom I mentioned.
- [56:09]
B
That's why it's interesting.
- [56:10]
C
In the UK they had a 20 year process, a deliberative process through their. The parliament established the Human Fertilization and Embryology Authority. They had extensive consultations, they educated the patients, they did town halls across the country and they came up with this extremely careful regulatory system. And now eight children exist who are the product of mitochondrial transfer treatments which are heritable. So already these are designer babies and their lives have been saved through this process. We are all against all these horrible extremes. We're against Nazism, eugenics and all of these terrible things. But the question is, when faced with this narrow set of circumstances, are we going to deny parents the opportunity to take this deadly genetic mutation out of their germline in making this one small change? And if you accept that one small change, then you are voting for a moral imperative to enable people to do it. If you think nobody should ever be able to do it under any circumstances because of this imagined slippery slope argument, then you should vote for these other wonderful people.
- [57:24]
F
So for us.
- [57:24]
E
Yeah, you go ahead.
- [57:25]
B
No, no, the thing I wanted. Carter, do you want to jump in
- [57:28]
E
or can I just for the minute. Yeah, go ahead. You go ahead.
- [57:31]
B
What you have written so powerfully in your work about the over medicalization. Sorry if I'm using the wrong terminology of end of life and the pressures that are put on people and the sort of norms that get established once the door is open, and I'm thinking about organ donation and things you've written about that. Can you apply that same logic to this argument? In other words, once it becomes an option, how people feel the pressure to go along with it as a norm?
- [57:58]
F
Oh, Yeah, I mean, absolutely. That was sort of what I was trying to start to get at before. But even if something is very carefully scripted in this country, and I am all for treating disease, I am a physician, even if something is very carefully scripted, very carefully regulated, it won't stay within the confines of this country. Right. And so you will be able to buy your way, you will be able to extort your way, you'll be able to find some way to do what you want to do. And that is coupled, of course, with what you're getting at, Barry, which is sort of the technological imperative that, that drives so much of medicine. Often patients feel like if there is an option, they want to move forward, not recognizing that sometimes life expectancy, quality of life, and many other factors are actually improved. If you just don't do treatment. Now, that's not the case with treating a disease that's caused by a single edit. That's a very different scenario. But the possibility of doing something because we can is ever present in medicine. And then that's coupled with the hubris of physicians and physician scientists who think that really we are God's gift to humanity because we have come up with these great treatment plans. And you see this most notoriously. I'm going to get into trouble here in oncology, where there is sort of a impetus to keep doing third line of chemotherapy, fourth line, fifth line, just keep going. Because we have something else in the tool bag. Not recognizing that this is a human being who is suffering under the weight of all of this treatment, whose life is being shattered, who's becoming a professional patient because of what we can do. So all of that sort of lies behind thinking. And I'm very not nervous. I'm not a nervous person. That's the wrong word. But I'm very reluctant whenever my colleagues come in as sort of saviors who think that they have the answers. And I just think we need to be cautious. And what I still haven't heard the Jamie and Allison side can see is that once we start making germline edits that will be inherited for diseases we want to cure, that the door won't be opened to skin color, eye color, intelligence and height. And I haven't heard that. I feel like you were almost conceding.
- [60:34]
E
I think let's sharpen the question even a little bit. I think this is really important what you're saying, Lydia, as usual, but let's sharpen the question. Would you accept a law that banned germline gene editing for non medical traits?
- [60:46]
C
So I think yes or no? I would be. My feeling is asking that question. Hold on, hold on. Is conceding the entire debate. So my answer is I would be totally fine with that. Because if you believe that in these cases where somebody is. You're going through ivf, you have, let's say, your single pre implanted embryo. Your embryo is carrying a single mutation for a deadly disorder that will be passed down to future generations. And if you believe that there should be a law only allowing that very specific intervention, then you believe that there is a moral imperative to allow.
- [61:25]
E
Answer the question. Do you support that law?
- [61:27]
C
I would be perfectly happy.
- [61:28]
E
So you'd be happy to ban any kind of genetic screening or engineering.
- [61:31]
C
Asking the question for the sake of none concedes the entire debate. Because you agree that there is a moral imperative. If there's a moral imperative in this one single case, then there is a moral imperative. By our saying that we should prevent, intervene in this one scenario doesn't mean that we're signing up for the Nazi party and we want to be part of eugenics. But the question is, are you going to deny this single case?
