Gene editing technology gives us the ability to change our DNA – removing, adding and replacing parts of our genetic code. These technologies have been emerging and improving for some decades, but since the development of CRISPR-based editing technologies, our capacity to edit our DNA has become both more accessible, more accurate and consequently, more powerful. Gene editing could be used to prevent genetic diseases but also alter traits like height and intelligence, presenting both legal and ethical issues.
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A lecture by Imogen Goold recorded on 17 April 2023 at Barnard's Inn Hall, London.
The transcript and downloadable versions of the lecture are available from the Gresham College website: https://www.gresham.ac.uk/watch-now/gene-editing-law
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Hello. So welcome. Today is my third and final lecture in this series, um, of lectures in Medical Law and ethics. Um, I'm gonna talk to you about new gene editing technologies, these technologies that give us the ability to change our DNA, so removing it, adding it, replacing parts of it. Um, I'm not gonna make this particularly legal. Some of my previous talks have been quite legalistic. This one, I really wanna talk to you mostly about the ethical issues and the considerations that we might want to think about, um, when we're thinking about what to do, um, with this new potential. Now I'm gonna focus on human gene editing, but there are lots of uses beyond this. It's used in, um, plants, it's used in, uh, dealing with diseases, all sorts of things. But I'm gonna focus on editing human genome itself. Now, I'm going to start by giving you a brief explanation of what I mean when I say gene editing.
and I'm going to try to avoid making it too scientific, partly because I'm not myself a scientist anyway, but also I wanted to try to give you the gist of it. You don't need to know all the technological details of it. And then I wanna give you a sense of the range of uses to which we might put the technology and what we're doing now and what we might be able to do in the future, and in some sense, the real future and in the very speculative future as well. From there, I want to explore some of the benefits of the technology and some of the potential impacts that might want to give us pause. Um, so as ever, what I want to do is try to steer you through the issues and give you through the thoughts. What I don't want to do is try to convince you of a particular position to take.
So in particular, that's why I want to point out things that are things you might wanna think about, um, as concerns and things that are benefits that you might not have not have thought about. So what do I mean when I say gene editing? Um, so this is a picture of essentially a, a, a very simple gist of what I mean. So it's the technology that has developed over the last 10, 20 years that I'm particularly interested in, and it's what people mean when they talk about the new gene editing. Um, they mean recently developed technologies that have vastly improved our ability to be precise in the way that we edit genes or genetic material. Um, and what it means is a technology that is a way to change the DNA in our cells. Now, what changing someone's DNA might do, it might change their traits that are caused by their genes.
so if you change the traits, you change some genetic material in an embryo, it might change what the embryo looks like as a person when they grow up. Their eye colour might be a really obvious example, but in particular, it might affect things like whether we're likely to get a disease. So some of our predispositions to diseases are genetically determined. So what editing our DNA might do, it might reduce our risk of getting a disease. So you might have a genetic predisposition to say heart disease, um, and this might change that predisposition, or in some cases, depending on the type of disease, it might remove that disease risk altogether. So you might be able to edit out the genetic factors that cause a disease, and this will be particularly, um, obvious in a case that's caused by only one gene. So one small mutation that causes a particular gene, and you edit that mutation and so the disease doesn't arise.
Now, the way we have moved towards being able to do this in a much more precise way now, is this idea that we now have technology that enables scientists to, as we might say, cut DNA sequences at a particular spot and remove DNA or make a cut and then and add some DNA. Um, and they do this by what's called an enzyme, that's called an engineered nucleases. So this is where it'll get slightly scientific, but, but bear with me, not for too long. Um, a nucleus is a type of enzyme that can break the bonds that hold DNA together, and when they've been engineered, we can direct them to break particular bonds. And so these essentially act like molecular scissors. And so that's what's happening in this picture. These are all examples of nucleases. And what they're doing there is they're different methods of cutting this DNA strand.
So this is your strand, and then it's making a cut. Sometimes that means there'll be a deletion, or sometimes you might put something else in, you'll add in, um, some D N A there. Now we've been able to do this for quite some time. We've used a range of these over time. Mega nucleases is one example, Zed fns, zinc finger nucleases tails, and so on. These are all examples of ways in which this has been possible to do for some time, but you might have heard of one that hit the news in the last couple of years. That's the one that seems like the real game changer, and that's crispr, which is probably familiar to most of you. So CRISPR stands for clustered regularly, interspersed short Pandora repeats. But the reason that it's innovative and important is it made it much easier to edit dna.
It's faster, it's cheaper, and it's much, much more accurate. And so this was what was particularly important about it. It has enabled us to do something that we couldn't do before. In a sense, we can be really precise, really selective, and really efficient. Now to understand what CRISPR is or briefly explain it, but again, you don't need lots of detail to really understand how it works. But CRISPR is a system that's naturally occurring in bacteria, and it's what they use to essentially fight off pathogens. So CRISPR elements can be found in lots of bacteria, and what they do is they allow the bacteria to find and destroy the DNA in pathogens specifically, it destroys nucleic acids from those pathogens. So bits of genetic material say in viruses that them, so a good example is the strep ooc bacteria uses CRISPR in its system to identify and cut up the DNA within viruses and thereby destroys them.
Now, to do this, the CRISPR system identifies a specific part of the pathogen dna and it remembers that. And what it does is once it's got that target, it uses this, um, it uses something called guide rna, so G rna, and it binds the target with that. It matches it and binds to it, and then the, the molecule binds to it and it cuts at that point. That's where it cuts out the dna. Now, the reason that's important for us is that with crispr, we now know that can use our own engineered rna. So essentially we create a template of RNA that picks the bit of DNA that we wanna target, and we send it into the, into the cells. And there we can use CRISPR to cut at the particular point that we've designated. So the simplest way to think about it is it's like a genetic template with molecular scissors.
