 If my microphone is live, that's good. Well, welcome everyone to the session which we are now formally calling what if anyone can edit the human genome? And the question, it's an interesting why ask that question today because we could have asked it last year or two years ago or 10 years ago or 15 years ago. And the reason I think it becomes topical today is that there's a new tool for editing the human genome that makes it easier for anyone to edit the human genome because it used to require a lot of sophisticated lab equipment and now it requires less sophisticated lab equipment. So we're gonna talk about some what ifs but I think one of the key points of this session is to separate the what if from the what is and to try to maybe, yes there are things that we can talk about but the more fantastical of them have been discussed for a long time and it's not new to this technology but there are some questions and issues that are being raised and will be, will have to be addressed by this new technology and so that's what we're gonna be talking about. So let me introduce our panel to my immediate left is Catrine Bosley, she's CEO, Chief of Editas Medicine which is a company now that's intending to come up with products based on this new technology which I'll call CRISPR and I won't tell you what CRISPR stands for because it wouldn't help you understand it all and then other people will call it CRISPR-Cas9 and that doesn't help either because it doesn't know, nobody knows what that means but it is a tool that Editas was formed to make use of, right? Yes. And next to her is Thomas Chalberg, he's founder and CEO of Avalanche Biotechnologies which is a company that's using traditional if I can say that gene therapy techniques to address problems, mostly eye diseases but I'm sure if he comes up with a bright idea or his scientists come up with a bright idea they'll address that as well. And next to him is Nita Farhani, Farhani, Professor of Law and Philosophy at Duke University and someone who's written and thought about these kinds of topics quite extensively and next to her is Ri Ping Xiao, she's the editor of the New England Journal of Medicine and also a researcher in her own right as I understand. And before we actually start talking to the panel we asked some questions of the general public or the general public that happened to come to the World Economic Forum website and or read the World Economic Forum blog or tweet and the question was what's your first reaction to the debate on editing genomes of human embryos? Now let's back up for a second and say okay, a human embryo that's done on the human embryo could in theory be propagated not only to that individual but throughout the human species. So it's a little bit different than doing therapy on a heart or eyeball or something like that because that kind of technique would be to that individual and would end with that individual's demise. If you do something to the embryo, it's possible that the embryo could turn into a functioning human that could then turn into a reproductive human that could pass the gene on to another person in the society. So the question, what's your first reaction to the debate on editing genomes of human embryos? And I'll read the answers excited because of the potential health benefits, excited because of the potential to enhance human beings in other ways, which I'm sure we will have interesting things to say about worried because of the unknown biological consequences of heritable genome edits, worried because of inequality of access arising from the cost of future interventions, worried because it goes against my religious beliefs. Neutral because although the science is new, the discussion is the same as for previous technologies and don't know, which is always the safest answer. And I think what we'd like to do is show you what our viewers or what the people who came to the website, how they voted. So why don't we have a look at that? Now, I suppose I should have done this in the other order, but can I see a show of hands from people in the room of how many people are excited about this technology? So, fine. And how many people are worried about this technology? I won't, I like that. People are worried and excited at the same time. Excellent. And how many are neutral about this technology? All right. Neutral, worried, excited. And okay, I'm assuming everybody else doesn't know, so I won't even ask that. So why don't I start with you, Katrina? First of all, do these results surprise you? People seem to be very enthusiastic. And this is again, we're talking about the what if. This is the future, this isn't happening today, but what if we could do this? So people seem to be excited more than worried. Well, I think that the first one, excited about the potential health benefits, it does not surprise me, because I think that folks who understand that there are many diseases where we understand the connection between a genetic mutation and a disease, oftentimes those are diseases that are very serious and poorly served by other therapies. So the idea that we could actually do something about it, people get that. So that one doesn't surprise me. The second one surprises me that there's that degree of excitement and potential to the way this is stated to enhance humans in other ways. I'm not quite even sure what that would be. That to me strikes me more as science fiction, but I think that there are a lot of that one and I would have concerns about, frankly. And then the worries, I think, are, you know, coarser worries about technology that is this new. And so I maybe would have expected those percentages to be a little higher. I think folks in the room got to vote twice, which probably is maybe a better balance if there's both excitement and concern. I don't know the format, whether maybe people could vote close. It looks like it adds up to 100%. By the way, just for anybody who's interested, there were about 270 people who responded. So it's not a huge sample. And well, does anything about the sampling surprise you, Tom? It does. I mean, I think what strikes me about the question is it's really editing genomes of embryos, right? I think there's two categories. One is what I call gene therapy or gene editing for as a pharmaceutical drug for adults to treat or prevent diseases. There's a very clear regulatory framework in place in the United States and with health authorities around the world to study the