- [61:58]
D
I will say that I live every day with postnatal gene editing and gene therapy. I talk to the FDA on a regular basis about this. There is definite regulations around gene editing and gene therapy postnatally and in utero. Huge regulations around it. The amount of work you need to do to prove safety and efficacy is
- [62:15]
E
for safety and magnesium risk, not for the application of the.
- [62:18]
D
And the application for it postnatal and in utero, not
- [62:24]
F
embryonic. So this is.
- [62:25]
D
I'm talking about somatic. So postnatal baby's born and they have devastating disorders and we're doing a gene therapy clinical trial. The amount of regulations you go through, including monkeys and mice.
- [62:36]
E
For safety and efficacy.
- [62:37]
D
For safety and efficacy, not for ethics.
- [62:39]
E
For safety and efficacy.
- [62:39]
D
For safety and efficacy.
- [62:40]
E
Exactly.
- [62:41]
D
Yes. The amount you go through for that. So the question was, are there any regulations or it's the wild wild west. It. It is 100% not the wild wild west. Postnatally and in utero gene therapy for sure. And now gene editing. Cause CRISPR is happening, as we all know, with kj, the little baby from CHOP that just had a gene edit for liver metabolic disorder.
- [62:58]
E
Somatic gene editing.
- [62:59]
D
Somatic. Right, right. Postnatal. So what I'm saying. And now they're going to. In utero. So they're going in the womb and the baby's being developed. What I'm saying is that there are regulations that are There it is very strict regulations that are there, and there's no reason. And those regulations are not going to be pulled down until they're younger and younger, where you can address more cells more safely. That is very different than what's happening on the in vitro fertilization front, which is very different than the medical intervention front. And I believe that the world needs to come together to improve those regulations and that safety in order to make it safe to address the disease at the earliest time. So my answer is yes, I would agree that it should be for medical indications that are a necessity only as long as there are appropriate regulations and it is considered safe. And we can understand the risk benefit tolerance based on those impacted by the disease, not based on people that think they understand disease but don't live with the disease or don't experience the disease. Because a lot of people will say, how dare you? Like, when? Why would you take such a risk? Well, until you live with a disease, living every day is a risk. The risk of doing nothing completely outweighs the risk of doing something for very debilitating diseases. So that's where I would draw my line. Medical intervention. Yes.
- [64:18]
B
I just want to underline one thing I want to ask you guys. The baby that Alison just referenced that I mentioned in my opening statement, that has the somatic editing. Go back and do germline editing to
- [64:29]
A
get rid of that.
- [64:29]
B
Would you do it?
- [64:31]
E
Is the condition a heritable condition?
- [64:33]
D
No, it is de novo. It's a de novo mutation.
- [64:35]
E
So, no, it's not.
- [64:38]
D
The gene happens at the egrosperm stage. The family's just not a carrier. It's just a random. Like my daughter.
- [64:44]
E
Gotcha.
- [64:45]
D
Random mutation at the egg stage. So she had Angelman syndrome from the day of fertilization. And the only way to fix her entire brain was to do it at the stage of fertilization. Doing it postnatally, where her brain is developed, we can only get to 10% of her cells. So we can't fix her. We can only help her.
- [65:02]
E
Could you edit the gametes? Would it work?
- [65:05]
D
If you do it at the egg or sperm stage, you would be editing the gametes. If you do it postnatally, you still might get to the gametes.
- [65:11]
E
Could you still succeed in having a child without this heritable disorder? If you edited the right gametes and corrected the genetic abnormality in the egg that you just described.
- [65:21]
D
If you can correct her egg when she was fertilized, yes.
- [65:24]
E
Yeah. So that's okay.
- [65:25]
F
So that would be something.
- [65:29]
E
Can I say one very quick thing. If you were to ask someone on the street what is a designer baby, they wouldn't say it's a baby who's had a genetic illness that's been fixed in utero at the embryonic stage. Or they would say they might.
- [65:42]
C
They would. For sure they would.
- [65:43]
E
I don't think they would because a designer baby is a. Is a baby that is been created for the sake of elective traits and characteristics.
- [65:52]
C
Barry framed this topic in your introductory remarks. And so again as you framed it, there is heritable genetic manipulations. So if you believe that editing a heritable genetic disorder, a single gene mutation causing a deadly heritable, maybe not so deadly. You have to grow to reproductive age to pass it on to future generations. If you believe that it would be ethical to edit that pre implanted embryo to fix that one gene, that one mutation, then use your brain.
