Gene Editing: A CBC Interview of Margaret Somerville and Julian Savulescu

The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu

Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.

Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.

JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?

JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur. It could also be used to create embryonic stem cells with precise changes that might make subsequent stem cells, cancer-fighting stem cells, or even stem cells that fight aging. It could also be used to create tissue with say, changes to understand the origins of Parkinson’s disease or Alzheimer’s disease and develop drugs for the treatment of those diseases. This is what I’d call therapeutic gene editing, and because it stands to benefit millions of people who die every year of painful and debilitating conditions, we actually have a moral imperative to do it. What we ought to show more concern for and perhaps ban, is what might be called reproductive gene editing – editing embryos to create live-born babies that are free of genetic disease or perhaps more resistant to common, late-onset diseases or even enhanced in various ways. If we’re concerned about those sorts of changes in society, we can ban reproductive gene editing, yet also engage in the very beneficial research using genetically modified human embryos to study disease.

JB: And Margaret Somerville, what concerns you about this technology? 

MS: Well, I’m interested in the division that Julian makes between the reproductive gene editing and what he calls the therapeutic gene editing. I’m a little surprised that he might not agree with the reproductive gene editing – that is, you would alter the embryo’s germline, so that it wouldn’t be only altered for that embryo, but all the descendants of that embryo would be changed in the same way. And up until – actually, up until this year, there was almost universal agreement, including in some important international documents, that that was wrong, that was ethically wrong, it was a line that we must never step across, that humans have a right to come into existence with their own unique genetic heritage and other humans have no right to alter them, to design them. Julian uses the term genetic engineering – to make them, to manufacture them. Where we would disagree completely is with the setting up of what can be called human embryo manufacturing plants, that is, you would create human embryos in order to use them to make products that would benefit other people, you would use them for experimentation, for research. And Julian’s right, we could do a great deal of good doing that – but there’s a huge danger in looking only at the good that we do. And what we’re doing there is we’re using human life as a product. We’re transmitting human life with the intention of killing it by using it as a product, and I believe that’s wrong. I think that human embryos have moral status that deserves respect, which means they shouldn’t be treated just as products.

JB: Julian Savulescu, I’d like to focus a little bit on gene editing and its use in the way we fight hereditary diseases like cystic fibrosis or Huntington’s disease. How could gene editing change that fight? 

JS: Well, there’s two ways. Can I just say that though I fully respect Margo’s view on the embryo, that view is not shared by everyone, and in fact, countries like Canada and the United Kingdom allow certain forms of embryo research for medical purposes, and therapeutic gene editing would be similar to that. Now, in terms of how we could use this to treat a disease like cystic fibrosis – first of all, you could use it in a therapeutic way. You could try to understand why such mutations cause the sorts of deficiencies in proteins and metabolism that they do and perhaps develop very effective drugs. That would a be a therapeutic form of gene editing, but you could also, as Margo correctly pointed out, use this to correct the gene in the embryo and correct every single cell in that human being of the cystic fibrosis mutation so it wasn’t passed on to their children, and that individual didn’t suffer from cystic fibrosis. That would be reproductive gene editing, to correct a single gene disorder. It could be used for Thalassemia, it could be used for Huntington’s disease, certain forms of breast and bowel cancer and even to reduce the risk of Alzheimer’s disease. So that way, you would be producing a live-born baby that would have had cystic fibrosis, would have had a lung transplant at the age of 20 or 30, and would have died in his or her early 30s – but that individual instead will be perfectly healthy and indeed their children will be perfectly healthy. And though Margo is absolutely correct that it has been banned around the world for many years, I frankly fail to see why it ought to be banned if this was safe,. Surely the best thing if I had cystic fibrosis would be that somebody not only cured it, but cured it from the moment that the embryo that became me was conceived.

JB: So, Margaret Somerville, if we could edit human genes to get rid of or reduce the risk of diseases like cystic fibrosis and Huntington’s, isn’t that something we should at least consider? 