effects of those therapies and to make them available to the public. And separate from that, this is really going well beyond that. This has been one of the reasons that I said it's neutral because the science is new. But the discussion has been the same as for the last 30 or 40 years since we've had a recombinant DNA technology, people have debated this question. And generally, the consensus in the scientific community is let's restrict ourselves to somatic cell manipulation. Somatic cell are these cells that belong to an adult fully grown or not changing, not being passed on type of cell. Correct versus germline cell gene therapy and scientific communities agree that germline cell gene therapy or embryonic gene therapy should be off the table, at least for now. And so it does surprise me to see excitement around this more controversial field. I think the technology is new. But again, the discussion, technology is neutral. It's neither good nor bad. It's just the applications that we choose for it that can be used for benevolent or malevolent purpose. So your take? My take is similar in that I'm neutral in some ways. But I'm surprised that more people aren't neutral. And I'm also unsurprised that more people aren't neutral because I think this is a problem of communicating science so that people really understand the state of the technology and where we are with genome editing to date. So earlier this year, the first germline that is heritable type of modification of human embryos was approved by the UK to go forward at least in limited situations. And that was changing a different thing, which is if you think of the fertilized embryo when the sperm and the egg come together, you have the nucleus and then you have the mitochondria that surrounds the nucleus. The mitochondria really provides the energy for the cell. Whereas the nucleus, about 99.9% of traits of who we are, what we think of as genome material that makes us who we are, is within the nucleus. So the modification that was approved was of the mitochondria, but that is heritable. And so we're already doing germline modification. That was a pretty significant debate because people were worried about the slippery slope of crossing over between changing cells in current generations versus changing cells in future generations. We've crossed that threshold. Here's a new threshold. The answer to that debate for many people was, well, this is just modification of the mitochondria. It's not modification of the nucleus, and that's decades away at least. And then a few months later, CRISPR-Cas9, one of the first experiments in non-viable human embryos was published. And people said, oh, actually, it turns out you may be able to edit the nucleus as well. So I think the debate, the discussion about slippery slopes, about whether we should be doing health changes or enhancement changes or both, that's a debate that's been going on for a very long time. Now it's just a much greater reality and a much sooner reality than people expected it to be. So I'm glad that people are excited about it. I think we need to continue to have a democratic deliberation about exactly what applications we as a society are going to embrace and which applications we think are ones that should wait or that we might never cross the line for. But overall, this isn't such a dramatic change other than the time frame from which we can actually do these things. Ping, what do you make of these results? And do you think there, I don't know the nationality of the people who responded, but do you think that different countries would have different responses? Yeah, from this result, I'm not surprised. I largely agree with them. But the sample, maybe you take it mainly from local, right? I'm not sure. I think a little bit surprised to me, the religious beliefs, this get a 0% always. There are some people who have religious concerns, religious considerations. Here in this population, at least based on this outcome, it seems no one concerned about. Yeah. Technically, still, we talk about decades or centuries away to get the genetical modification technology mature. As a physician scientist, I am optimistic. Since this, I think, is inevitable, the way people are going to use it to deal with life-threatening disease, these CEOs over there. Doesn't matter how difficult, technically, or those regulatory concerns, but that cannot stop the development of the technology. So the new chapter, I think, starts. So Nida mentioned this experiment that was done here in China of modifying a human embryo, not a viable one, but to try to repair a defect that would have led to a lethal disease. Was there any response here in China to that, because it did cause some discussion in America? I'd like to say a few words about that case. That was published from a Guangdong group in the journal called Protein and Cell. In May this year, you may all familiar with the publication. We do hear different voices. Many people think, at least scientifically, nothing not a concern for ethnic issues. It's kind of a waste to use. But I'm surprised the government didn't organize any discussion for ethical or regulatory concerns. In the scientific community, scientists have different opinions. Absolutely. So personally, I think, for research, it's fine. But we did have a very reliable regulatory body to give us a good night's sleep. So does this kind of, yeah. So the response was what maybe even led to this discussion that we're having, does that make it harder for your company to move forward in other areas because you get tarred with the same brush of doing something that people might be ethically uncomfortable with? It's interesting. I think that if you want to work in this field because you care about trying to help people with the diseases that this technology may be able to help, this is part of the dialogue. So it all comes together. And it's part of being able to responsibly develop the applications that I think there would probably be broad agreement, makes sense, somatic cell therapy, therapeutics. You also have to be able to be a contributor and part of the dialogue on these possibilities that are much more complex, much less clear. And so I think that for me personally and I think for the people who work in this field, we want to be responsibly part of that dialogue because we do want to be able to pursue these other applications that are so compelling. And do you have to do both? I don't think you