- [66:26]
B
Because the reason we use the phrase designer basis, because it's provocative and because you guys mean very different things when you use it.
- [66:32]
E
But if I were in the audience and someone said, are you in favor of designer babies? I wouldn't interpret it as saying, are you in favor of a therapeutic intervention to restore a genetic abnormality? It's provocative. No one objects to helping children.
- [66:46]
C
Oh no. But everybody. You said in your own thing that all of which was incorrect, but that all of these commissions have said it can never be done.
- [66:54]
E
I didn't use the word never. You could look at the. Exactly what you said.
- [66:58]
C
What we said in the who you
- [67:00]
E
said not right now.
- [67:00]
C
We said not right now. Which means that at some point went for this exact kind of scenario that not like happened with He Jiankui in 2018 and 2019, but when there is a deadly genetic disorder that can be fixed at the embryonic stage so that a child doesn't die or have a.
- [67:20]
F
So Jamie, let me jump in, let me jump in. So I have maybe been the most conservative on this stage, although that's not my usual role in life. And I do think we need to be careful about anything that is passed on. But there's a way to think about this kind of macro, a macro view of it, which is that if we get to the point where we are letting everybody make whatever edits they want because we've been able to figure out how to get skin color, eye color, intelligence and height and athleticism and piano ability built into this whole algorithm, that's going to be so many more edits with so many more possible unknowns than the one off Bilitium.
- [68:02]
B
Why is category passing on sacred? Why is that a sacred category?
- [68:07]
F
It's a safety issue.
- [68:08]
D
But why is it okay to pass on Huntington's disease or pass on deadly disease, but not okay to pass on a fixed gene that will no longer pass on Huntington's disease? Why is that okay?
- [68:19]
F
No, no. So the point that I'm trying to make is that if we have your regulation in place, place, and it were implementable worldwide, there would be very few of these changes which create the unknowns, because I don't think we'll ever get to 100% safety, predictably. So it will create far fewer unknowns. And I think that there would be a world in which we could all come together and say, yes, let's treat these very rare diseases that are single edits, preventing this from ever happening. But there's no way that it's not going to expand where we will then have millions and millions and millions of edits into the gene pool worldwide. And that's the problem. That's what I don't see how you can ever be comfortable with. Because even if we get our safety pretty close, we will be opening the door to so many more unknowns by this going globally.
- [69:12]
C
And so there is with every kind of thing, there's a possibility if we start something that will keep going and going. And so I'm not going to say that that's an impossible view. Even though these traits that we're talking about, like intelligence, I mean, it's thousands and thousands of genes. We don't even know how many that is 500 years from now. Now we have people who are being born with deadly genetic disorders that could potentially be pretty prevented before they're born and before they are implanted in the mother? Yes, there are fears of slippery slopes. And the question is, for this, 500 years from now, fear, which I think is legitimate, do we want to sacrifice all of these kids who are going to die when we have all kinds of other situations where there are ways of treating people where we say we're going to do it in limited cases. Allison mentioned gene therapy. It's not like everybody's doing gene therapy. Are there people who are going to Panama and Kazakhstan to do kind of crazy gene and stem cell therapies? Absolutely, yes. And it's horrible. Are there people who have terrible diseases like Victoria Gray, who's been cured of sickle cell disease for who now she has a life with her four children. So, yes, we should be afraid of slippery slopes, but does that mean that we should Ban a potentially life saving treatment that can really help people now.
- [70:37]
F
But just to be clear, this is not a 500 year in the future possibility. I mean, Silicon Valley is ready to capitalize on those.
- [70:45]
C
But to do enough gene edits to influence something like intelligence, that is, that is hundreds of years beyond our capacity?
- [70:53]
B
I don't think so. Why would that be hundreds?
- [70:55]
D
Because we don't know what controls intelligence.
- [70:59]
C
Lydia was 100% correct about the complete. We know very, very little about the full complexity of our biology. So with these single gene mutation disorders, we know that if you have one letter that's off, it can be totally deadly or devastating. Once you get to these levels of complexity or these elective things that are thousands of genes like intelligence, to make that number of change, we would fry people because we just don't understand so what we're talking about. And yes, will we go from addressing single gene mutation disorders to two gene mutation disorders to three? And the answer is probably yes. Will we get to designing people who are 20ft tall and green with huge muscles? That's science fiction.
