I have been a guinea pig in my parents’ amateur research – geneticist

SS: So when you say that genome editing is on the brink of explosion, what exactly do you mean?

GC: Well, it is both reading and writing of genomes which are intimately connected, are on an exponential brink of explosion. And they are literally exploding. If you follow the cost, curves are… They're doubling in months, not years. They’re doubling faster than the Internet and the computing is. And that changing cost structure and the impact it has on things that we care about meaning the health of our children and ourselves - that probably means it's not something to ignore. 

SS: Well, I mean, I've heard that you can actually conduct genome engineering at home. You don't even have to be a scientist to do that. You can just order a desired DNA sample over the Internet. It's like ten dollars. Get it delivered. Inject it. If that's the case, why don't people modify themselves time to time?

GC: Well, you can also order all sorts of chemicals at home too. But most people don't have the know-how or the unmet need. OK. But people do inject themselves with gene therapies. There are a few known cases and probably…

SS: On an amateur level you mean?

GC: On an amateur level. People inject themselves with maybe some little assistance. It’s outside of the standard biomedical research practice. 

SS: Do we know what that has resulted into? 

GC: I think not much has come of it because for most impactful medicines to take root, they have to go through clinical trials. Ideally, double blind, placebo controlled randomised clinical trials. And that is just starting. And the amateurs are not likely to influence that. 

SS: Would you be open to experimenting on yourself? I mean, would you inject a gene fix into yourself and take a risk for the sake of science? 

GC: Yes, I mean, I am. I have been a guinea pig in many research studies ever since my mother or father essentially did amateur research on me, which was probably within the law. But I would want to participate in a study that is a randomised clinical trial, something that has some chance of producing reproducible and useful information, not something where it's one of uncontrolled studies where I'm just doing it to myself. 

SS: So do I understand correctly that you've already been subject to experiments within the…

GC: I've been a research subject in experiments most of my life. 

SS: What kind of experiments? Like what? How did it change you? What happened? 

GC: For example, as you know, the more formal ones started in college, those involved in psychological experiments. I was involved in nutrition experiments, and I'm one of the main research subjects in the personal genome project since the very beginning. It was a study that I started.  

SS: So have your eyes become blue after that or they've been like that ever since you're born? 

GC: I am not aware of how the experiments that can affect eye color other than putting on contact lenses. But I probably would not participate in that kind of study because I don't see a tremendous benefit. 

SS: Serious gene medical therapy is now very expensive, right? The price tag for the recently approved medication that can actually somehow cure inherited blindness is about one million dollar. And that's something that 99 percent of the population can't really afford, right? Does it make sense to produce something that most of the people would never be able to buy? 

GC: Yes, a million dollars is the cost for not just for gene therapy, but for a variety of Orphan drugs under the Orphan Drug Act in the United States - things that affect rare diseases. I've spent most of my career bringing down the costs of technologies, both reading and writing genomes and now therapeutics. And it's certainly our ambition, my ambition to bring down those costs. You don't want to deprive people of lifesaving treatments if their part of society can't afford it. But I totally agree that the goal should be to make treatments nearly free. And by the way, gene therapy is not the only way of treating some of these diseases. Many of these diseases can be prevented by genetic counseling, which is not a million dollars, but it's closer to a thousand dollars.

SS: But let's talk about the genetic editing a little bit to see how it’s… Right now it's expensive. I mean, I don't know, maybe in 10, 20, 30, 50 years’ time, it's going to be affordable for everyone. But right now, it is very expensive. Do you think gene therapy can cause this sort of a surge in DNA and create a genetic racism divide? I mean, already right now, there's such a huge gap between rich and poor, right? So if the rich people are the only ones who can afford those kind of things, I mean, they will be even healthier, they will never die. And then you have the rest of the world that is just going to be…deteriorating. Do you see my point?

GC: I do. I worry about the same thing.

SS: Do you think it can create that DNA racial divide? 

GC: No, I don’t. I worry about it, but I don’t think… I'm not predicting that it will happen. I worry about it to prevent it. And the way I think we prevent it is... Well, first of all, it's not racial. It's rich versus poor. 

SS: OK. Different casts of people like rich people versus poor people. And they're always happy and healthy. And the cast of the poor, which is unhealthy and dying like they are.... 

GC: Right. My point is that the solution is not to say that it's inevitable that there will be this divide. It's to say, what can we do to bring down the cost and get education and equitable distribution? And we've done that for some technologies. For example, smallpox affects everybody in the world — all some point five billion people. There is no one that is exempt from that benefit. We should have the ambition to do that for every subsequent medical technology. And I think we can do it… probably quickly, not 50 years from now, but much faster than that. 

SS: So when you say ‘I'm the one working on these things and I'm worried and I want to prevent all of this’, what exactly do you do to prevent that from happening? 

GC: What I do to prevent it... To accelerate the arrival of equitable distribution of new technologies is to bring the costs down. So we've worked to bring the cost of reading genomes down by three million fold and the cost of editing is plummeting at the same rate. I believe that most genetic diseases can be addressed by gene therapy, which is more a reading and education problem than editing problem. Many and most of these can be addressed just by knowing your genome. 