And when we decide which sections of the DNA to to edit, we therefore are in control of what we change. Now, we can use this in a range of ways. One thing we can do is knock out bits of dna. We can knock in bits of dna, so we might pull in dna, we can change the activation of particular genetic mutations, of particular genes by, um, bringing in particular proteins at a particular location and coating the DNA and changing how it's expressed. And we can use it in research projects where we're trying to screen different candidate genes. Now this was discovered, uh, we've known about CRISPR and the system for quite a long time, but it was only in the early 2010s that it was developed into a tool that could be used for gene editing. And the two key scientists involved, Manuel Sharp NTA and Jennifer Doudna were awarded the Noble Prize in chemistry for this discovery in 2020.
So what can we edit? Well, the crucial thing to think about is not just which bits of DNA n but a range of questions about what we're editing because it matters and it determines what some of the ethical issues that arise will be. So to break it down, um, there is a difference between editing DNA in somatic cells. So most of the body's cells and germline cells. And by germline cells, I mean cells that contain dna that's gonna be passed down in reproduction, eggs, sperm, fertilized eggs. Now, the reason this is an important difference, um, is partly because when you change a germline cell, so an egg or a sperm, if you change the DNA in that, then it is carried into the new embryo that's created and essentially forms part of the fundamental DNA of the new organism that emerges. So if you change the DNA in an egg and then it is fertilized with sperm, that change will now be in every cell of the body of the new person that emerges from that embryo.
So it carries all of the changes, and it also means those changes will be passed down to their children. So what it means is when you change the germ line, you change, you introduce a change into the gimple that remains and continues and can be passed on and spread. Whereas when you introduce changes to sematic cells, neither of those things are true. The other key thing to be thinking about when you're working out what you think the ethical issues are and what you think we should do about them is to think whose cells are we editing? So we might edit cells in sperm or eggs or in an embryo. So most likely we might wanna pick one of those if we're going to make a change. So say somebody is worried that they're going to have a child that's affected by a particular genetic disorder that's in their family, they might want to edit either their gamuts or the embryo that they produce.
We also, however, will amend cells or want to edit cells in people, so people, not embryos, but people. And there we would ask the question of of course, whether they're an adult or a child, cuz that's going to make a difference too. So if it's an adult and we're going to give them a genetic therapy, we need the consent. They need to understand the risks and benefits. But when that person is a child, then we're deciding on their behalf. And so again, we have to think in their best interest when we make a decision for them. Whereas when we're changing embryos or gamuts, there isn't a person. There is, if you think an embryo is a le is some sort of person, then you may think you're changing a person or there is certainly a future person or a potential person. Um, there isn't a legal illegal person yet, but there might be a moral person in some sense.
But what you are doing there is you are changing a future person, you're altering the life they might have. And this is this latter kind of change, this change to embers. This is exactly the kind of thing that hits the headline has hit the headlines. So in 2019, gene editing hit the headlines when Haj Q reported that he had edited the genes in two embryos. Now, he'd done this because he was hoping to afford them genetic resistance to hiv. Um, his work, however, was met with outrage when it was made public from the scientific community, from philosophers, um, and he was five in his position and ultimately jailed. Now the reason for this, of course, was, is he had introduced changes into these embryos, but there are many concerns that people have that will come to about why this might be problematic. And so essentially he proceeded well ahead of the end of any discussion or debate that we've had about the implications of doing this.
Um, and in particular, the potential harms and damage he might have done, um, to those future people. They are, by all accounts, healthy and doing well, but it's very early days and we really don't know some of the implications of what he did. Now, these events spurred national and international responses, particularly the formation of a W H O expert advisory committee, which is to develop global standards and strategies for governance and oversight of human genome editing. Um, and in China they have criminalized, um, practices relating to gene editing, so very specific national responses as well as international responses. So before we delve into some of the the complex ethical issues that this creates, I wanna take a moment to, to look at some of the things that we can at the moment do with gene editing to give you a bit of, sort of flesh that out a bit.
Speaker 1 (11:19):
Um, so what can it do now? Well, one of the really important useful things we can use things like crisp before is research. So it's hugely valuable in enabling us to understand gene function gives scientists a very powerful tool for working out what genes do. So for example, they can change a single gene in an animal and then study it to see what that gene does. They knock it out. Uh, so a good example is the bird lab in the United States is studying deafness, and it does it by focusing on genes in zebra fish, um, that it, things are involved in hearing and it knocks out different genes and then studies the function of the re of the fish. Another good example of something that CRISPR enables us to do is it enables us to do model diseases. So it can enable scientists to manipulate cellular behavior and function.
So what it does is it enables them to create very precise genetically engineered animals and study them where they look at how the disease, the particular disease works. Um, and it does this. So a good example is studying cardiovascular disease. So CVD is usually associated with a single genetic mutation. So it's a good target. And what they do is they create models in which they analyze the pathogenic genes. So they knock them in and they knock them out. And the really valuable thing about these research, of course, is then it can be used to develop therapies and treatments. So a good example of this is the potential development of tumor targeted T-cells that can be used in the treatment of cancers. These precise models also enable scientists to test treatments and drugs. So they can target a particular, uh, they can create a knockin mouse, they create a particular model, and then they test drugs and they can see whether or not they can treat the condition.