- [71:47]
E
So no designer babies then? The reason, as a safety matter, as a matter of complexity, that germline is treated differently by all of these intergovernmental bodies and by all these countries is because making a mistake in this context has multigenerational and catastrophic consequences. That's why it's hard. That's why they're saying, not now, not now until we get this thing sorted. Now our colleagues are suggesting that we can get it sorted out and have safety and efficacy squared away. And those sorts of safety considerations are going to be off the table again. It seems to me that the issue is again, medical treatment. If I were to get a medical treatment myself, I wouldn't be designing myself. If I were to try to give myself enhance my memory or wakefulness or something that in the world of enhancement is something that people associate with design. And the problem is we have a terrible track, right? And I would say that the Warnock Commission and the HFEA in the UK is actually not a good example because if you talk to Baroness Warnock, she says we basically were making it up. We were having these staged events, we came back, we made up a 14 day rule. It didn't really mean anything about when you can stop at working on an embryo versus when you have to stop doing research on an embryo 14 days. And so the UK is not a good example of how to. And it also regulatorily is not analogous to our federalist framework and our regulatory state either but the bottom line is it's not a slippery slope to say, how have we done with ivf? Have we been able to police the distinction between therapeutic interventions versus enhancement versus non therapeutic? And the answer is, we've done no job at all. The FDA will regulate the safety and efficacy of these interventions. It will not and cannot, under its statutory authority, speak to the ethics of it. FDA has nothing to say about how you use this for eugenic purposes, for therapeutic purposes, for enhancement purpose purposes. That is beyond the scope of their authority. And that's. So it's not a slippery slope. We look at what happened in the art industry now. The only people who are animated to lobby in Congress are the American Society for Reproductive Medicine, which is like full steam ahead in which Sean Tipton, who is their principal lobbyist, said, I would not accept any law that restricted sex selection because people should have maximal reproductive autonomy because it's important to people to have a reproductive automatic experience that's meaningful to them.
- [74:09]
C
You mentioned IVF 1978 with Louise Brown. There were tons of. There were these massive debates about whether IVF should be banned. And the Catholic Church and other people were saying, this is an abomination. So, yes, there's a bit of a wild west, but how many lives have been brought into the world through ivf? And so again, the question is, do we have to ban this thing?
- [74:30]
B
Okay, you guys are going to have a chance.
- [74:31]
C
We're afraid of slippers.
- [74:32]
B
You guys are all going to have a chance to make your closing arguments right now because this was fascinating and I realized I completely lost track of time. Thank you, Joey, for telling me that. Jamie, let's start with you.
- [74:42]
C
So I will say Lydia is 100% correct. Human biology is extremely complex. What we're talking about is intervening in very complex systems. We don't understand them all that well, but we do know that in situations where there are small mutations causing massive harms, we may have the ability to fix them. And so. So labeling this whole field of science, this whole field of medicine as inherently unethical would deny us this potential opportunity even before we begin. I think you used the word certainly unethical. I don't think that is the case. When we say a moral imperative, it's not a moral imperative for everybody to do it. It's a moral imperative for us to be open to the possibility to create a regulatory infrastructure so that people can have the ability to bring future life into the world in a safe way. We have that. It's a little bit confusing for you in Your voting. But I've been part of these debates for 20 years and Barry had it exactly right. If you believe that it is ever ethical to make a single gene manipulation, a single letter manipulation to change a life that would be short and deadly to extended by making this single letter change to a pre implanted embryo, you have no choice but to vote for us. I mean that is the essential thing. Designer nobody is here is saying we should design green giants wandering. That is the question is should heritable, should germline heritable mutation be. Be allowed in any circumstance? If you believe that you should vote for us. If you don't believe that it should, if you believe what Lydia is saying, that under no circumstances should it ever be allowable, then that's a very ethical view, different than ours and you should vote for them.
- [76:33]
B
Okay, Carter, let's go to you.