SS: And then another huge topic is age reversal. And you've said it's a matter of maybe 10 years’ time; that this is going to be really tangible in terms of results. What exactly do you mean? I mean, are we going to get rid of wrinkles, our bodies are going to be more toned all of a sudden, when we're 60 we are going to look like we're 20? Or are you talking about internal organs like our heart is going to get better, like when we're 20, or blood vessels? I don't know. 

GC: I don't consider wrinkles a public health threat.

SS: That's because you're not a woman. 

GC:  I mean, I realise the society has biases that can result in difference, different economies for the aged, and therefore having a lower income could result in poor medical care. So it is a health threat. That said I think what we're aiming for age reversal and it’s not necessarily a decade away. We've already had evidence for aging reversal in several different ways and in mice. And so then we're turning those into multiple gene therapies and testing it in pre-aged mice and in pre-aged dogs and then eventually human. And the goal is to make us more resilient to damage to our various organ systems and to deal with disease of aging by hitting at the core that makes us less functional as we get into our 80s and 90s…

SS: Age reversal right now has nothing to do with the way we look, it’s something about making our system, our organism more stable, healthier and resistant to diseases.

GC: It could affect the way we look. But that's not the objective. The objective is to hit on major organ systems that really affect your health, like your immune system, your heart, prevention of cancer and so forth. 

SS: It's gonna be a big topic, whether it's gonna be only about health or the way we look. Should gene editing be limited to just curing illnesses? Because I'm thinking is messing with DNA worth risk for me - having a bigger muscle or blue eyes?Is there a line that we shouldn't cross when it comes to gene editing and medical gene editing?

GC: I think we tend to draw lines in the wrong places. It doesn't mean there isn't a line or maybe it’s a blurry line where source like, for example, driving a car: there is no real physical line at 55 miles per hour. That is a law that we pass at an arbitrary place along a continuum. It is unsafe to go at 100 miles an hour. But we set the line at fifty five. And I think the same thing is true if you really want blue eyes and wear blue contact lenses. We're not going to ban blue contact lenses. If you want to have a different color hair, you dye your hair. Most of the things we want to augment, change ourselves for fashion statement or augment ourselves… like if we want to be faster, then we get a fast car or a jet - we don't need to have faster muscles, that doesn't help the average individual. It's adequate that we can get from one place to another faster than our ancestors ever imagined. 

SS: So do I understand correctly that for you personally, the line that shouldn't be crossed is between genome sequencing being used for greater purposes like health purposes, but definitely not for  something that would change the way you look physically from the outside? Is that fair understanding of what you’re saying?

GC: I meant that the line should be drawn for safety and efficacy both short and long term. We want to make sure that what we're doing doesn't impact future generations in a negative way. It can affect future generations, but just not in a negative way. And sometimes that takes a great deal of discussion and research to figure out what that means. But I would not draw a line at augmentation or appearance because those do affect your income and hence your health. And they can be harmless, and they're already done. And so if you're going to ban those things, you should ban all means of achieving them. You should prevent society from being discriminating based on beauty rather than a particular way of doing it. So we should ban beauty products of all sorts, not just one sort. 

SS: Well, OK. So you're not very categorical about this, but then other scientists and medical community experts that I've spoken to, they're pretty much against the genome sequencing being used in terms of enhancing physical appearance. And then I always ask them why is it OK to get a boob job, but it's not OK to do that with the question of gene editing? What’s the difference?

GC: Good question. What’s their answer?

SS: Different answers. But what would you say to that?

GC: Yes, I would say that there are reasons to ban the entire practice – across the  industry on the earth - because it does consume resources while I'm spending a lot of money dealing with things that don't affect my health and don't affect my performance so that I won't be discriminated against in a society — that is based on appearance. I could be spending those resources on something else, but those resources include all manner of cosmetic surgery, of skin and hair care products and so forth. If you don't like the loss of resources, then you should apply it across the board. I'm not saying that wish. It's not necessarily a harmful thing. Maybe we can afford those resources, just like we afford resources that are spent on entertainment and so forth. There are reasons why we want to look our best.

SS: Because plastic surgery also started with medical purposes. It was for injured soldiers or burns or kids that will be born with birth defects, etc. And now it's an esthetic industry that feeds off people's insecurities. 

GC: That's correct. Yes.

SS: So that could happen with the genome sequencing as well, right?

GC: That’s right. We don't want industries profiting from people's insecurities and we should ban every kind of... I'm not saying we should ban them. I'm saying if we don't like that waste of resources and that abuse of insecurities, then we should ban it. I’m not saying what my opinion is. I'm just saying “if the”, right?

SS: So always when we're talking about the gene editing and the effect that it can have on human health, is this something permanent? I mean, if gene edits someone, for instance, does this mean that my child does no longer inherit a disease that I've just edited? Or is it just applicable to myself? How does it work? Can you modify your child while it's still in your womb? 