can completely separate them because if you're working in the field scientifically, you want to be contributing to that broader debate. There are just many more constituents who are important to have in that debate beyond just the scientific community. But that raises, Ping mentioned this notion of having some sort of discussion, public discussion. So you're in a private company, Tom. Is there something that you would hesitate to do? If you're a federally funded researcher, you have to have what's called an institutional review board to vet the work and decide whether it's appropriate and safe and also ethically acceptable. I mean, what do you do if you think maybe we're doing something that's close to the line? I think what we're really focused on with the technology that's available today is improving human health and bringing products forward that are having a really great risk benefit to patients. And I think there's many, many opportunities that both provide great risk benefit to patients and also are great markets to sell products and build the business into. So this is not something we spend a lot of time thinking about from a day-to-day perspective because our products are very clearly in the mainstream of pharmaceutical products that are there to cure diseases. I think as we move forward, I mean, as we move from the what is now to the what if anybody can edit the human genome, we have to have more discussion and also a lot clear regulatory framework. We don't really have a regulatory framework in place today for someone deciding they wanna edit their own genome. It's really around companies who sell and market products and make marketing claims based on those products that all of the health authorities monitor and look after, but if this were sort of a paradigm shift into a place where one could in their own garage, cook up something to modify their own genome, that would be a very different framework in sort of societal conversation. Yeah, so I'm just wondering actually that's an interesting point. I don't know if any of you have been in the conference center and heard the drones going around and you think, oh, I could out and buy a drone, but it turns out that if you wanna fly a drone over some thousand feet or something like that, you have to have approval from the FAA, the Federal Aviation Administration. So can you imagine any way of putting controls on a garage version of editing the genome besides people's good faith and love for humanity or whatever? The technology is pretty complex right now, so the idea that there's do-it-yourselfers who could be editing the genome of the embryos that they might want to bring into existence, I think, is pretty far off. But that being said, the regulatory structure varies very much country by country. So one of the things that was wonderful about the way the UK went about approving mitochondrial transfer is they have an explicit regulatory body called the HFBA, the Human Fertilization Embryology Authority that oversees reproductive technologies. They also have something called the Nuffield Bioethics Council, which is a council that looks at the bioethical issues from many different scientific discoveries and advances that come up. And HFBA did a long and very involved and publicly engaged process of looking at mitochondrial transfer, the first germline editing technology that was approved, and engaged the public in the UK and engaged the worldwide community in a conversation scientifically about what the realities were, the safety risks, the efficacy issues with respect to that technology. The Nuffield Bioethics Council separately did a very detailed and very notable ethical analysis, again, widely engaging the public in a dialogue about what the appropriate uses of this technology would be, what populations it could be applied in. And at the end of that process, then there was a significant debate within the House of Commons and the House of Lords before it was actually approved in the UK for use in a very limited population of individuals who are affected by this disease. That, I think, is a great regulatory process. It involves scientific discussion, ethical discussion, broad public dialogue, government entities, public, non-profit, sort of the full spectrum across society. In the US, we don't have anything like that. And part of it is that it's very difficult in the United States to be able to talk about reproductive technologies at a governmental level. It's a very divisive political issue. It is one of the fault lines within the US society around people who are pro-choice versus pro-life. I think Ping is quite right that the fact that the poll showed that 0% of people cited religious objections shows that this is not a representative population because there are many people who have religious objections to doing any sort of changes to human embryos and they view the research itself as problematic if they think that the embryo itself represents life. And so that's clearly not what the pulse of the broader public is. So can I imagine controls being in place? I think the UK models for us a good way to think about it. I think we need to do something like that on an international level, but also at a country-backed country level where we engage truly every segment of society looking at the scientific promise because there's great promise in these technologies and to realize that great promise we have to also consider at the same time what the constraints are for how we're gonna use it because as the shadow of all of this that Katrinaine mentions is you have to be prepared anytime you're talking about this to have the background of eugenics, the idea that people are gonna select for only certain types of individuals and select out treats and that we're gonna end up with a very conformist kind of society. And that's a big fear that we've realized in society in the past. And so it's not an unfounded fear, it's not a fictional world. We hope that we've made great progress since the American eugenics movement, since Nazi Germany, since the many different types of eugenic policies but all we have to do is look around the world's day and see that there continues to be selective pressures against populations. So there is a way, but it's a way that we have a big gulf between where we are in the U.S. and where many countries are to get there. The thing about me is such a regulatory framework as the one that Nita described in the UK. Is that