We also use it to think about ways in which we can create genetically based therapies. So not only do we create disease models that we can test drugs on, but we can also develop gene-based therapies. So these might be therapies where we would alter the genetic sequences in someone's cells to prevent them having a disease. And there's good examples of where this has already been successfully achieved. Um, so you might have heard of Leila Richards. She was the first person successfully treated with genetically edited immune cells, which eradicated her leukaemia. So they took cells from her body, they edited them, and they put them back into her, said, infused them back into her. Um, and it enabled her body to destroy the cancer cells that were affecting her. And other children have been treated since. We can also know there are trials where CRISPR has been used to correct genetic mutations in blood stem cells, which then go back into their body and help them produce healthy blood cells.
So this would mean that we would have treatments for cancers, neurodegenerative disorders, viral diseases, all sorts of things. So the range of applications in terms of human health is huge. Now, this sounds incredibly promising and it is, but there are still many technical limits that make some of these things not yet a reality. So when new technologies emerge, we often get very interested as philosophers and, and lawyers think about, well, what will happen? What can the technology will do? But it's really important to realize that at this point it is very much in the research phase, and we're very limited by our knowledge of genetic factors, um, and how diseases work and how conditions work. So we know a lot about how some diseases work, um, and we're good on single gene disorders, but other disorders are much more complicated and they, and they involve many genetic factors.
And so this is one of the barriers to us being able to use this technology at the moment. Um, another barrier at the moment is cost effectiveness and how well we can sequence genomes and manage the data demands that it involves. Um, and there are also lots of complexities about trying to work out, um, what the impacts will be in terms of we may knock out a genome, we might think that's gonna improve health in one way, but we can't necessarily be sure what the other knock on effects are. And one of the reasons for this is that a given genetic sequence might have many functions. So we might know it's associated with the disease, but we may not know all the other ways in which it's used in the body, and therefore we can't necessarily work out what all the health implications of doing something are.
Now, in the future, we might be able to do all sorts of other things. So we might be able to develop all sorts of treatments. And the one that people are part, this is Layla, one of the things people are particularly interested in that we'll talk about for some time is we might be able to use it to enhance ourselves. Um, so this, if anybody's ever seen Captain America, this is essentially what happens in Captain America. He's very small, he's quite short, he's given some unknown therapy that we don't know very much about. And in the end, he turns into Captain America. So this is the people, people's idea about the sort of future of gene editing that we will create superhumans, we will create, um, different kinds of people. Um, and that's one of the great worries, um, that people have. And so we will look at that.
So the question, so at the moment we have a, we have a legal framework. We have gtac saying that certain things are prohibited, and there also you need a license for a range of gene therapies. So it's very tightly controlled at the moment. And there are also constraints. You can't do germline editing and put it into an embryo, uh, in an embryo and then, and then bring the embryo to term at the moment. So the question is, should we proceed with it? And what should we do? Now this question is of course, hugely complex. It depends on what you mean. We're going to use it for, do you mean treating diseases? Do you mean changing our traits? Do you mean enhancing ourselves? Do you mean eradicating particular traits or diseases or disabilities? Do we mean our adults or children or embryos or gamuts or just in research?
We need to think about the risks and benefits. And those risks and benefits might be short term or they might be long term, they might be individual benefits, they might be societal benefits. And all of these things need to be balanced against one another, and they intersect to create really complex questions. So what I wanna do is try and explore some of those, um, and think through a couple of them, but it'll be on the scope to think about all of them. The first I wanna think about is this idea of germline, um, gene editing and the particular issues that that creates now in the wake of gen Hughes's work being revealed, um, and the community, the scientific community being appalled of what had happened. There was a call for pause. So this is ang saying the moratorium that had been called for is a pause.
Society needs to figure out if we all want to do this, if this is good for society, and that takes time. And if we do, we need to have guidelines first so that the people who do this work can proceed in a responsible way with the right oversight and quality controls. So they've asked for pause. Now why would people pause? Well, one of the reasons for the desire to pause that should inform our thinking about whether we should proceed with germline gene editing, is that the changes that we make will become permanent part of our collective gene pool, and they will affect the type of people who are born in the future. So once it's done, it might be very difficult to reverse. So unlike changes made to somatic cells, germline changes are arguably gonna affect all of us as the community, nationally, even globally.
Um, we might also within this sort of thinking then in the face of this, be thinking, well, better not to risk it then. So this idea of stasis quo bias, we might decide, well, it's, it's better the devil, you know. But on the other hand, we might be thinking, well, what are the benefits here? Are they worth the risk? There's a lot of complex thinking when we know this change is a change that we may not be able to reverse. There will also be considerations when we think about this, if it's a permanent change and it's a collective change, um, what are, are these benefits going to be shared with everybody? Will it exacerbate res existing inequalities? Will there be burdens that come from it that we can't address how we control it? What if one country does it and another doesn't? So these are particular concerns that are raised by germline gene editing.
But let's think about what some of the, so just bear those in mind that some of the things I'm gonna talk about relate only to germline and some relate to sematic, um, and some relate to both. So one of the first things we might think about is the fact that these technologies have massive potential to improve health and wellbeing. So sematic treatments clearly have huge benefits in terms of improving people's health. So a good example is CTLA four insufficiency. This is a, a disease where the T-cells don't function very well. And essentially you have the immune system attacking your own body put simply. Um, and the current trip of that is bone marrow transplants, which are painful. They're unpleasant. Um, they're difficult at the moment. There are gene editing treatments being developed for this, which will simply correct the mutation in the T-cells. Um, and then they will stop behaving abnormally.
Now, the reason this will be a great treatment is it'll be easier, it's hospital time, less unpleasant. There's many, many examples of that already happening, um, in the literature. So we know that it will increase, increase health in that sense through somatic treatments. We also know that it's gonna have the possibility to eradicate disease so that someone will never suffer it. And that is of course, the great hope for people who particularly who carry genetic disorders in their family to prevent them. Um, having to go through either having a child who is affected in this way or to go through what they currently go through, which is either to have carrier testing of some kind or to have, um, prenatal genetic testing. And therefore find out by looking at the embryo, what its genetic makeup will be. But of course, the problem with that is it poses two, two ethical problems.