MS: Yes, but then having considered it, I hope we would reject it. And really, what Julian is doing – and it’s the hardest case to answer – Julian is making a very strong case that at the individual level we could use this as a tool to avoid really awful and serious suffering, and that is the strong case for doing this. The case against it is much harder to make, and it’s much more general, but it goes like this: that as human beings, we’ve got a unique identity, and that identity, a very important part of it, is our biological inheritance, our genetic identity. And if we’re designed by somebody else – and no matter how much good you’re saying you’re going to do, this is still designing a human person – well, that goes to two of the primary rights that we have as human beings. And this is actually the German philosopher Jürgen Habermas’ approach to this. He said that you have to have non-contingent origins, that is, you have to come into existence through chance in order to be free, in order to feel that at any point in your life you can go back and remake yourself. And if somebody’s designed you, then you’re not free. Your right to liberty has been infringed. And he also says that if you’re designed by somebody, you’re not equal to the designer, and so he says that the right to equality is infringed. We look at it our rights to liberty and equality as the basis of our democratic society and it’s contrary to everything that we believe about individual people and who they are. And another philosopher, the late Hans Jonas – I love the way he put it –  said we’ve got a right to our own unique ticket in the great genetic lottery of the passing on of human life. And so this is why I object to this. I mean, it’s a momentous step that for the first time ever in the billions of years it’s taken for us humans to evolve, to have the genes we’ve got today, suddenly other humans can change those.

JB: Julian, how do you respond to that? 

JS: Look, it depends on your worldview in part, and it depends on your conception of freedom. So on a Darwinian view of who we are, we are simply the result of a random set of mutations under various selection pressures and we happen to have emerged as a species not designed for anything other than surviving long enough to reproduce. And we have wide variations in genes. The genes for cystic fibrosis, which cause severe disease, Huntington’s disease, are not gifts from God, they’re essentially mistakes in nature or they’re simply variations in nature that didn’t threaten our survival as a species. Now if you believe that we’re the design of God and we’re somehow interfering in God’s will, then you may not want to change people’s genomes. But for people like me who take a post-Darwinian view, the genes that we have are not some kind of special gift or selection, they’re just what nature happens to allot. And sometimes the hand that nature allots is much worse than at other times, and we now have the knowledge and ability to correct that natural inequality. And I don’t see how you’re more free if you’re born with cystic fibrosis than you are if you’re born without it. In fact, that’s why we have medical treatments, and if we had a drug that would cure cystic fibrosis on day 1 of life, we would administer it. And I fail to see how it can make any difference to how free we are or how open our futures are, whether that’s given on day 1 of life, day 10 of life, day 100 of life, or at the very moment of conception. And frankly speaking, I also think that it increases your freedom. If you have to spend most of your life in hospitals, if you have to have a lung transplant, I can’t see how that is increasing the openness of your future. You’re giving people a greater range of opportunities by using the fruits of science to overcome natural biological disadvantage, and I think we should use that knowledge.

MS: I think though, Julian, what Habermas is talking about is an innate freedom that means that nobody else created us, that we are uniquely who we are and we weren’t designed by somebody else. And the other thing that would come from your line of argument, that we’re more free if we can be designed in some way, well, you might say that you’ll have a better life if you’ve blonde hair or blue eyes or you’re taller or you can be a champion basketball or hockey player because somebody gave you the genes to do that when you were an embryo. And so once we step across that line and say it’s acceptable to design, to engineer another human, it’s very difficult to draw a line, to say that’s wrong.

JS: I am familiar with Jürgen Habermas’ work on this, and also Michael Sandel’s, and both Habermas and Sandel draw a distinction between treatment and enhancement. Both of them accept the use of genetics to treat diseases, so in fact, I believe that Habermas and Sandel, even though they’re opposed to the use of genetic engineering to improve human beings, they’re not against the use of it to treat diseases like cystic fibrosis. But getting on to your point about whether your parents may think that you’ve got greater range of opportunity by being more intelligent or more beautiful or more athletic or whatever quality you want to refer to, whether they constrain your freedom is not determined by the genes that you started life with. That could happen by chance. By chance, you could be more or less intelligent. What would constrain your freedom is if what they do is hyper-parent you, as Michael Sandel puts it, if they force you into eight hours of music lessons, if like Lang Lang’s father they threaten you and say that you should commit suicide if you fail to get into the Chinese Conservatory of Music. That is indeed a terrible thing to happen to child. It’s got nothing to do with starting life with a better range of genes, it’s got to do with your behaviour as a parent which is subsequent to the genes that you’re born with.