a viable model? We in the United States haven't adopted it. I don't imagine a lot of countries are gonna go that direction. So what should be done? What other options are there? I mean, it's great if you live in the UK, but nobody else has quite followed that strict of a model. Joe, as I mentioned in the beginning, when the paper published from China, our government didn't have any discussion or any regulation to give scientists guidance. Whether we can adapt the UK regulations or U.S. regulations, that's really dependent on the government's decision-making process and the decision-makers. So far, I didn't heard anything about the concrete regulation yet. I hope in the near future, we will work out something. But by my understanding, maybe international organizations can provide global guidance. Yeah, so is, I mean, does that complicate your work in, or do you avoid international collaborations so that you don't wind up in a situation where you have one country, a member of a team, working with one set of rules and another with another? Where we collaborate, we collaborate a lot and hope to do a lot more of that. It's very much driven by the scientific and the clinical goals and who are the best people in the world to work with. And the patients we hope to help over time, we wanna help them wherever they are. So the international aspects, certainly there are local regulatory frameworks that need to be, of course need to be met on a country-by-country basis. In terms of developing medicines, that's relatively consistent across countries. There's always some local differences, but over a couple or three decades now, there's been a lot of work across international regulatory authorities to try to harmonize those regulations wherever possible. Again, this is for developing medicines because I think there's a realization that finding a common scientific standard for developing medicines made sense. And so, again, still some local differences, but there's a really pretty good degree of harmonization in terms of new medicine development. So I wanna, since we've got you here, I wanna go, I said there's a difference between what if and what is. What, I mean, you don't have a product yet, but what do you think is gonna be the first application in terms of medical use of some technology like CRISPR? Well, there's a long list of specific genetic targets that we're working on and that some others are working on. I'm wishing you exactly which one would come first. But some of these targets are a little bit easier in terms of the type of genetic repair that is required, and some of them are a little bit easier in terms of delivery. Delivery is a big challenge in this field and actually folks who worked on, dare I say, traditional gene therapy, which feels like an oxymoron, but work that's been done in other fields of genomic medicine, some of that can be adapted and leveraged to work with the CRISPR technology. So we can try to bring together different parts of the technical solution, but across all of the genetic diseases we would hope to help, it's a spectrum in terms of degrees of difficulty. So one of the ones that we're working on that is perhaps on the easier end of the spectrum, it's a genetic disease of the eye and genomic medicine work in terms of delivery, some of the work that Thomas's company has done, help us have ways to deliver to the eye and that may go more quickly. There's also, well, CRISPR is that specific technology that's capturing the imagination and the energy of genome editing. There are some earlier technologies for genome editing, one in particular called zinc finger nucleases where folks have worked on that for a number of years, it does work and the folks that have developed it have advanced that into clinical development. In fact, just yesterday or the day before in the United States, the Cominant DNA Advisory Committee of the NIH did a review and gave the approval to go forward with the first in vivo or in the body test of a zinc finger nuclease based medicine to advance into human clinical trials. So there have been good progress and careful, thoughtful work done by, this is a company called Sangamo, to take that form forward. Different specific technology but the same kinds of considerations with regard to safety and what's the appropriate application. By the way, I'm asking questions but I'm gonna turn to the audience to ask questions as well and if any of you wanna jump in, just jump in because that would make life easier for me. Maybe you could talk a little bit about why genome editing is hard to do. I think everybody thought when there were specific gene problems that could be leaked when they found a gene for cystic fibrosis, for example. The gene was damaged, fixed the gene, put it back in, the disease is cured, wasn't that simple. So maybe you could say what the issue is that CRISPR might help solve or that you have faced in trying to put fixed genes back into people. Sure, so when you think about gene therapy, technology, I'd say there's two major challenges or limitations that folks have been working on over the past couple of decades. One is efficiency of delivery, which Katrina mentioned. That means when you're using DNA, it's a highly negatively charged molecule. How do you get it through the cell membrane into the nucleus where it can do its job as DNA? So we have a number of delivery technologies or delivery strategies to help do that efficiently. One of the most popular ones is using a recombinant virus. Okay, so viruses are professional deliverers of DNA to cells, that's what they do. And so by swapping out the viral DNA with recombinant DNA, you now have what we call a gene therapy vector. And this can now professionally present your DNA into cells. As we've advanced this technology more and more, the delivery is getting better and better. But it's still a real challenge. Some diseases you need to transmit or transduce only a small number of cells in the body in order to have a big effect. One thinks of hemophilia, you can think about macular degeneration which Avalanche works on is a very, very small area of the retina or color blindness, which is another product. We have a very small number of cells need to be transduced by this recombinant virus. Okay, so that's a big limitation and it's getting better but certain applications are closer than others. I'd say the second major limitation has been specificity of once you have the DNA in the cell, what