One is that you are then selecting amongst embryos, which is a problem because you are essentially selecting amongst people, um, and will come to some of the concerns that the disability, uh, the disabled community raise about selecting amongst persons, um, and choosing the ones without disabilities. Or if you don't choose to do that and you take potluck, then they might be in the position of them having to terminate affected pregnancies. And so these are both really problematic choices for people to make. Whereas if you could take an embryo and edit it so that you edited out the disease, some of those problems would go away. There would be other moral problems obviously that we're talking about, but those particular problems would be reduced. We would also improve societal population health by reducing diseases. And of course, all of those things have the knock on benefits of reducing the burden on our healthcare system, um, and increasing population health.
So there are many obvious benefits there, but there are of course some downsides. And one of those that I wanna talk to you about in some dis um, detail is this idea of eradicating things. Um, now I've talked previously about vaccination and the idea of, of, um, eradicating particular diseases and why this might be a good thing. But when we're thinking about editing our genome, in particularly the germline where we're going to change the future people who are born, it's not as simple as simply saying we should eradicate things that are bad in life. So one of the things that we might obviously want to do is eradicate diseases, but we might wanna think about what we mean by a disease and what we mean by a disability. And that's why I've heard of this disease, disability and difference because the bright lines that you might think exist between what is the disease, what is the disability, and what is the difference and not so bright at all.
And also the assumption that disability is something to be eradicated is a, is the right thing to do, is itself not actually a simple or straightforward question because we might amend the germline and remove genetic mutations that cause disease or disability. And if we did it enough, we might eradicate those things in the population or at least reduce them. Now this might be good because families wouldn't pass them down to the children. They might not have to burn bear the burden of this, and the people born wouldn't be afflicted with them. Now, for conditions that are life limiting or very difficult to manage or cope with, um, this might be welcome, there might well be con um, conditions, um, of which there are many, that this would be a good thing. Um, and at the moment, if we're doing that via abortion or embryo selection, this would avoid, as I said, those moral problems because we're selecting against the disease, not against the person with the disease.
But this approach is presumes that diseases and disabilities are necessarily harms. It focuses on the downsides of them, and we can easily imagine what that means. It means painful conditions, life shortening conditions, conditions that restrict behaviour. Um, and there are things that we clearly class as diseases, things like Huntington's disease or early onset dementia, cardiovascular disease. We can list hundreds and thousands, but it gets murkier when we begin to think about where the borders are. So this view about disability as a dis as a harm is where I wanna start. So disease we usually tend to mean something that is inherently problematic. Disability is where it gets more complex. So this is the philosophy of Janet Radcliff Richards. And she's taken the view that disability is, is a harm. So she says it's hard to doubt that most people must regard disability as having negative value.
However strong, they're all considered commitment to any or all, um, existing disabled people, however, willing they are to do all they can to make life as good as possible for them. And even though they would not change their existing disabled child or spouse or colleague for any able-bodied person in the world, the fact remains that most people would think it is better for themselves if their disabled friends and relations and employees were not disabled. Now not everybody shares this view, and this is one of the points at which I think it's important to take pause and to think about if we're talking about using gene editing to change and remove disability, um, we need to think about the other sides, this to this view. Um, and one of those is that disability eradication is a form of discrimination. So this is Heidi Crowder that you might have heard of.
Um, she recently brought challenges to the abortion act on the grounds that, um, the provisions in the abortion act that allow for termination on the grounds of disability, but not other grounds was discriminatory against people with dis disabilities. So she specifically has downs, um, but this applies to to other, um, con other disabilities as well. Um, and one of the first questions to pose there is, um, what do we mean when we say something is a disability? Um, do we mean something that really is very life-limiting or do we, are we actually identifying something that we might be better off calling a difference? And we might think that with something like down syndrome, which is now very much associated with high quality of life, long life, autism is another really good example. And would our world be less rich and diverse if we did eradicate these?
And that's exactly what these protestors are talking about when they're saying don't screen us out. What they're referring to is n i p testing, um, which is a much more targeted, effective testing that you can have done in early pregnancy to make a decision to terminate potentially if you, if you choose to do so, when the result tells you that, um, the, the foetus is likely to have down syndrome or other syndromes. Um, and so one thing to give us pause is to think, well, what are we saying when we say this is a condition that we should edit out, that we should eradicate? Um, and for many people, uh, in the disabled community, um, we know studies show and also we could just work it out just by thinking about it, they experience this as hurtful, um, and distressing because essentially it's saying your life, your qualities are qualities not desirable. They are qualities to remove and that we will be better off without people like you. Um, and so there is a tension there between thinking, well, it is good to treat disease and it's good to treat things that afflict people's lives badly. But is it right to then say, well, anything that's like that is, is immediately a reason, say we should eradicate this very thing from our population.
Another strand to this thinking is the idea of what we call the social model of disability. Now this doesn't apply to all disabilities, um, but certainly it's the thing to think about is the idea that not all individual limitations, whatever kind, um, not everything is coming from the person's particular capacities, but rather it's coming from the fact that we don't take the needs of disabled people into accounts in the way we organize our society. So essentially, many people experience their difference as disabling, not because it's inherently disabling, but because society is not set up to accommodate them. I mean, a really good example would be children with adhd that the way in which schools are organized does not account very well for children who need to move or children can't concentrate for long periods of time. Um, they are disabled only because they have to operate or partly because they have to operate within a system that assumes particular things are norms to which they can't conform. And the third strand that I want you to think about, um, when you are thinking about what are we going to eradicate, how should we use this editing technology is the idea of disability as a good.