- [76:34]
E
So the good news is no one on this stage supports the creation of designer babies. And therefore everyone on this stage should vote the way 66% of the audience because you guys were right in thinking am I voting for open ended modification of my child to meet my own aspirations and desires, not merely the narrow question of in certain circumstances, if hypothetically the safety and efficacy were resolved, and hypothetically a regulatory framework could be created that is better and different than the absence of one that we have had for the past 30 years in the analogous context of art where they're already selling products for designer babies. If you believe in all of that, you still should vote yes. Because designer babies, the reason it's provocative is because it has to do with enhancement. It has to do with choice about the identity of a child that have nothing to do with their health and flourishing. It is not designer babies to change for certainly not somatic gene therapy. And we don't live in a world right now where there's safe and efficacious germline gene therapy. Nor do we live in a world where there's regulatory scheme that could prevent these non medical interventions. And therefore everyone should join Jamie and reject the notion of designer babies.
- [77:49]
B
Thank you, Carter. Allison.
- [77:52]
D
So I think we all agree that the definition of design needs to be clarified. And I think we also all agree that the definition of design is selective editing. And selective editing editing can accommodate various different traits. And what we're proposing here is that the traits that we feel deserve to be designed are those in which cause significant debilitating and or deadly disorders that we can control. And being that we cannot generally control them after birth. And we are living and succumbing to a life of incredible devastation. But we have an opportunity in which we can try to edit after birth. We can try to edit during pregnancy in utero, which is very well regulated and very well controlled. With the scientific advancements progressing rapidly, it means to me that as we get lower and lower in age and we can address the disorders with more safety, more efficacy, and improve the distribution of the edit to the organs that need it most. It is very clear that the question is, is it ethical or unethical? And it's very clear to me that it's completely ethical. What we're saying is that if it is ethical to help treat a baby that has a devastating disorder that you couldn't treat otherwise outside of abortion, in which case you are having another debate that is not on this stage, then the answer is clear. The answer is clear. And I think when we all agree that genome editing is acceptable after birth, we all agree that genome editing might be acceptable after the fetus is fertilized in utero. The debate here is the germline. Well, I hate to say it, but postnatal editing actually does affect the germline, because in vivo editing, where you deliver the edit into the blood of a born child, gets to the sperm or the egg, if it's a male or a female. Therefore, we are editing the sperm and the egg in a live baby that is currently under regulation, that is currently under, currently in clinical trials in multiple genetic disorders, of which each one of these are rare, sometimes ultra rare, affecting less than 200,000 kids per disease in the country. Yet there are 7,000 rare genetic disorders that are affecting babies and affecting adults and completely destroying the lives of them and their families.
- [80:08]
B
Thank you so much.
- [80:10]
F
As a professional ethicist, my husband likes to remind me that there are good ethics and bad ethics. And I have heard my colleagues opponents use the word ethics many times. And so we just want to be very, very clear about what kind of ethics we're talking about. We all agree on treating disease. We all agree, I think in very rare circumstances, perhaps editing the genome, when we understand all of the genetic implications of this, which we've also all agreed we won't get to, and it's properly regulated, which we also have said is nearly impossible in this country and certainly not possible worldwide. So in some sort of utopic vision of the future, it makes absolute sense to move forward and treat short of a utopia, then we have to draw the line somewhere where we decide perhaps something is permissible. Making an edit is permissible in a germline to treat a disease, but because we cannot guarantee any sort of safety, and we know that this will only lead to Pandora's Box globally and millions and millions of edits that have unknown repercussions on the health of humanity, we need to be very cautious in moving forward, get all of our ducks in a row and make sure that there is consensus, as J. Jamie has worked very hard toward before any undertaking of this sort takes place. And so therefore, if this is the way we're defining Designer Baby, we continue to be opposed to it and we encourage the audience to use an abundance of caution and prudence in weighing this and vote no on Designer Babies. Okay?
- [81:55]
B
It's really fun being the student stupidest person on a stage. Thank you all so much for joining us and looking forward to being with all of you right after this. Thank you.
- [82:07]
A
Thanks for listening and an enormous thank you to FIRE for their partnership and generous support of the Freedom Debate series. And thanks to you for listening. I thought this conversation was so provocative and also elevating at the same time, and I hope you felt that way. This is such a rich topic and one that impacts all of us. Share this conversation with your friends and family and use it to have an honest conversation of your own. If you want to support the kinds of conversations and good faith debates that we have here on honestly, there's just one way to do it. It's by going to the Free Press's website at thefp.com and becoming a subscriber today. Thanks and I'll see you next.