GC: Essentially all gene therapies that are in clinical trials right now are on adults or children, and it's not inherited. You could make inherited changes. That's technically possible. It's not yet advanced enough that it's up for approval. You'd have to have a good reason to do it. Because there are some things that cannot be corrected easily in an adult or a child, so you need to do it earlier. The earliest and the most preventive would be either by doing genetic counseling, avoiding gene.... 5 percent of children that are born with serious genetic diseases. This can be avoid by genetic counseling, or if people get married or want to have their own children and they ignored the genetic counseling up to that point, then in principle you could do something on their sperm or egg that would prevent them from passing along that disease. But the most cost effective and probably psychologically least traumatic is to do it at the matchmaking stage. 

SS: Because I'm thinking that sometimes people with mental diseases don't know that I have mental diseases and it comes up with age, for instance, schizophrenia. I mean, if you could technically prevent that from being inherited into your kids, is it something that's really far away?

GC: I don't think it's beneficial to dismiss it as being close. I mean, it might be close in time. Not necessarily far away. Because if we're going to deal with it, we need to not underestimate how quickly it can arrive. I think if we had a way of avoiding extreme cases of schizophrenia by genetic counseling that would be very advantageous. If we could do it with any kind of preventative medicine, it would be better and probably better than a cure, or equal to a cure.

SS: I want to talk a bit about your new start of Nebula. That's marrying DNA information and blockchain technology. I mean, what's the point? I mean, you hope to encourage people to get their genome sequenced DNA code written out and then share it with the rest of the world?

GC: Well, the whole point is that they can avoid sharing their whole genome with anyone, including their physicians, matchmakers, researchers. What they can do is give them part of what they need in encrypted form and combined with many other people's comparable data such that no one ever has an identifiable piece of anybody else's genome. So that level of security is just now becoming evident how you achieve that. And I think it would reassure a number of people about things that they would like to share, they can now do it securely. In addition, there's a way of compensating them for participating in something to save society a lot of money. So, for example, if 5 percent of children are born severely, genetically damaged and you can get everybody their own genome sequenced and get secure software that allows them to find out who would be a good match for them, who would not be before they get married, you could reduce abortions. You could reduce the million dollar costs of dealing with these 5 percent of damaged babies. And that should be, you should be able to return it to the people who got their genome sequence. So rather than paying thousand dollars for genome sequence, we should pay you a thousand dollars to get your genome sequenced so that society avoids  having these severely affected children.

SS: Do you ever come across or get in trouble with people who maybe think that you are sort of overstepping humanity's boundaries because you're working with something so big, something bigger than us? You know, like some would even say that you're playing with the God. Do you come across that?

GC: I think that it is a risk, but I think in my particular case people see that I'm trying to engage in ethical discussion, discussions of the ethics, safety or long-term planning, trying to have two way conversations with broad set of people —  like this conversation. And I think they respect that and they don't think that I'm playing. I'm working hard and I'm working as an engineer would do - a safety engineer, more than anything else. So I think that, I'm not trying to reassure anyone, I'm actually trying to raise the alarms as quickly as I see them and I'd see them sooner because I'm deep in the trenches working on the next technologies.

SS: Do you feel like maybe society should have certain constraints when it comes to cutting-edge scientists like you or people like you just because you could be for better or for worse changing the way humanity works, the way humanity is? This is not a joke.

GC: Well, yes, I have a concern about new technologies and I think society should, and I try to help them get engaged in those concerns. But we also should have concerns about doing nothing. Doing nothing is extraordinarily risky in a world with some point five billion people and a whole series of ancient technologies that are not necessarily suitable for tomorrow.

SS: You know, there are some people who believe that we are the way we are. And there's a reason for it. And however many lives we get —  one or twenty five thousand — we should go through each life the way we were born. What do you think? I mean, I've read in one of your interviews you have this special condition called narcolepsy. Would you want to change that in yourself or would you want to keep it the way you are?

GC: Well, I don't think we do stay the way we are born. I mean, we in addition to a...

SS: You naturally progress, grow. 

GC: I don’t think there's anything natural about... I mean, it depends on your definition of nature and natural. I mean, some people define nature as that which is not affected by humans. Well, obviously, humans are affected by humans. We put on clothing. We drive cars. We are not accepting our nature or are not accepting our ancient nature. That said when I changed my narcolepsy, not at our current state of knowledge.In fact, I think one of the things we need to be very cautious about is we need lots of diversity. We need people that have problems that they can live with. When I was younger, I had serious dyslexia, narcolepsy, and I have a bunch of things wrong with me. But they were tolerable. And if we eliminate people, we should eliminate cases where it's intolerable, where they would prefer die or they'd be in great pain for the rest of life. But things that are tolerable - it's part of the richness that makes us great. And I am willing to accept the burden of my particular problems. And we might even need more diversity rather than less. 

SS: All right, Professor Church, thanks a lot for this wonderful insight, for this interview. Best of luck with everything.

GC: OK.

SS: Thank you. 

GC: Thank you.