Um, so this, uh, this is Charles Foster who's a philosopher and writer in Oxford talking about his son Tom. And he's written publicly about Tom's diagnosis, dyslexia, um, quite a lot. Um, and I find it really powerful where he says, I can't bring myself to say he's dyslexia is pathological. And he talks about how Tom is a big picture person, he's intuitive. Um, my particular <inaudible>, he says, when I see a tree, it's clothed with other people's written descriptions of trees. The tree itself is more or less invisible, but not for Tom. There's nothing vicarious about his world. He sees it for himself. And he seems to see far more of the real tree than I do. And what Charles is saying here is that something you might assume is a disability or something that is problematic or something that is, um, something that is wrong that we might have thought of eradicating.
We ought to take pause and see can we see value in it as well before we decide what it is we will and won't eradicate. So similarly, Greta Thunberg describes her autism as her superpower because of the clarity and the focus that it gives her. Her black and white thinking is what led her, um, to do what she does and to enable her to do what she does. So when you are thinking about whether you think we should use gene editing technology to eradicate things, we need to take quite a lot of pause and think, well, what would that mean? And which things will we choose? And it's not as simple as simply saying things that make people's lives difficult, difficult, we should get rid of them.
The second thing to think about in terms of what we do with um, gene editing is the idea of health inequities. So this is disability adjusted life years. And you can see that there are some countries, um, where people are much likely to live for a long time than in other countries. Now, one of the great concerns about gene editing technology is whether or not it will make these inequities even worse. Now, it might do it in individual cases, so it might do it nationally. If the technology is expensive, then only some people have access to it. So some people will be edited, some people have their children treated and some will not. And so the existing inequities that we already see will be expanded. Now, on a global level, this might happen as well. And this is why there have been cause internationally for when we deploy this technology to be thinking about how can we ensure that it doesn't exacerbate existing health inequities, it cut in the other direction, it might be cheaper and accessible and it might eradicate diseases that can't be treated very easily in some countries where, um, life, uh, life expectancy is much lower and it may be incredibly valuable.
Um, but we do know of course, historically that the focus has not been on treating diseases that are afflict developing countries, but rather on the countries that are going to be able to pay for them. So we need to bear that in mind as well. The next thing to think about when we're thinking about what should we do is this concept of reproductive autonomy. Now, what we mean by reproductive autonomy is giving parents choices about what they do in terms of reproduction. And the reason that we do this is because we think that reproductive goals are very valuable and so we respect people's choices about them. Um, and in that sense, if we were going to allow parents to make choices about editing their embryos or their gamuts, if we were really committed to reproductive autonomy and we really thought, thought the parental choice and individual choice very important, then we will allow parents to make their own choices.
Now, the reason we do this is because we think, um, people ably have strong feelings about the children that they are going to give birth to. And it's also a good thing in some ways, um, to promote reproductive autonomy. If you think of reproduction of an expression of what it means to be human, it's really valuable in people's lives. It's important to give it, um, a lot of weight. And that's what we largely do in some ways at the moment in terms of, um, the children people have. But we do already legally limit certain things that parents can do. So the H F E A act limits lots of choices that you can make. Um, and we have limits on when you can terminate pregnancies. And these are about, um, allowing quite a lot of choice but not allowing any choice. And gene editing puts lots of pressure on this to say, well, here's a very particular kind of choice that's soon to be possible and we need to think about whether or not we throw to people's autonomy and allow them to make their own choices or whether or whether we don't.
Now, one thing to think about that of course, is the role of the government in telling us what to do about what sorts of children we have and what were the legitimate bounds of it telling us what we're allowed to do are. And we might also think when the government is doing that, when the state's doing that, it creates impacts. So if you think about, say, um, the limits and the abortion act on when you can and can't terminate, that's exactly what Crowder's point is, is saying that because termination is allowed on disability grounds and because we regularly offer people testing to determine whether or not a pregnancy is affected by downs, what we've created in this country is a widespread termination and eradication of downs. So collectively, parental choices have led to the re far lower rates of downs, babies being born in this country than in other countries where that's not the case.
So the way we regulate interacts with the choices people make and enables certain things to be outcomes. Um, we need to think about where those choices are in some sense private, but they are in another sense, choices that affect somebody else, that somebody just doesn't exist yet. So they're affecting future persons. And so in one sense, you have to balance individual autonomy about reproductive choices we might make against the impact on a future person. Now, philosophically that's complicated cuz that person doesn't exist yet, but we won't delve into those murky waters, um, today. But we do need to think about what this has an impact, uh, in terms of society, but also the expressives problems, the the message it sends to the disabled community and so on. And one particularly interesting element of this that will come to once I've explained a bit of, uh, stuff about enhancement to you is the idea of the impact that this might have on the parent-child relationship. So it may well be that where it prevents diseases, particularly serious inherited disorders, that parents have had one child with this disorder and they don't wanna have another child cause they see how dreadful it is for the child. That might not be terribly controversial to edit that out, but it might be very controversial to allow parents to enhance their children or to edit their traits and create what we, what we sometimes hear called designer babies.
So that brings me to this idea of what would happen, not if we just use gene editing to treat disease or is for research, but instead we use it, we have the capacity to use it to enhance ourselves. Now why have I put a graph up here? Well, the graph here is to is to give you the idea. First thing to think about is, um, many traits, they may be binary. Some people have green eyes, some people have blue eyes. But the interesting thing is the distribution of traits. So when you are thinking first about what should we enhance, think about what happens if we all make particular choices, so particular, particular enhancements and by, so let's take us an enhancement being tall so we could enhance so that we're all taller. Now, being tall is actually associated with better life outcomes. Um, you can get stuff off high shelves, that's true, but it's bad when you're on a long haul flight.