does it do? What are the off-target effects and what's the sort of efficiency and the specificity? So what does off-target mean? So you can imagine if you're trying to edit a specific gene and change one base pair to another or change a series of DNA to a different series of DNA, you don't just have effects on that target strand of DNA, you may have effects throughout other areas of the genome and those can be deleterious, they could cause social mutagenesis, we've seen examples of that clinically. And so how often does it do the right thing and how often does it do something else, right? So type one and type two error. And this has been also rapidly improving with CRISPR being the latest technology that is highly specific and efficient once you're inside the cell. And so I think both of these technologies are improving along the way, but they've been the major challenges of gene therapy technology innovation. So I'm gonna be radical here and turn to you, and I'll come back to you, Nina. What do you think in terms of research challenges has to happen next in terms of improving the technology of getting specific genes into specific cells? Like Thomas summarized, off-target definitely is the most serious. That's the difficulty to overcome. In the field, people are making progress quickly. At least at this moment, they know the technique, how to detect which gene is off-target. It's become more and more clear, but what's the long-term consequence biologically is not clear. And these kind of consequence could be long-lasting and heritable, can pass from generation to generation and maybe change the population. So that's really a big concern. So that goes back, I'll come back to you, don't worry. Oh, I'm sorry. That comes back to the question of do you want to change a few cells in the retina of an adult or do you want to change one or two cells of an embryo and have it propagate through the entire species? And I think it's a good time to talk about the other question that was posed to people before this session began. And the question was, whose opinion do you trust most in deciding whether the genomes of human embryos should be edited? And so the options were international organizations, national government, scientific journals, health and pharmaceutical companies, doctors, religious leaders, and nonprofit organizations. I guess that begs the question of what kind of nonprofit organization, but never mind. Maybe this time I'll go in the room first since you've heard about these things and we can see how the room varies from the people who are online. Can I see a show of hands for international organizations? Okay, there's a few people there. National governments. Ooh, that's interesting. No, not too much trust going on there. Okay, thank you. Scientific journals, should they be deciding? Well, scientific journal man. Not surprising, a couple others. Okay, health and pharmaceutical companies. No, not too many there. Okay, doctors. Oh, so people are comfortable. Okay, religious leaders. No, not too many religious leaders. Non-profit organizations. Presumably they don't include friends of the national zoo or something like that. Why don't we add a couple? Excuse me, I think we need some more options. Well, I was gonna say, I mean, maybe all of the above is. How about ethicists? Ethicists. Oh, some ethical hostility going on here. That's funny. Or just scientists, not scientific journals. I see, all right. Well, actually, I didn't, never mind. Can we see the results of how people voted overall? Scientific journals. Well, I can tell somebody in the audience is gonna be pleased. So yeah, some people are, pharmaceutical companies didn't do very well outside of this room either. So, Nita, I'm gonna ask you to respond to this since you obviously feel there should be other players in the game, including bioethicists. Why? Why are bioethicists? I mean, I want a job. Yeah, well, okay. A little self-serving, but never mind. I'm sure you have a broader explanation as well. Right, so one thing that I think is interesting is just seeing some of the smaller numbers. People don't trust governments necessarily and I think that's unsurprising to me and probably right given the history of state-sponsored use of technologies like this can lead to bad results. I think individual choice is a better place to be leaving the decision-making about the use of this technology than it would be in the hands of governments because if one of the major fears of the use of this technology is leading to some sort of eugenics, leading to misuse of the technology, individuals making choices about how to have healthy children is likely to continue to lead to a great deal of diversity. People are gonna be making choices to bring healthy children into the world not to bring all blonde-haired blue-eyed children into the world or all children who can play the violin really well and not play sports, et cetera, et cetera. So I think that's unsurprising to me. It's surprising the deadening response in this room of the lack of interest in ethicists playing a role and I think that's in part, I'm gonna in defense of ethicists say that that's a little bit of a misunderstanding of what the role of ethicists has been. It's not to put stops on technology going forward. That's an approach that certainly some bioethicists take which is to say have a moratorium on all types of progress in society if there's any risk, don't do anything at all. But a different approach from one that I certainly adopt is more regulatory persimmony. It's to say regulate no more than is absolutely necessary because what we should really be doing is enabling good scientific progress to go forward and scientific progress that happens without any sort of oversight whatsoever historically has not been the best science. It's science that is not replicable oftentimes because it isn't done with open transparency to ensure that the results are really robust results. It's done often in silence or on populations of individuals who aren't able to give their full and informed consent. And so informed consent, which is now a very thick concept one that's really adopted and respected worldwide is a concept that's still relatively new. Maybe 50 years ago, it became a recognized bioethical principle and is now part of research on humans and part of the process by which research actually occurs. And so those types of things, I think most people would agree that they would like