Corey: All right, let’s get going. Our guest today is Professor Sam Kerstein of the University of Maryland. Sam is a specialist in medical ethics, and we’re going to be talking to him today about the ethics of human genome editing. Welcome to Manifold, Sam.
Sam: Thank you very much, good to be here.
Corey: So in the interest of full disclosure I can say that Sam is an old friend of mine. Maryland was the second place that I taught in my philosophy career and the last place that I worked in philosophy. But Sam and I got very close there. We had many, many long conversations in Adams Morgan over drinks and in the philosophy office. And I invited Sam because he’s incredibly knowledgeable, extremely thoughtful, and always gives me very nuanced views on ethics. I see myself as kind of an ethical primitivist, and every time I talk to Sam I realize that my views are a little bit crude, shall we say. But this is our second episode on human genome editing, and we’re going to be discussing the ethics of changing the genome of humans. And we’d like to look at it from different perspectives, because I sincerely believe that this is something that’s going to be coming sooner — it’s already happened, and it’s going to become increasingly common, whether we like it or not. I think a number of countries have passed moratoria on the issue, but like a lot of technology — I don’t know who said it first, but if something’s technologically possible, it’s going to happen. It’s very hard to keep these things, you know, in the bag. So we’d like to talk about the issues that they raise. And it’s especially important now because last year Chinese researcher He Jiankui claimed have created the first two genetically engineered embryos, and they were born — I think it’s now been confirmed, Steve, is that right? that…
Steve: The second… So there were a pair of girls produced, and then it’s been confirmed that there’s at least one other pregnancy, I believe.
Corey: I think it’s been confirmed that they were born, I thought.
Steve: So I haven’t seen that, but it very well might have, I just didn’t know.
Corey: Anyway, the news caused a firestorm around the world. Many scientists denounced what He had done. The Chinese government arrested him, branded him a renegade, he was fired by his university, and nearly everyone expressed horror about it. So I’d like to begin with, Sam, just talking about in general terms what He did, and kind of related procedures that maybe made it more acceptable, Sam. So people distinguish between editing for enhancement and editing for therapeutic purposes. How would you distinguish those two?
Sam: Corey, that is not an easy distinction to make. Here’s one reason why. Suppose you edit an embryo so that the resulting person doesn’t have a certain disorder. The same changes that you make to ensure that she doesn’t have that might enhance other capacities she has, so it might make her have a better memory than she otherwise would have. In the case of the twins and Dr. He, it may well be that those girls have better memory capacity than they otherwise would have, had they not been edited, had their embryos not been edited to make sure they didn’t get infected with HIV.
Corey: So this is kind of a common distinction to make, because I think people often want to say that possibly editing for therapeutics is okay but enhancement is not, and what you’re suggesting is that that line is not very easy to draw.
Sam: It’s not. I mean, think about this. Suppose that we could increase the human lifespan through gene editing. One way to look at that is that it’s not really enhancement, it’s some kind of treatment: we’re letting nature’s gifts shine forth for a longer period than they otherwise would have. On the other hand, some people would say no, that’s clearly enhancement. Let me give you at least one other example. Some vaccines that are given to people are pretty fancy. Now, one way to look at them is that they are enhancing the human immune system. Another way to look at them is to say well, no, they’re just preventing certain harms that might come about and so are a kind of treatment. But I hope you can see that where you draw that line isn’t absolutely clear.
Corey: So I guess I can ask you the kind of blunt question, right? If this line can’t be drawn clearly, and it’s the line that people usually draw in trying to assess the ethics of what He did —Steve, how do you pronounce the name?
Corey: He, how He did…
Steve: It’s like a grunt: “Huh.”
Corey: …He, what He did, what’s your view, Sam, on what he’s accomplished?
Sam: Well I think that he acted wrongly. He did something that was morally impermissible. Why? Not because gene editing is inherently impermissible, always impermissible, but because he didn’t have sufficient evidence that what he was doing would be safe or effective. You can’t just go around making changes like this unless you have a lot more evidence under your belt. That’s by my reading the scientific consensus, and it’s what I believe.