I can take, take it from me being six feet tall, it's good and it's bad, but largely people think being tall or particular height, it's a good thing, but it's distributed, it's probably distributed on a curve a bit like that. Now we might change traits so that everybody shifts up to the end. So we all overcome really tall and we cluster. So we perform a graph like this, we become quite narrowly clustered. Or it might be that everybody wants to be the same height, so we all end up the same and nobody wants to be down here. But it depends and it depends very much on the type of trait. And the other aspect to this that's important to be thinking about is some goods are good in themselves and some things are good positionally, they're good because other people don't have them, or it's good to be this way because you have more of it than somebody else.
So hype might be a good thing if you live in a world that works well for someone who's five 10, being around about five 10 or a little bit taller might be really good, but it may not be good to be much, much taller. You don't get more benefits the taller you get, but you might get some benefits by being slightly taller than other people. And it depends on the particular trait. The other thing to think about is what does it mean when we say we are enhancing ourselves? So do we mean just returning ourselves to normal function? Do we mean bringing everybody up to some particular level? Do we mean increasing everybody's capacity by the same amount? So what that would mean is we just shift the graph over like that the distribution remains the same, but it shifts in a particular way. Or do we mean making all of us amazing? Everybody gets hugely increased capacities well beyond the norm. What kinds of choices do we make if we're doing this? So do we make sure that we become incredibly athletic or very brilliant or very beautiful? Lots of traits that you could choose if we ever got the capacity to do this and we could alter the genes that do these things. There are all sorts of questions about how would you enhance and what would you enhance and why? And would there be any limits on this?
So what I now want to think about is what some of the concerns about enhancing might be. Actually now I'll talk to you about the benefits first and then we'll then we'll go, let's have the good news first. What might be really good about enhancing ourselves? Well, one of those is it might increase people's quality of life. There might be certain traits if we could enhance them, that we avoid things that are problematic. So you might think aging might be one we just all get to live longer and that might be a good thing. We might develop enhancements that enables, have experiences that we couldn't had before. We can hear better. We could fly, we could do all sorts of incredible things. We might increase our capacities beyond what they currently are so we can remember things for longer. We might be more empathetic, we might be better linguists.
There are so many things you can imagine enhancing that might make our lives and our social life so much better, um, might be able to concentrate for longer and work more efficiently so we can have more relaxation time. The list is endless. You can see that there are lots of things that might be really good. Um, but one of the things is that people suggest that there might be really big downsides to enhancing ourselves. And one of those concerns, um, is Michael Sandell. So Michael Sandell, uh, writes often on enhancement and he says, well, one of the problems with enhancement might be that it creates a kind of hyper agency, this Promethean aspiration to remake nature, including human nature to serve our purposes and satisfy our desires. The problem is not the drift to mechanism, but the drive to mastery. So what he's trying to say is that there is something good in experiencing life where you get the life you're given, you get the genetic lottery ticket that you got and you deal with it.
That that is valuable in the way that we interact with the world, um, and that what we shouldn't be trying to do is control our existences. That that, um, damages our relationship with nature and the world. Now an alternative way to think about this, yeah, so an alternative way to think about this is Geha and Julian Leski. Now what they do is they say, well actually this kind of mastery isn't really what's going to happen. What will really happen is that enhancements typically at this stage certainly will only really modulate some things that we already have. So we won't be able to make massive changes. What we'll do is we'll have small changes rather than radical changes. Um, and what they will do is they'll work really on natural processes, which are probably already not set at optimal levels and we'll just tweak them a little bit.
Um, and at the moment of course they point out because of human variation, even within the normal range, many people are not at what we might decide to consider an optimal level. So an enhancement might just bring more people to the optimal level. So they're beyond their own capacities, but that doesn't mean they've become superhuman. So one thing to think about when you are sort of considering what you think about this is that the, the risks and benefits here and the downsides and the capacity we have to control are possibly not as big as we might imagine. The other strand to this is that often people are concerned that there'll be bad effects and good effects, but one argument here is, well actually that's just an argument for, for being more fine tuned. Don't make great big changes that have big good effects and big negative effects.
You might make small tweaks that might be really important, but not huge changes. But I think the other thing to think about as well is this idea. So sandell is suggesting in a sense that there's sort of some naturalness to us and then we ought to engage with that and, and shape our lives by working with what nature has dealt us. Now Mike Parker makes a point, which is related but not the same, where he says, look, our lives are interwoven, um, and they're interwoven with struggles. And that's what makes us what we are. That we, we have good things, we have bad things, we have light and we have dark. Um, and that's a value and significance in the way that we exist. He's taking sand's kind of point and saying, look, you know, this is what's good. We all have good things, we all have bad things, and that's what shapes us as people the way we deal with that.
But Cain and Lesky make, I think they're very good point, which is like, well that might be true for many people, but, and some people have a lot of light and no dark, but other people have all dark. Uh, and so the issue is whether or not we should accept what nature delivers up to us or make a choice. And that's where I think the really important thing thinking has to happen. I think simply saying, well this is how things are and we, you know, we we gain things from dealing with adversity and so on is is how it should be fails to account for the fact that, well that assumes that people have a good balance, at least a sufficiently good balance. Their lives are are not too difficult for them. But as kahan, we rightly point out that's not true for everybody. And we clearly don't think that's true when we treat things like diseases. If we really thought that being natural was exactly the way we should accept things, then we wouldn't really much of medicine we wouldn't do at all say, well that's how it is, uh, and we should just leave it as it is. And in fact, you are gaining through dealing with the fact that you've now got cancer, which would we clearly think is absurd. So I think it's important even though there is something different about gene editing, not to simply think, well, the naturalness argument, um, is the argument that ends is the argument.