their consent to be given or research is conducted on them or research is conducted on the population. Those are bioethical principles. And those principles come from not ethicists making the decision on their own. It's not some people sitting in a room and thinking they know best for society what should be done. It's recognizing that it's a process of engaging the public in democratic deliberation. And so there are principles that bioethics brings to the table like non-malificence, non-harm to people, autonomy and freedom of academic research and of research going forward, of public beneficence, things that actually benefit the good of people and justice more generally access to technologies. These are things that can guide a discussion but a discussion ultimately, I think is what needs to happen because international organizations can certainly serve a leadership role. Scientific journals have an essential part to play in making sure that only good research ends up being published and preventing bad research from being integrated into society. But also every person in this room and every person in society has a place in the debate as well and in the decision about who we should trust and whether or not to edit the human genome. Those are people who should be part of the conversation to help guide what the international norms will be and to guide what kind of research we're gonna allow to go forward and celebrate going forward and fund going forward and which research we think is more detrimental potentially or more concerning because of the heritable and long-term effects. Well, I have an idea about that. Do we have a microphone that we prepared to hand to the audience? I wanna ask the audience to get ready if they have questions but there's someone in the audience that I'm gonna take a chance of asking a question of given the fact that we're talking about this topic. No microphone, that's too bad. It's gonna come. So here's the question and I'm gonna ask Dr. Drazen who's sitting in the back and is an editor of a scientific journal and this is my concern about scientific journals. Let's say someone sends a paper like the paper that was appeared in Protein and another journal to the New England Journal of Medicine and you look at it, scientific journal, make a decision about whether it's ethical or not and you decide it's not. You don't tell anybody you've made that decision because you don't talk about papers that you don't accept. So how does the debate get furthered in terms of openness if scientific journals are the ones that are making the decisions? Because if it's a positive decision, we'll know about it but if it's a negative decision, we'll never know about it. So now there's a microphone behind you if you wanna answer that. And I forgive me for putting you on the spot like this but I'm sure you're good at it. I'm on the spot all the time. Yeah, exactly. I think the question is that you're suggesting that journals have more of a role in society at large than we are prepared or have the ability to take. NPR doesn't do a story on something. It doesn't mean the story is dead. It means NPR didn't think it was worth airing. We have to make this decision all the time. Somebody will sooner or later publish it who feels that it's appropriate to have a discussion about. And a lot of it will depend on the reasons why we thought that an article shouldn't move forward. And if we thought the science was terrific but that the ethics were marginal, somebody may disagree with us. In fact, I have found that probably the most peripatetic group of people we deal with are the bioethicists. You can put up a question and you can always find a bioethicist that agrees and disagrees with us vehemently. And so we would make a decision but that doesn't mean that the information would be suppressed. It would be brought out by someone who felt that it was worth defending and there will be somebody. There's enough outlets that it's not being suppressed. It's just whether we wanna, the journal that is publishing it is going to invest editorial capital at the time it's published and intellectual energy after it's published defending its decision. And we would decide whether this is one worth doing or not. We make that decision all the time. Right. I should explain. I think I forgot to introduce myself and why he meant that Jeffrey Jayson mentioned NPR. I'm Joe Palca. I work as a reporter for NPR and I'm a science correspondent and we cover a lot of things that are in these journals. But again, the thing that I'm curious about and need to talk about it is that we ask the question whose opinion do you trust most and scientific journals at least in that poll and some in the room said this was a great idea. The trouble is people are turning to journals to make decisions and if the answer is well somebody will publish it then that's not really a decision. But anyway, it struck me as an interesting question. And. Okay. To some extent when you see an article published in a journal at least according to how the world now functions. I can't say how it's gonna function in five years time. It's an external grade of the work. So if it ends up in a journal what people wonder about it's editorial standards versus one that has very high editorial standards that tells you something independent of the article itself. I'm only, okay, never mind. We can go on. I like this, I like this discussion but maybe I should broaden it out more. Do, does anybody, ah, we have a hand up and we have a question. Thank you. My name's Steve Kramer. I'm with the International Civil Aviation Organization completely out of this topic. But, Neeta, I didn't hear your question when you posed it or I would have probably been a little more positive. But what I think I heard when I looked at the poll I couldn't answer the question because there wasn't a none of the above or a collective. And I think the collective is what's necessary, what you described as the process in the UK. So I'm interested in how would we replicate that? You talked about the challenges in the United States but how do you make that model a model that can be adopted and guidance be provided globally? I think that's a great question. One of, I said on the US Bioethics Commission and the project that we're undertaking right now is to try to define what is the process of democratic deliberation on bioethics? How could we exactly do this thing which is have a broader democratic