Corey: So I want to push back a little bit, and I think there’s a variety of ways in which you could defend what He did. So me let me give you this argument, see what you think. Let’s look at it not from the perspective of He, but from the perspective of the parents. And we obviously don’t know what kind of deliberations went on between He and the parents, but why isn’t this simply a matter of reproductive freedom? People have a choice about how they want to bring offspring into this world, and people do lots of things when they bring offspring into the world. They choose their partners — you know, there’s a very thriving, normal, socially accepted market of people deciding that they want a certain kind of partner who’s got certain characteristics — maybe they’re tall, maybe they’re smart, maybe they’re athletic, maybe there’s a certain racial group. There’s also a very thriving market in eggs, and so people have a lot of freedom there. And people are also free to reproduce people who are unhealthy, who in some sense they know may pass on undesirable characteristics to their offspring. And I think we have a sense that all that’s okay. There’s no requirement that people reproduce with the genetically best person they can find, so why is what He did in that sense any different than just allowing these people to freely reproduce?
Sam: Well, let me ask you a question. Do you think it’s morally permissible for a doctor to engage in an enhancement on a living child, when what she proposes to do has been proven neither safe nor effective? Is that okay? I mean, is it within the parents’ purview to say oh, I want you to try this thing that’s never been tried on a child, to maybe make her more resistant to something she might get? I think the answer is probably no. Yeah, the parents do have, we think, some kind of protected space of procreative autonomy, but that doesn’t necessarily mean that they can choose for their offspring that they undergo dangerous, potentially very damaging procedures, when those procedures are not necessary for the offspring to have a thriving life. There are other things that can be done to prevent these girls from having HIV or reducing the likelihood that they’ll get HIV.
Corey: All right, let me try another perspective, okay? Here’s another one. I think you’re making a fair point, but here’s something else that has occurred to me, and this is why I’m a little bit cynical about scientists who oppose gene editing. You describe the basic scientific consensus as that you should be allowed to edit the embryo, but that implanting it is impermissible. And this sounds to me dangerously like a kind of obligatory abortion rule, that you’re saying you can actually have your scientific fun with this embryo, but then you have to throw it away. It’s impermissible, actually, to allow this embryo to develop into a child. And if someone’s pro-life, I think they’re going to be very resistant to this idea that a particular embryo is somehow obligatorily to be destroyed. And since we’re not talking about a child that already exists that you’re going to be providing a medical procedure on, if you don’t implant, this offspring won’t exist.
Corey: And so that’s my reaction. Once you’ve edited the embryo, isn’t it permissible — which scientists think is okay — isn’t it permissible actually to implant?
Sam: Well, suppose… I don’t think you believe the following, Corey. I don’t think you believe that just because scientists do something to an embryo, that entails that it’s okay for them to implant the embryo in a uterus. Suppose they really screw it up, and what would be produced is a being who would suffer for a couple of years, then die. I mean, it’s not just the manipulations that would make it a right of theirs to implant the embryo and produce a person, right? So you’re not saying that?
Corey: No, I’m not saying that. If you know that the life the embryo is going to lead is going to be a life not worth living, then you probably have reason not to implant. But that wasn’t the case here, right? You weren’t exactly sure what the outcome would be, but you had no reason to believe this embryo would develop into a child that had a horrific disease that would not be worth living. The balance of evidence did not suggest that, so I don’t think in that case…
Corey: …so in that case it seems completely fine to actually implant.
Sam: Well, first of all, what one might say is it’s not completely fine to implant an embryo where, you know, gene-editing experiments have been done, if there’s serious doubt as to whether that embryo was harmed and so might come out with really, really serious health problems. But look, in the background — and you recognize this — in the background is a big debate about the moral status of embryos. There are certain thinkers, some Catholic thinkers for example, who think of embryos as having the moral status of you or I: embryos are persons. So if you have that view, then, you know, doing these experiments on embryos is itself wrong. So you’ve already taken a big ethical misstep, from that perspective.
Corey: But once you take that misstep, right, which most scientists think is okay, once you take that misstep, it seems like from the Catholic point of view you have a perfect right, you may even in fact be obligated to implant the embryo and allow it to become a person. So if you do what scientists think is totally acceptable, you’re then almost morally obligated to allow — unless you think the embryo is going to become, have horrific damage to it.
