Gene Editing: A New Legal Frontier

hello so welcome today is my third and final lecture in this series um of lectures in medical law and ethics and I'm going to 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 and I'm not going to make this particularly legal some of my previous talks been quite legalistic this one I really want to talk to you mostly about the ethical issues and the considerations that we might want to think about and when we're thinking about what to do with this new potential now I'm going to focus on human gene editing but there are lots of uses Beyond this it's used in Plants it's used in treated dealing with diseases all sorts of things but I'm going to 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 want to give you a sense of the range of uses to which we might put the technology and what we'll do 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 want to 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 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 they mean recently developed technologies that have vastly improved our ability to be precise in the way that we edit genes or genetic material 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 and 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 color 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 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 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 carton and then and add some DNA and they do this by what's called an enzyme that's called an engineered nuclease this is where it will get slightly scientific but bear with me not for too long and 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 your add in some DNA there now we've been able to do this for quite some time we've used a range of these over time Mega nucleosis is one example zfns zinc finger nucleases Talons 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 palindromic 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 enables us to do something that we couldn't do before in a sense we can be really precise really selective and really efficient that's one Starbucks is I'll 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 and pathogens specifically it destroys nucleic acids from those pathogens so bits of genetic material saying viruses that invade them so a good example is the streptococcus bacterium 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 grna and it finds 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 we can use our own engineered RNA so essentially we create a template of RNA that picks the bit of DNA that we want to 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 bringing 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 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 in memo sharp NTA and Jennifer dudner were awarded the Nobel 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 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 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 going to be passed down in reproductions eggs sperm fertilized eggs now the reason this is an important difference 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 their 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 somatic cells neither of those things are true the other key thing to be thinking about when you work 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 want to 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 gametes or the embryo that they produce we also however will amend cells or want to edit cells in people so people not Embers but people and there we would ask the question of of course whether they're an adult or a child because 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 a 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 gametes there isn't a person there is if you think an embryo is a 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 and there isn't a legal person yet but there might be a moral person in some sense but what you're 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 embrace is exactly the kind of thing that hits the head has hit the headlines so in 2019 Gene editing hit the headlines when haired young Q reported that he had edited the genes in two embryos that 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 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 and in particular the potential harms and damage he might have done 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 who expert advisory committee which is to develop Global standards and strategies for governance and oversight of human genome editing and in China they have criminalized practices relating to genetics a very specific natural responses as well as International responses so before we delve into some of the the complex ethical issues that this creates I want to 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 and so what can it do now well one of the really important useful things we can use things like Chris before is research so it's hugely valuable in enabling us to understand Gene function give 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 so a good example is the burgers lab in the United States is studying deafness and it does it by focusing on genes and zebrafish that things are involved in hearing and it knocks out different genes and then studies the function of the of the fish another good example of something that crispr enables us to do is it enables us to 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 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 this 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 they can create a knock-in 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 and so you might have heard of Layla Richards she was the first person successfully treated with genetically edited immune cells which eradicated her leukemia so they took cells from her body they edited them and they put them back into it so she infused them back into her and it enabled her body to destroy the cancer cells that were affecting her and other children have been treated since we have also know there are trials where Chris 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 lawyers think about 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 and how diseases work and how conditions work so we know a lot about how some diseases work 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 another barrier at the moment is cost Effectiveness and how well we can sequence genomes and manage the data demands that it involves and there are also lots of complexities about trying to work out what the impacts will be in terms of we may knock out a genome we might think that's going to 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 petite 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 so this if anybody has 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 different kinds of people and that's one of the great worries and that people have and so we will look at that so the questions at the moment we have a we have a legal framework we have the gtac saying certain things are prohibited and they're 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 in a number 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 on adults or children or embryos or gametes 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 there 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 want to do is try and explore some of those and think through a couple of them but it would be on the scope to think about all of them the first I want to think about is this idea of germline Gene editing and the particular issues that that creates now in the wake of janku's work being revealed and the community the scientific Community being appalled of what had happened there was a call for pause so this is Fang Zhang saying the moratorium that had been called for as a poor Society needs to figure out if we all want to do this this is good for society 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 reports 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 a 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 of somatic cells germline changes are arguably going to 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 status quo bias we might decide well it's better the devil you know but on the other hand we might be thinking 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 