JB: Margaret Somerville, I’d just like to get back to a point that Julian made a little earlier. Ethically, what’s the difference between treating a disease with a drug and treating a disease at the genetic level? 

MS: Because I think at the genetic level, you go to the intrinsic reality of who that person is. With a drug, it’s an extrinsic intervention that you’re trying to help the person to become what they want to be, whether it’s free of a disease or to lose weight to whatever it is that they might want to be, and I think there is an inherent difference there between intervention on the intrinsic reality of a person and an extrinsic intervention.

JB: But Margaret, couldn’t it also be argued that we have an ethical obligation to future generations to remove those genetic markers that could lead to diseases if we have that ability? 

MS: Well, my argument would be no. I would say that we don’t have an ethical obligation. In fact, I think that we’ve got an ethical obligation not to step across the line of designing other humans in the future. And that’s what we’re doing here, and that’s why, for example, the Assisted Human Reproduction Act in Canada makes it a serious crime – ten years in jail or a 500,000 dollar fine to make any alteration to a human embryo that could be inherited by that embryo’s descendants. As Julian agreed, we’ve had almost universal agreement that this was wrong, this was inherently wrong, which means that no matter how much good it could do, we mustn’t do that. And we made those decisions, it’s interesting, when it wasn’t possible to do it, and it became possible in April of this year, and now everybody says, oh, well, maybe we should do it. And so it’s the sweetness of the science and the scientists who want to go ahead with this. I also think we have to look at the issue that it could be a huge commercial industry.

JB: I’d like to get Julian Savulescu to respond to that now. 

JS: Yeah, I think it was very revealing that Margo said that changing somebody’s genes was changing something intrinsic about themselves. I’m not my genes. My genes simply code for proteins. I’m the product of my choices. I’m the product of my parents’ upbringing, and I’m also the product of my genes – but whether you change a protein or a gene, it’s not changing me. And I think that comment reflects the kind of genetic determinism that many people have about the role of genes in who we are. Genes are very important parts of ourselves, but they are not the same as us, and this conflation between us and our genes is a deep mistake. With respect to the laws banning this kind of technology – they are pervasive, and I believe that they’re wrong. At the moment, it would be wrong to attempt gene editing of any embryo because we don’t have enough data about safety. But if it were shown to be safe, it would be right, as right as giving vaccination or as right as giving an antibiotic for a bacterial infection. In fact, if I were a child born with cystic fibrosis and my parents had not chosen to use gene editing to correct my cystic fibrosis, I would consider it very wrong – first of all, I’d be very angry, and secondly, it seems to be that’s a kind of parental abuse. In the same way as if a parent were to deny the child antibiotics and the child ended up with brain damage from meningitis, those parents would be guilty of child abuse.

MS: Julian, can I just reply to you that I’m not a genetic determinist or a genetic reductionist. I agree with you that we are much more than our genes. But that doesn’t alter the fact that our genes are enormously important, as you agreed. But I just think there’s a difference between giving somebody medicine to help them to overcome some disease and altering that very fundamental nature of the person.

 JS: There’s no difference in principle between biochemical interventions and genetic interventions. Altering a gene that codes for proteins that create metabolic cycles and interactions is the same as altering those metabolic cycles with drugs or proteins directly. It is correct the changes are passed on to the next generation when they’re genetic, as it is correct that historically such attempted genetic interventions have been associated with mutations and cancer and mal-development and so they’re riskier. That is why we need good science, but in principle, if the effects are the same, I can’t understand why it would be acceptable to give a drug and not completely eradicate the disease and eradicate the disorder by correcting the underlying genetic abnormality.