Sam: Right. But in the case you’re talking about, I believe that the editing of the embryo is irrelevant. There are some Catholic thinkers who would say look, you produced an embryo, you produced a person. In not implanting it, you are in effect condemning it either to death by being thrown away or — what might be worse — a destiny of being frozen for decades and then being thrown away. So the fact that there’s been some editing of the embryo seems to me not to make a moral difference, from that perspective, in this case.
Steve: So Corey, I don’t want to derail because I think you have a series of, a line of investigation that you want to go through with Sam. But I do want to say that if in fact He was acting recklessly, so taking risks with the future health of these young girls because the intrinsic procedure was unsafe or no one could predict how it would turn out, I think everybody would condemn that. So sort of doctor practicing medicine recklessly is a bad thing, and nobody disagrees with that. I think the harder case, which is the case that’s really going to haunt us in the future, is: technology works well, everybody agrees that it’s likely to work well; parents or physician or IVF scientists decide they want to do something which gives some benefit to the girls in this case. Under what circumstances is that okay through a germline edit? And I think that’s the specific scenario that we’re going to face in the near future, and that I think most of the attention should be focused on.
Corey: I think you’re right, long term. But remember, Steve, to get there you’ve got to go through people carrying out cases like this where you actually don’t know the outcomes, and they’re waiting to see whether the outcomes are going to be positive or not.
Steve: Right. So under the question of what kinds of risks with people’s well-being one should be allowed to take in the service of medical research, that’s also an interesting question; but I think that’s not the one that society is going to fight over for the next few decades, because imagine we get past that somehow and we agree this stuff really works, I can make a superman or I can make a person whose life expectancy is 200 years. Should I do that, and who gets to decide whether I should do that?
Corey: Your thoughts Sam?
Sam: Yeah, those are very difficult questions. And one thing that people are very concerned about is, those with money, with resources enhancing their children, and those children passing on those benefits to their children and thus creating some kind of super class of human beings, and by implication some further underclass of human beings. I mean, we might conceivably get to a point where some human beings, largely because they’ve been from privileged stock, are smarter significantly on average than human beings ever have been. And in terms of how we live with one another, how we live together, that presents some real difficulties. For example, would these far more intelligent human beings have rights that I don’t have by virtue of their greater intelligence? Would they have to be careful with me, be paternalistic with me, take care of me from a perspective of greater wisdom, as we take care of our kids? So there are a bunch of issues that come up.
Steve: Yeah, I think those are real issues, and I think those are not science-fiction issues. Those are issues that we’ll face possibly by the end of our lifetimes.
Corey: So, you know, I think this has raised a bunch of questions. And look, I have no doubt, at least personally, that these things are going to come to fruition, so I think it’s best that we begin to think about them now. And you know, it seems quite likely that what’s going to be edited in the short term may be genes like this, where we know there’s a cognitive effect. But also there may be genes that, they’re going after characteristics that aren’t quite as complicated as intelligence — say, you know, single gene or small numbers of genes involved: you know, someone wants a child with different color eyes, maybe I want a child with green eyes — and in that case it seems that you have to balance essentially the value of the characteristic over the risk that it will pose. So my assumption is early on you’re going to have some discussions about whether a characteristic is really, really needed for the child or not. And this is going to come back to the distinction between therapeutic and enhancing. So if you were to think about characteristics that are probably likely to happen in the near term, I expect they’ll be probably things like immunity to disease. Those I expect to be the ones we’ll be confronted with. And I think they’ll probably be the easiest for us to handle. And there it seems like, just like… I think people think of He as acting rather recklessly, but in that sense I think he targeted one that will probably get through fairly early, just because it is against a very dangerous disease. So does that change — I mean, given the fact we have to get through this period of kind of unclarity, right, it’s not clear how you’re going to get clear about the outcomes except by running this experiment — does that change your view of the current state of gene editing, Sam?
Sam: Well, someone had to be the first test-tube baby, right? And there were bioethicists who said this is terrible, the first test-tube baby is going to be a disaster, he or she’s going to suffer horribly, and that just didn’t turn out to be the case. But the point that I think needs to be made here is that, at least according to my reading — look I’m a philosopher, I’m not a scientist — at least according to my reading, there weren’t enough experiments done to give a reasonable assurance that the manipulation on these two embryos would be safe or effective. More work just needed to be done. So I think that’s a point we need to keep in mind.