what are these benefits going to be shared with everybody will it exacerbate 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 going to talk about relate only to German and some relate to somatic and some relates 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 well-being so somatic treatments clearly have huge benefits in terms of improving People's Health so a good example is ctla-4 insufficiency this is a disease where the T cells don't function very well and essentially you have the immune system attacking your own body put simply and the current treatment of that is bone marrow transplants which are painful they're unpleasant and 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 and then they will stop behaving abnormally now the reason this will be a great treatment is it would be easier it's Hospital time less unpleasant there's many many examples of that already happening in the literature so we know that it will increase increase health in that sense through somatic treatments we also know that it's going to 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 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're essentially selecting amongst people and we'll come to some of the concerns that the disability the disabled Community raise about selecting amongst persons and choosing the ones without disabilities or if you don't choose to do that and you take pot luck then they might be in the position of then 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 will 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 Health Care system and increasing population health so there are many obvious benefits there but there are of course some downsides and one of those that I want to talk to you about in some just um detail is this idea of eradicating things now I've talked previously about vaccination and the idea of 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 want to think about what we mean by a disease and what we mean by a disability and that's what I've had with this disease disability and difference because the bright lines that you might think exist between what is a disease what is a 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 they're 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 and this might be welcome there might well be can conditions of which there are many that this will be a good thing 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 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 Behavior and there are things that we clearly class as diseases things like Huntington's disease or early onset dementia cardiovascular disease we could 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 as a harm is where I want to start so disease we usually tend to mean something that is inherently problematic disability is where it gets more complex so this is the philosopher Janet radical of Richards and she's taking 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 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 they're 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 we need to think about the other sides this to this View and one of those is that disability eradication is a form of discrimination so this is Heidi Crowther that you might have heard of she recently brought challenges to the abortion act on the grounds that and the provisions in the abortion act that allow for termination on the grounds of disability but not other Grounds was discriminatory against people with disabilities so she specifically has downs but this applies to to other um other disabilities as well and one of the first questions Suppose 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 some things 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 protesters are talking about when they're saying don't screen this out what they're referring to is Nip testing which is a much more targeted and 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 the the fetus 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 and for many people in the disabled community and we know studies show and also we could just work it out just by thinking about it they experience this as hurtful and distressing because essentially it's saying your life your qualities equality is not desirable they are qualities to remove and that we will be better off without people like you 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 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 account 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 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 when you're thinking about what are we going to eradicate how should we use this editing technology is the idea of disability is 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 quite a lot and I find it really powerful where he says I can't bring myself to say his dyslexia is pathological and he talks about how Tom is a big picture person he's intuitive my particular very spiritually 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 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 thinberg 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 to do what she does and to enable her to do what she does so when you're 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 difficulty difficult we should get rid of them the second thing to think about in terms of what we do with Gene editing is the idea of Health inequities so this is disability adjusted life years and you can see that there are some countries where people are much likelier 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 editing 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 they have been calls internationally for when we deploy this technology to be thinking about how can we ensure that it doesn't exacerbate existing Health inequities it might cut in the other direction it might be cheap and accessible and it might eradicate diseases that can't be treated very easily in some countries where life life expectancy is much lower and it may be incredibly valuable 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 this we need to bear that in mind as well the next thing to think about when we think 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 and in that sense if we were going to allow parents to make choices about editing their embryos or their gametes if we're really committed to reproductive autonomy and we really thought the parental choice and individual choice is very important then we will allow parents to make their own choices now the reason we do this is because we think people do mostly have strong feelings about the children that they are going to give birth to and it's also a good thing in some ways 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 a lot of weight and that's what we largely do in some ways at the moment in terms of the children people have but we do already legally limit certain things that parents can do so the hfea ACT limits lots of choices that you can make and we have limits on when you can terminate pregnancies and these are about 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 soon to be possible and we need to think about whether or not we throw it 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 and telling us what to do about what sorts of children we have and what where the legitimate bounds of it telling us what we're allowed to do are and we might also think when the government's doing that when the state's doing that it creates impacts so if you think about say the limits in the abortion act on when you can and can't terminate that's exactly what crowther's point is is she's saying that because termination is allowed on disability grounds and because we regularly offer people testing determine whether or not a pregnancy is affected by Downs what we've created in this country is a widespread termination eradication of downs so collectively parental choices have led to there are 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 and 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 because that person doesn't exist yet but we won't delve into those murky Waters today but we do need to think about what this has an impact in terms of society but also the expressivist problems the message it sends to the disabled community and so on and one particularly interesting element of this that we'll 