The other strand to this that's really important when we're thinking about editing embryos. So going back to this idea of reproductive autonomy, um, is the idea of the impact on the parent-child relationship. So sandell again, um, and what he's talking about is what it will be like if parents can use something he's talking about selecting, but it's the same thing. Um, what it'll be like if parents can really choose their children's traits. And he makes the point. He says, in a social world that prizes mastery and control parenthood is a school for humility. We care deeply about our children and yet we cannot choose the kind we want and his teachers parents to be open to the unbidden. Such openness is a disposition worth affirming not only within families but in the wider world as well. It invites us to abide the unexpected, to live with dissonance, to reign in the impulse to control.
He's essentially saying that we become good parents by accepting what we get. And that actually, I think you can take this further and say, one of the things that's really valuable about parental love is exactly that, that parents don't love contingently and therefore we as children, we're all at somebody's child, are not loved contingently. That there is one love that we have in the world which comes purely because we are ourselves. Um, and this would damage that, that vital bond that is part of the parent child bond. And so we would damage a relationship that is valuable for all of us. And I think there's something in what he says there, um, is one thing to think about. Another thing to think about that might be a problem with enhancements is we may not know what the problematic consequences will be. So we may not know what the harms are.
We can imagine some of them. We can imagine that if we, um, edit embryos as a slightly lace station, we, and we make mistakes, we might end up with children who have some of the traits that were not edited out because of mosaicism might be a problem. We might see a division between those who can access technologies and those who cannot. We might see a real decrease in variation and diversity. And one of the bad sides to that will be a decrease in tolerance. There'll be greater pressure to conform. So as we create new norms, the pressure to to conform to those norms will rise. Um, and we might also with things like removing disability or reducing it, but not eradicating it, seeing a drop in critical mass. So we don't see the healthcare resources devoted to it. We don't see the adaptations made towards it because these people are, there's fewer of them and they're much more marginalized.
Another thing to worry about is an expectation to enhance. So if there is a shift in norms, it may be that parents become under pressure to enhance, to select technologies to do this. It may be that people feel under pressure to use technologies. So it becomes possible to make changes to ourselves. Um, once, you know, when we're adults, we might all feel pressure, there might be pressure in the workplace, pressure in education, and we can actually see that already and lots of choices we already make that we are under pressure to, um, compete essentially with one another by doing certain things to con to conform to particular norms. Um, and the final thing to think about is this idea of a right to an open future. So the other strand of this idea of what will happen if we edit people before they come into existence, we change people who are future people.
So we edit embryos is this idea of we are deciding what they will be. In a sense you are choosing someone's genetic makeup and this can create its specul expectations. So they have been edited for a particular trait to be enhanced and that creates expectations about them living up to that. Um, it might, it's argued limit their freedom. So it does the idea that it limits their capacity to design their own identity to create themselves as they grow up. Because all the time they might know, well I ought to be this way. I have this expectation because my genetics say this is how I will be. I've been edited and this is what ought to be the case with me. Now that's a form of re of genetic reductionism. It's assuming that genetics drive everything about us, which is absolutely not true at all. But it'll be very difficult to shake up this idea that inherently I should be able to do this or inherently I ought to do this because this is where my talents lie.
And so it restricts people's capacity, um, to design their own futures. And there are arguments that this essentially offends against their their human dignity. Um, is that true? Will people feel that way? They're certainly one can imagine that some people would feel that way and it will very much depend on, on how these things play out. So what should we do? Um, well we have questions about whether we're going to limit use and when we do that we should think about all of these things. But what I think we need to do, cuz I don't want to recommend what we ought to do, what I think is we need to, with some of these technologies as we are now doing, consider their impact on individuals. So do they increase individual welfare but also their wider impact on us, on a, on us as a community.
Um, and we need to recognize that once we start down a particular path that's very difficult to stop. Um, but we need to also be mindful. That'd be really problematic if we avoid a technological developments that might bring great benefits merely for fear that the risks might be so great even though those risks might never eventuate. So we need to be, um, aware of the possibility for status quo bias, aware of our tendency to, to loss aversion, that we prefer to avoid losses than to gain good things. There will be very complicated questions about the balance between individual interests and wider impacts. Um, and when we are thinking about technology, when we come to the point where we are able to enhance ourselves, the big question we need to think about is whether what sort of society want we want to be and what our relationship with our natural selves should be.
Now at this stage, rightly, um, organizations like the Northfield Council, um, and the organizing committee of the summit on human genome editing are or are suggesting caution and suggesting precautionary approaches that we should be thinking about the welfare of future people and balancing this against societal harms. So fundamentally my conclusion is for things like sematic treatments, absolutely these seem like largely good things and moving in the right direction, but with germline changes proceed with caution, but not so much caution, um, that we don't take the benefits where we might see them. We might just need to think very deeply, um, about what a benefit is and whether it's worth it. Thank you.
Thank you very much. We've got a few questions here and maybe some more people in here have some questions. Um, I was thinking when I was looking at the, the slides of the beautiful, the brainy and the sporty and wouldn't it be lovely if you all have perfect smiles and and we could genetically program them? And then I thought, well actually that's not really the point, is it? I would like a perfect smile, but I'd like everyone else not to have it. And <laugh>, I don't have one <laugh>, but and and that's the problem, isn't it? You get into this maybe competitive thing where it's not everywhere. And one of our questions questions here is like, what happens if one country allows it and other countries are still on pause?
Well that's that. I mean that's one of the reasons that I think certainly there are international groups now trying to coordinate responsible. That's exactly it. And that's the problem is you end up in essentially an enhancement arms race that the pressure becomes how do we resist doing that? Yes.