Steve: I think what Sam is saying is supported by the fact that the eventual edits that these girls received weren’t the desired ones, I think they were slightly off — again, I don’t know this for sure, but it’s been reported that way — and so that does make it seem like He basically didn’t have full control over the technique that he wanted to practice. And I think that kind of criticism of, you know, guy attempts to do something involving humans and botches it or maybe was overconfident in the likelihood of success, I think there’s nobody who would defend a doctor or a surgeon or He against those criticisms. But I think people criticize him for other things as well, like just having the, you know, desire to actually… You know, if he had a perfectly effective technique and he could have given these girls the genetic variant that protects against HIV — which I think a pretty large percentage of Europeans actually have, at least I think one copy, maybe 10% of Europeans have maybe one allele, one of these, you know — even if he had perfect experimental control over what he was trying to do, still many people would have criticized him. And I think that’s actually a more interesting discussion to me, because nobody’s defending him on the recklessness charge.
Corey: So this is interesting. Early on people were saying, at least he was reporting that there weren’t any off-target effects. You think there’s now evidence?
Steve: So okay, this is something we discussed a little bit in our first podcast on this topic. What I’m about to say is my recollection of what He said at the conference on gene editing in Hong Kong, which took place soon after the news broke. And what he said was that they had done on the embryos, they had done some whole-genome sequencing and had seen some hints of off targets — and by off targets here I mean edits that were very far from the gene that they wanted to edit, so some change in some base pair which was quite distant. It turns out, as far as I understand, those off targets were not realized, that there was a possibility of those off targets and they warned the parents, they actually told the parents hey, there’s some chance of some off targets of that type, and it was the parents’ decision to go forward with the pregnancy even though they had other unedited embryos available. So that’s something that I’ve never seen the press report. This is something He claimed very explicitly in his presentation, that there were unedited embryos available to the parents that they chose, not he chose, but they chose not to use, okay, so that’s a wrinkle to the situation that again…
Corey: This also plays into my view that this is an issue of reproductive freedom.
Steve: Yeah, I agree… on that front, if the parents were fully knowing and, you know, maybe it’s really up to them to decide whether they want to use the unedited or edited embryos. Now, those off targets that I’m talking about are not the eventual problem that emerged. I think subsequently, after the girls were born, they went and carefully, I think, sequenced the actual gene that they wanted to edit, and it turns out the deletion or whatever it was that they were trying to do to give the HIV resistance, I think was not successfully done, or there was some problem with it. So that specific fact, if true, suggests that He was reckless and didn’t have full control of his technique, and I think everybody would just criticize him for that. Nobody’s defending him on those grounds.
Corey: Or he at least had the experimental error that anybody might have.
Steve: That’s true. And the question is, I think Sam might say well, you’d better characterize the probability of that error well in advance of doing it on real people, right? And I think almost everybody would agree on that point. But in the hypothesis…
Corey: But you can’t actually characterize unless you actually run the experiments on people.
Steve: Well, you should do it with monkeys, you know, you should do like a million monkeys, who knows… I mean, we can argue about exactly what is the safety threshold or what is the point at which you have a high confidence level that the thing is working well. But, you know, I think many people would agree that he should have done like at least dozens or hundreds of monkeys or something before he did human babies. So I think that’s not so controversial. But imagine that the technique worked really well, okay, and imagine that he went to the parents and said okay, we’ve done this, so far it’s just another embryo experiment, one of many that have been done, and said to them, now you have a choice: we have a well-edited set of embryos that you could choose to make into your children, allowed to become your children; or we have this other set that we haven’t touched, and they seem to be fully viable too. And then the parents say oh, let’s take the edited ones — and by the way, he also explained in his talk in Hong Kong which, again, this has never been reported as far as I know by any media source — he claimed that the parents involved in this were highly educated people, and that the process took a long time because they had to do the whole IVF extraction process. And so the parents, by the time they made this decision, were very well educated in the relevant genetic technologies and they were highly educated people, and they chose to implant the edited embryos. Again, that was something that was, as far as I know, not reported. So I think that the actual complexion of the moral issue here requires full knowledge of all the facts, which I don’t even claim to have all the facts here, but it’s certainly much more complex than what’s discussed publicly. And by the way, this talk he gave in Hong Kong, it’s online. Anybody who’s interested in this subject, i.e. New York Times reporter, can just go and watch the talk that He gave. And they can say oh, I don’t believe a word He said, everything he said in this talk is a lie and therefore I’m discounting it; but as far as I can tell even that level of analysis has not been done by people who purport to be informing the public on this issue.