deliberation about complex emerging technologies like this one? So I think one of the things that I liked seeing on that poll was international organizations. And I think even an organization like the World Economic Forum, this could serve as a leadership vehicle by which democratic deliberation could happen where you engage scientific organizations and communities, you engage other international organizations and you organize a series of debates and a series of contributions both scientifically and ethically to figure out what is the state of the science? Have people like Katrina and Thomas and Ping talk to us and really be realistic about where are we? What are the applications that are possible? What are the applications that are truly science fiction? And get the science right and get the science right and then translate it in a way that is accessible to the public because the problem is too rarely does the science actually become accessible to the public so that they can engage in the process of democratic deliberation. Instead we have sensational headlines that say things like designer babies are now possible. What is a designer baby? We've been designing babies since the beginning of time and not at all, right? I mean so much of this is well beyond our control and will remain well beyond our control but we make it accessible to the public. This is the role of people like Joe as well on NPR to be able to share what the scientific results are in a way that's accessible and then organize a series of debates and conversations and collaborate on coming up with what we think are a set of standards, right? We have the charter on human rights. That's a great vehicle for trying to understand what basic principles are that can then be applied to other organizations. We need similar types of international leadership to have a charter on what we think is appropriate and inappropriate for technologies that truly impact not just this generation but many generations to come. So I think there is a process. It isn't easy but it does require international leadership and engagement of all of the relevant stakeholders. Okay, somebody behind me, that's very bad. I'm Jessie from software industry which is very non-related to this topic but there's something I'd like to ask is at the beginning when I saw the first question about whether you are excited, worried, or neutral, I select a neutral but actually as the conversation goes I've become more worried. The reason is I just imagine about the future if we can modify a genome. And there are a lot of things like for example within a country the rich people they may pay to modify their gene to be better or smarter and then even between countries countries can use that as a weapon which they can make their people better. So maybe this is a really kind of a crazy idea but I think I'm just really a little bit worried about it. I want to see the views from the panel. How do you guys think about that in the future? Do you think she's right to be worried? Yes, she is right to be worried and be cautious. We don't know for the many of the mutations or the consequence if we really do the editing in the Gemini cells or the M-Droid. That's very different from somatic cells. Somatic cells, you only change the individuals but Gemini cells or M-Droid, you talk about you know different generations could be change a human being, change our evolution. We have big reason to worry about. I think that the nature of your concern is exactly why Nina is saying it's important to have that broader debate. I think some of the ideas of what people are worried about are really much more in the realm of science fiction. Could you, some of the things that you described but I think that the concerns are very legitimate and very real and that is why I think this forum and session is here and that there are gonna be a lot of different points of view on that that have to be considered. I think that's also why those of us that are working in this field are not doing that kind of germline modification. We're really focused on helping people who have those serious diseases that are in need of treatments but it's great to have this kind of dialogue now particularly when it's more in the realm of science fiction because you wanna have the debate in a thoughtful, deliberative way and it does, it takes time. It does take time. Yeah, I agree. I mean, I think if you, with what's possible today, no, I'm not worried about effects happening today, right? I don't think the technology is that far advanced yet but if you take it to the extreme where we have unlimited both breadth and specificity of power to manipulate our own genomes you can imagine, one can imagine a few different layers of concern. One would be unintended consequences. We don't know what one change, how that might ripple through the rest of the genome and how that may impact health of that person and subsequent generations. Another sort of category is potential loss of biodiversity. One could imagine that if it's on TV that everybody should go for this new mutation in this gene and then everyone goes that way, could that open up a narrowing of biological diversity that could have massive unintended consequences like disease proliferation and less of the populations protected. So these are things that are far, far off in the future, not possible today but one can imagine that. Then of course, the third one is what about liberty and individual choice and privacy and whenever there's technology like this that can be so powerful, who's really making the decisions, can somebody be coerced, are there inequalities that can come out of this kind of technology and that's sort of a third new bucket of concern. So sure, there are theoretical concerns that I think we'll have to look at as we move forward and as the technology advances, not necessarily a concern today but something to keep in our sights for the future. Sorry, as you were talking, I just thought something spun into my head. So there is a big debate, even though what you guys are talking about is not particularly contentious about repairing damaged genes but some people don't like any genetically modified organisms whatsoever. And I wondered if people would be okay with somebody who was genetically modified because we're discussing labeling in this country of labeling food that's genetically modified so that people have to wear a GMO on their lapel or something like that. Anyway, maybe