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 want to have another child we say 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 see 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 as 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 is to give you the idea first thing to think about is 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're thinking first about what should we enhance think about what happens if we all make particular choices so particular particular enhancements and but so let's take as an enhancement being tall so we could enhance so that we're all taller now being tall is actually associated with better life outcomes 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 you take it from me being six feet tall it's good and it's bad but largely people think being tall or a particular height is a good thing but it's Distributors 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 become 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 of 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 foot ten being around about five foot ten 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 same but it shifts in a particular way or do we mean making all of us amazing everybody gets hugely increased to capacity is 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 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 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 enable us have experiences that we couldn't had before you 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 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 it might be really big downsides to enhancing ourselves and one of those concerns is Michael sundel so Michael sundel 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 Drifter 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 is valuable in the way that we interact with the world and and that what we shouldn't be trying to do is control our existences that that damages our relationship with nature from the world now an alternative way to think about this yeah so an alternative way to think about this is guy cahane and Julian save Alaska 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 something so 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're 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 sandel is suggesting in a sense that there's sort of some naturalness to us and 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 and that's of value and significance in the way that we exist that he's taking sundel'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 Kane and serverless you make I think they're very good point you say 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 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 gain things from dealing with adversity and so on is is how it should be fails to account for the fact that war that assumes that people have a good balance at least a sufficiently good balance their lives are not too difficult for them but as 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 and we wouldn't really much of medicine we wouldn't do at all we would say well that's how it is and we should just leave it as it is and in fact you're 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 is the argument that ends ends 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 is the idea of the impact on the parent-child relationship so sandal again 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 will 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 this teacher's 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 intentionally that there is one love that we have in the world which comes purely because we are ourselves 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 edit embryos as a slightly lay 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 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 if 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 in lots of choices we already make that we are under pressure to compete essentially with one another by doing certain things to come to conform to particular norms and the final thing to think about is this idea of a right to an open Future so the other strand 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 there's 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 speculative 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 is 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 want 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 genetic reductionism it's assuming that genetics Drive everything about us which is absolutely not true at all but it will 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 to design their own Futures and there are arguments to this essentially offends against their human dignity um is that true will people feel that way there's certainly one can imagine that some people would feel that way and 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 because 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 us as a community and we need to recognize that once we start down a particular path it's very difficult to stop but we need to also be mindful to be really problematic if we avoided 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 aware of the possibilities for state-to-square 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 and when we're 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 what we want to be and what our relationship with our natural selves should be now at this stage rightly organizations like the nuffield council and the organizing committee at the summit on human genome identity 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 somatic 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 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 [Applause] 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 slideshow 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 that I would like a perfect smile but I'd like everyone else not to have it and then I don't have one 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 responses 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 yeah 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 yeah 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 will have to bear in mind that 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 socially local what we value in our society might be different to other peoples as well the idea that you could 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 become much more marginalized that we get these sort of I imagine we get some silos of traits would be a problem as well Brave New World yeah yes does it sorry does anyone in the room have a question oh yes slots the lady here sorry I like to presume my own perspective because I'm a scientist what you said has opened my mind now what I'm going to say is that Genetically Enhanced 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 brain 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 rule to say we all have to follow suit because we end up as a clone scientists have already stopped cloning sheep when we knew we could do it so why do we destroy ourselves why do we destroy our Gene pools so this is not only an ethical issue this is for our survival that's my view thanks can you invest your time when a child will be able to sue their parents for electing not to edit or enhance their genes laughs 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 the fetuses 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 so say you can't sue your parent for say drinking out your mother for drinking alcohol pregnant and precisely because it's so damaging to a there's a number of restrictions in the law that stop this sort of inter-familial blaming larger because 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 a really interesting that I didn't go into terrible what do we mean by harm you have to damage 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 have been born a different person would have been born but in skipping over that problem Gene editing creates another one which was you have actually altered the outcomes from a particular individual and if that outcome is less good than they could than it would have 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 move

2023-04-29 06:08

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