Sam: So one question that I would ask, supposing that the technique was perfected, is whether parents were informed, or the general public maybe was informed, that editing the embryos to be less susceptible to HIV might have other effects, like making them more susceptible to influenza or other things. I mean, was that made clear? I think that’s something to be asked.
Steve: Yeah, I think we don’t know.
Corey: And I think that’s actually not just a hypothetical, Sam, as I recall. I think there is some evidence they may be more susceptible to an influenza-type disease. We have to check on that, but…
Sam: Well, there’s a comment that was published in Nature which suggested that. There may well be greater susceptibility to other problems against the background of this particular edit.
Corey: Is that within parents’ rights to make that kind of choice?
Steve: Well, it’s a good question, right? I mean, that’s something I think we’re going to have to decide going forward. So in that scenario where everything works well, and suppose even the science of, you know, what the costs, the positive and negative aspects of having the edit successfully done for that particular girl, suppose that were really well known, suppose we characterized the oh, you have 10% higher lifetime risk of this other condition because of the edit, but you have 90% decrease in risk for HIV because of the edit — still, that’s a trade-off, and then the question is who should make the decision for that trade-off. Do the parents have the right to make that decision? Do they have to get the consent of 80 % of their fellow countrymen before they are allowed to make that decision? Or is it just their right to make the decision? I think these are all unanswered questions.
Sam: Yeah, I agree with that. There are philosophers, and they’re fairly prominent in debate about enhancement, who would say look, suppose you have two embryos and it’s clear, maybe because of a gene edit that’s been done, that one of them is less susceptible to a serious disease than the other, and all other things are equal between those embryos. Some philosophers say that the parents would actually be acting wrongly, doing something morally impermissible, in not implanting the embryo that has a lower chance of getting this serious health problem. So there is among bioethicists some allegiance to a principle of procreative beneficence which says something like, of the children you might have, you’re morally required to have the ones that are most likely, given present information, to be happy, to have the greatest well-being.
Steve: Let me say that I think that those philosophers are in line with basic folk reasoning that humans have been going through for, you know, millennia. So imagine that you’re — for most of history humans have been fairly religious, right? — so imagine that there are actually gods who can influence what happens in our lives, and imagine that your wife is pregnant. Isn’t it evil for you to pray to your god that your daughter will have a higher probability of some sickness, rather than to pray to your god that your daughter be born healthy? Most humans would recoil at a father making that prayer. And it’s very analogous to this question of choosing between two embryos, right? And so I think these philosophers are in line with the way humans have reasoned about this kind of thing for a long time.
Corey: I think in the interest of full disclosure also, Steve should mention that he’s involved in a start-up, actually.
Steve: Yes. We don’t do anything like gene editing, but we do do advanced genetic testing of embryos for IVF clinics. And so this is rather close to the kind of thing that we do in which we deliver a report to an IVF physician, and included in that report could be information as to which of the embryos might, say, have unusual risk for breast cancer or might have unusual risk for type 1 diabetes. And the predictors are now at the point — polygenic predictors — where that kind of risk can be quantified to some degree. And so obviously we think it’s reasonable for the parents to have that information and then make a decision based on that information.
Sam: Well, I actually think that there’s another perspective and it’s an important one at least to discuss, and that is that what’s most important in a human life isn’t necessarily well-being. It might be more important, say, just to put it succinctly, to be a good person than to be particularly happy. And so someone might say look, what would be wrong with flipping a coin, say, between an embryo that seems perfectly fine given your testing, and one that has a predisposition to asthma? I mean, it might be that the one with a predisposition to asthma will be sensitive to human suffering in a way that the other person wouldn’t, and so be better overall. I just think that the first point is that it’s questionable just to value well-being, and not things like being a good person or being a person of good character. The second point is that I think there is too tight of an association made between even well-being and not having certain disabilities. I mean, who’s to say that someone who has asthma is overall less thriving than someone who doesn’t?