Yeah. Yes. And especially parents, I'm sure you're aware, can be very competitive about their children. So I'm married to a dyslexic, I have dyslexic children. Was I super competitive? I might have chosen not to and then we wouldn't have very interesting household, but you know, it's a, it's, it's easy to see it creeping in, isn't it?
Exactly. Yes, yes. And the other, um, the question which has been raised here is although now we have an idea of what is the perfect person or whatever it is. If, if we were to look in 500 years, it might be a different Perfect. And if we were to look back 500 years, it might also, you might look for someone who's good at lifting stones to build cathedrals or something. So we have to bear in mind that the, the future use of all this.
Yeah, exactly. I think that what we think of is good is very much temporally located. It's also contextually located. It's socially what we value in our society might be different to other people's as well. The idea that you can get consensus is really, really difficult. But at the same time, if you leave it to just free choice and we all make our own choices, what we, I imagine we will see is some choices will be ones that lots of people cleave towards. And so you'll get this clustering of traits and that might be problematic as well because again, that means that people who don't choose those traits, um, become much more marginalized. That we get these sort of, I imagine we get silos of trachs would be a problem as well.
Brave new worlds. Yeah. Yes. Does it? Sorry, does anyone in the room have a question? Oh yes. Lots. The lady here. Yeah.
I like to my own, sorry. I like to my own perspective because I'm a scientist. What you said has opened my, my mind. Now what I'm going to say is that genetically enhance, enhancing ourselves, in other words to me is cloning. No one has ever used the word cloning here so far. So I'm against cloning individuals, so I'm in favor of somatic editing genes, not germline. The whole point is that there's another way of looking at this. Some people will go to a cosmetic surgeon enhancing the bra, uh, the breast, what for? It's the same thing here. So that's why my perspective is do something that is useful, permissible, and acceptable. If you want to enhance yourself, go ahead, do it artificially yourself. Don't make it as a, a rule to say we all have to follow suit because we end up as a clone. Scientists has already stopped cloning sheep when we knew we could do it. So why do we destroy ourselves? Why do we do destroy our gene pools? So this is not only an ethical issue, this is for our survival. That's my view. Thanks.
Can you envisage a time when a child would be able to sue their parents for elected not to edit or enhance their genes? <laugh>,
I mean, I think, I think it's a really, really interesting question. How do you, how do you construct that as a form of damage and what you, I mean, the difficulty would be that that fetus aren't legal persons, so you wouldn't really owe them obligations legally at that point. But let's say we, we skip over that legal hurdle, you would have to frame it in the way that we currently frame things and actually we don't allow children to do that. To say you can't sue your parent for say drinking out your mother for drinking alcohol was pregnant. And precisely cause it's so damaging to, to allow, there's a number of restrictions in the Lord that stop this sort of inter familial blaming largely cuz it's just so toxic. But let's say you jumped over that hurdle as well, I guess you would have to be able to demonstrate that this was a harm.
And that's really interesting that I didn't go into too much is what do we mean by a harm you have to have damaged somebody. Now with selecting between embryos, you don't have that problem because of course you've chosen different people. So you can't say this person has now suffered a harm. It's like, well, no, that person simply would've been been born, a different person would've been born. But in skipping over that problem, gene editing creates another one, which was you have actually altered the outcomes for a particular individual. And if that outcome is less good than they could, then it would've been had you not changed them, then you are able to demonstrate harm. So let's say you skip the first two hurdles, then you'd be even to very interesting territory.
Okay. Thank, thank you. Um, that, that was a really interesting lecture. Uh, full disclaimer, I work in the gene editing, um, space as well. So, you know, I I found it really quite interesting. And maybe kind of just to build on this gentleman's point as well, I just wondered what your thoughts were on the flip side of sematic versus, um, germline, um, editing. Because I can imagine there could be a scenario whereby you have, um, you know, people that you know have a, uh, genetic, uh, disease and you know, in a normal scenario without gene editing they would have, you know, potentially died at a younger age. They wouldn't have reproduced necessarily and they wouldn't have passed their, uh, genes on, uh, that, you know, the disease disease causing genes onto their children. So in some ways you could look at it, uh, from the other side saying, you know, potentially maybe ger germline, um, engineering is maybe the way to go so that you can maybe eradicate, um, you know, a lot of these diseases for good rather than in some ways maybe proliferate some of these diseases that wouldn't have necessarily been passed down, um, you know, to, to children as well.
So just wondering, you know, maybe what your thoughts were.
No, I completely agree. I mean, I think that's, that is the flip side that I didn't look at. But of course if you, in, in the same way we now keep people alive in with some conditions much longer than they would've previously lived. So of course their, their genetic makeup stays in the gene pool and we, you know, we continue that on. Of course that's a fantastic thing that we keep people alive, but at the same time, we continue particular disease states in the population, that's a problem. And also if we don't, if we can't fully, I think at the moment part of the problem is our understanding of what will happen. So we might be able to see how we can knock out certain things thematically and improve the situation, but unless we can see the full, wider picture of what that person's genome is, that's your concern. And I think that's absolutely right and I think that's one of the problems at the moment is if we're so precautionary that we do nothing, then we lose the benefits. But if it was too cavalier, then there are other problems that we can't foresee.
Perfect. Brilliant. Um, I'm going to call a halt there. Sorry. Um, this is my opportunity to say thank you very much to Professor Gould. She's been our visiting professor of medical law for two years and this is her last lecture today. We are all very sad to see her go, but she's very busy person and we're very lucky that she's been here for two years. So I would like you to join us in a big thank you. And also we get hope that one day we managed to entice her back here to do another lecture because they have been very interesting philosophically, medically, and, and legally. Thank you.