MS: Because just because the effects are the same, doesn’t mean that it’s right to do both the interventions that will lead to do those effects.

JB: I’d like to ask both of you, and Julian, I’d like to begin with you – given how hard it is right now to get approval for a genetically modified apple, or a salmon, how difficult is it going to be to ever even imagine a day when we’d get approval for a genetically edited human?

 JS: That’s precisely why I drew this distinction between reproductive and therapeutic gene editing. I think it’s going to be very difficult to get the public to accept the use of gene editing of embryos, though I believe personally it’s right, if it’s safe enough – but we shouldn’t let that fear stop us doing the research using these techniques to try to understand disease and to develop treatments that people do find ethically acceptable. Now, if some parts of the community don’t find embryonic stem cell treatments for life-threatening diseases acceptable, that’s understandable, but as a community, many people do. And I think the important thing in this whole issue is not to allow what will be a very widespread resistance to genetic modification of human embryos to stop research at this early stage.

MS: You have also got the issue that it’s not just eliminating diseases that we’re talking about here. For example, Lee Silver from Princeton quite a long time ago predicted that with genetic engineering we would have the ‘gene rich’ and the ‘gene poor’, and that would be a source of inequality and perhaps discrimination just as much as economics are at the moment. There’s all sorts of social and policy reasons and concerns that have to be taken into account here. It’s not just the simple matter of correcting one horrible disease in one embryo, because the precedent that we set in saying that we may do that has much wider implications.

JS: Well, two points on that. Firstly, if you do the therapeutic gene editing, you may develop drugs to prevent Alzheimer’s disease, you may develop drugs to treat cystic fibrosis, and those drugs may increase the difference between the rich and the poor, but drugs in the long term can turn out to be very accessible. Secondly,  at the moment, the real division is natural. People with cystic fibrosis are already at the bottom end of society. They are the ‘gene poor’ that nature creates. If you’re using gene editing to correct genetic diseases, all you’re doing is correcting inequality. So I fail to see how this kind of argument applies to genetic engineering for diseases.

JB: I’d like to get a brief summation from both of you just to wrap up. Margaret Somerville, as we move forward, why is it important for us to be cautious with the way we use this technology. 

MS: The analogy I’d make is to our physical environment. We have new technologies that we’ve used in our physical environment, and very recently, we’ve come to the awareness that it’s not indestructible and that we can do damage that is irreversible. And we’ve now recognized, as the conference in Paris this week is talking about, that we have to hold our physical ecosystem on trust for future generations, not to lay it waste, not to leave future generations worse off than we are – and hopefully better off. And I think we can say the same about what I call our metaphysical ecosystem, the values, beliefs, attitudes, principles, stories that we tell each other and buy into to form a society, that we also have to hold on trust. I believe this idea, this area of actually designing future humans, and that’s what this about, contradicts what we need to maintain as the base of our metaphysical ecosystem – that is, respect for human life, in general, and respect for every individual human, and that includes human embryos.

JB: And Julian Savulescu, why is this research that we should embrace? 

JS: Nature does not deliver human beings who are necessarily healthy, does not deliver human beings who are necessarily social, does not deliver human beings who are necessarily happy. There is vast natural inequality. The most extreme examples are genetic diseases. Science now is beginning to allow us to understand why that occurs and how we can intervene. We ought to use that knowledge ethically and we ought to draw important distinctions. It’s not a question of gene editing, yes or no, it’s a question of what kinds, in what circumstances, and with what limits. The important distinctions are between therapeutic and reproductive gene editing, between gene editing for treatment and for enhancement, and for gene editing to correct inequality versus to increase inequality. In my view, we need a mature ethics that enables us to use powerful science such as gene editing, but also artificial intelligence, the internet, nanotechnology. All powerful science has profound risks of abuse, and historically we have abused science. Today we need to develop an ethics that enables us to harvest the fruits of science while also preventing abuse.

JB: Thank you very much, both of you, for joining us.