Corey: This actually comes back to one of your favorite points, Steve, which is that highly successful people are often sociopaths. And those people who actually may have these incredibly, you know, developed talents often have just glaring moral blind spots.
Steve: Yeah, I mean if you could make the case that there really were a correlation between, say, the person not having type 1 diabetes — which, you know, manifests when people are still quite young — and being a “better” person, then obviously one should consider that. But in the absence of that kind of correlation, where you have a condition which I think everybody agrees is a kind of negative condition to have, and little information about any second-order consequences of, you know, not having type 1 diabetes, it seems like quite a stretch to say that well, okay, maybe you’re just better off in other ways we can’t measure, even though, you know, I think the life expectancy decrease coming from type 1 diabetes is on the order of a decade or something like that, so… pretty big effect for you to just suddenly invoke some mysterious things to compensate for.
Sam: Well, let me ask you a question. Wouldn’t the same reasoning you just used have the following implication? Suppose that there are two people who have some dire medical problem. Unless they’re treated, they’re going to expire. But if the one gets the treatment, she’ll go on living 30 years as a paraplegic; if the other gets the treatment, she’ll go on living 30 years in full health; and everything else is equal between them. Isn’t it an implication of the kind of view that you’ve defended that we should just save straightaway the person who, if saved, would not be a paraplegic?
Steve: So I think, you know, that’s a kind of basic utilitarian calculus and which would come to that conclusion. In this case, you have to remember we’re not telling the parents what decision to make. We’re giving them information, and then they make the decision. And secondly, society is not compelling the parents to receive that information. They are seeking that information out actively.
Sam: Well, they are seeking out that information actively, but are they being told, in a measured and careful way, what the potential is for life with certain conditions? I mean, I’m very worried that in cases where selective abortions are performed, sometimes parents are being given, if only through gesture and tone of voice, the idea that life with a certain disability would be just awful, when through adaptation it turns out that it’s really not awful at all, and that people who have the disabilities thrive to the same degree as people who don’t.
Steve: So, I mean, to take another example which is already, I mean, much more widespread than, say, IVF, or genetic testing and IVF. It’s quite common now through something called NIPT to, through DNA fragments in a pregnant woman’s blood, to determine the effectively Down-syndrome status of the baby that she’s carrying. And so I think in the US, something like 90% or more of parents who discover such a condition in the child that’s being carried decide to abort it, and so that’s a very widespread phenomenon. And so one could criticize this and say maybe these parents don’t know what they’re doing, maybe they don’t really understand what life with Down syndrome is like, maybe they should, I don’t know, undergo a mandatory six-day intensive course on Down syndrome before they’re allowed to make the decision about whether to abort. You know, the issue I think comes down to whether who should make that decision, and then whether the state should intervene in terms of the “quality” of that decision. But I should say that’s going on, you know, around the world maybe a million times a year — well maybe not that many times, but quite a few times.
Corey: But I think you’re exaggerating Sam’s point. Sam’s not requiring a six-day course for anything. He’s just questioning whether there’s bias and how these, potentially these options are being presented to parents, and that maybe people are suggesting low qualities of life when the quality of life may not be that bad. And I think parents probably should know, in fact, that currently quality of life for Down-syndrome people is much improved over what it was decades ago, and you’d think they ought to know that before they made that decision.
Steve: Yeah, I think you could argue that — I’m not sure what exactly is being argued: that we should not allow parents to go through NIPT and make a decision, or that we should try to follow best practices in educating them as to the decision?
Corey: At the very least that.