not. Let's go ahead. My name is Richard Jefferson. I'm a professor of biological innovation in Queensland and founder of a social enterprise called Cambia. I think we might actually be teased by one of the comments you said about evolution in realizing we're looking at angels on the head of a pin here because we haven't defined what biological identity is and there's one of the largest revolutions in biology ongoing as we speak and a little spraking for a colleague, Rob Knight, is speaking later today about in the being human area and it seems that there's a new theory of evolution that's emerging called the Holo Genome Theory which basically recognizes that most of what makes us what we are is microbial and it is constantly changing anyway. So thinking of ourselves as a fixed, persistent element is part of the misunderstanding of evolution that we've endured for the last 150 years and now that we're discovering that the vast majority of all metazoa, including ourselves, are microbial and these are not adjuncts. They are what make us what we are. We're already doing genome editing with lunch and so it's fascinating to reconcile the nature of biological identity and whether that influences very much our comfort zone and our familiarity which affects very much the ethical considerations. I want to respond to that. I think that's a wonderful comment and contribution whether it's the microbiome that's changing all the time and the way we conceive of ourselves as human or the mate selection that we've been doing forever that's already a form of genome editing. We're doing genetic modification all the time. We're doing changes that are heritable all the time and it's figuring out if there's a difference in degree or kind and what the ethical implications of that difference in degree or kind might be but also recognizing where we are and what it actually is touching upon. So this idea of being human, the challenge that people feel that it's somehow unnatural. Most of what we have done since the beginning of time is unnatural in some way. I mean it's doing things, every time you take a medicine it is unnatural in the way that it changes disease or it extends our lifetime. So I think it's absolutely right to put those types of concerns into a broader context and understand what is it that we're really talking about? What are the concerns really? And that's part of the dialogue that needs to happen and I think that's a really nice way to capture what some of those concerns are and some of the challenges to the traditional mantras that have been advanced that guard against doing these types of changes. Just encourage people to be familiar with the work of Rob Knight who's here, exceptional scientist to talk about being human in an hour or two and also look on Wikipedia about the holo genome theory. It's really quite an impressive reconsideration of evolution. Well, we humans have had multiple takedowns throughout our lives and historically of understanding who we are, where we are, what our importance is. And yes, I still, I'm very proud of my bacteria. So I'm always saying nice things about them. Any other questions from, yes, there's a question back there. Eric Daly from Beijing Review. I was just wondering, I think all the talk of prudence and deliberation is very admirable. But I think that if you think of a country where scientific prowess is quite high but you might not have the ethical constraints, the first country to tackle genome editing on an embryo and to derive benefits from that, might the question and say the US where we have more deliberation not be phrased as a matter of saving people's lives? In other words, will the government be compelled to go ahead and to catch up with a kind of a, I won't say arms race, but kind of benefits race, not be started in that case. Thank you. Yeah, well, I think that, yeah, well, maybe I should ask the panelists. But if somebody comes along and said, look, I'm here today because my beta thalassemia gene, which would have been lethal, was knocked out of my embryo. I mean, we do it in a passive way by selecting embryos that don't have the disease. So this is a more active way. I mean. It's a pre-implantation diagnosis. And so I don't want to dismiss your question. I think that it is one that has to be part of this consideration, but there's a little bit of what Nidu's saying. Among the technologies that exist today, if you are concerned about a particular genetic mutation for some of them, you can assess embryos prior to implantation and then only select ones that don't have that particular mutation. Now that is not available to everybody in the world right now. So there is a disparity there. But frankly, there's also a disparity in nutrition and education and a lot of other things that are profound in terms of creating a healthy human being. And so, yes, there is that concept, but I think there's also a wider range of disparity of technologies that support and enable optimal health. Well, we've actually reached the end of the time we have and what I'm just realizing and feeling quite terrified about is I'm supposed to summarize our discussion. And really, it can't be summarized except in the sense, there are parts of it that can be in the sense that there are things that there's general agreement that we can pursue without risking ethical conundrums or complaints. But I think the question is a very provocative one because somebody said that people would be in favor, people in Congress would be in favor of therapeutic cloning. This is in the United States. If they could cure baldness. And so there's a certain question in my mind if you can show a clear cut benefit from something that still has an ethical baggage associated with it, it's gonna complicate the discussion quite a lot. As a member of the media, the simplification of I'm cured will compromise the more thoughtful discussion that an ethicist or a research scientist would bring to the topic. So in conclusion, I think this is going to be a discussion that's gonna go on. But I do think it's important to remember what's real and what's hypothetical as you were calling it, what's science fiction. And right now, we do have the luxury of some time to talk about this topic because mostly the things that we're most scared about are science fiction at this point. So I think with that, I'll say thank you very much to the panel and thank you for the audience for your great questions. Thank you.