Steve: Yeah. So I don’t think anybody would dispute that, right? But on the other hand, you know, in most cases parents who are undergoing this kind of thing, they have to understand what NIPT is. If they get the bad news, you know, which is about 1% of the time, I imagine those parents are going to think very, very hard about this decision. I mean, they’ve got a baby on hand, it’s in, you know, the mother is pregnant. This is probably not made lightly, this decision. So, in a way, if you say we should engage in best practices, how could I disagree with that? If you say the state should not allow people to use NIPT technology, then I think you’re just nuts. [Corey laughs]
Sam: The imperative to engage in best practices is somewhat rhetorical. What’s at issue is what the best practices are. I mean, shouldn’t there be a greater emphasis on educating parents, perhaps from the perspectives of people who have these disabilities, what life is like with them? That’s number one. Number two, I really do worry about your use of the term “bad news.” I worry that parents who discover that one of their embryos has a disposition to asthma might think oh, that’s bad news, we’ve got to not implant that embryo. Or the fetus has a predisposition to asthma, that’s bad news because we need to have the best child we could have. Just the term “bad news” is a bit worrisome to me. It’s news, and if you really want to be neutral about a decision you shouldn’t call it bad.
Steve: Well, I think I used the word bad news in the context of a process where I just said 90% of the parents make a certain decision, so I think they do find it to be bad news.
Sam: Well, maybe 90% of the people make a decision partly because they take cues from their health practitioners that that’s the decision that’s expected and respected.
Steve: Are you specifically saying that in the case of Down syndrome, or are you talking about some other hypothetical situation?
Sam: I would say it in the case of Down syndrome, and I would also say it in the case of other…
Steve: I would guess that in most cases it isn’t the outside pressure that is causing most American parents to make that decision in the face of, you know, news that their child is likely to have Down syndrome. I think that most Americans who make that decision actually have a pretty good idea of what decision they’re making. But again, to say that the process could be improved…
Sam: Like being educated about what it’s like to have Down syndrome or a kid with Down syndrome?
Corey: I think if I had the news — and I mean, I have young kids, you have pretty young kids too — I think if I had the news that my child had Down syndrome, I would have made the decision to abort without thinking about it almost at all. I would have assumed, almost right off the bat, that this was going to be a bad life, that I’d be shackled to the child for decades. And I don’t think — as I’m looking back at my decision now, as we’re having this conversation — I don’t think the decision I would have made a couple years ago would have been terribly well informed. I’m speaking personally, right, as an ex philosopher.
Steve: Well you know, first of all, you weren’t actually confronted with that decision, and so, you know, the amount of extra study or contemplation or introspection that you might have gone through when confronted with that news isn’t something that you’ve gone through, right? So it’s very hypothetical what you’re saying.
Corey: Fair point.
Steve: I mean, I think an abortion is a serious thing. And so generally, I think people, when confronted with that decision, where they have a child which, had they gotten different results from the test, they would have been honestly, I think, relieved and been anticipating the birth of their lovely child. And then, so to get that additional news, that different news, and then have to make a very tough decision after that, I think you’ve got to give people some credit that they actually are trying to think and struggle with it. Maybe they go and talk to their priest or their rabbi or their mother and make that decision. I think it’s a little bit… You know, we’re having an academic discussion so we can stake out whatever positions we want, but you’re really in fact impugning the decisions of millions of people around the world, you know, who I think are serious and have undergone a serious situation in their lives that in a way you’re not respecting.
Corey: Well, I was impugning my hypothetical decision.
Steve: Yeah, but in effect you were impugning other people as well.
Corey: Okay guys, I want to switch to another topic which I think is a little bit, again a little bit hypothetical, but also not unrealistic. So I think there’s some evidence that in fact the Chinese government knew what He was doing. And if that’s the case, right, there’s a possibility that they may have been aware of the enhancement possibilities. He claims… People argued that he wasn’t aware of the potential for cognitive enhancement because he didn’t get in contact with scientists who had done that research. But the paper is published, everyone can read it. And so I think one question is, what happens when — look, it’s an incredible advantage to have highly intelligent people in your country, and it’s an incredible advantage to have more than a few — so what happens if one country simply decides to start genetically engineering groups of people?
Sam: I think that’s a great question. What may happen is a genetic engineering race. I mean, it’s great to have a couple of people who are really, really smart. That’s wonderful. Suppose you could have thousands through enhancement. There would be network effects. These really, really smart people would talk to each other, they’d come up with new economic ideas, they’d come up with advancements in technology, presumably, and that would make the government — depending on where you are and how much government is involved — stronger and maybe more powerful. So I think it’s naive to think that enhancement will just be something that individual parents are interested in to, say, get their kids in the best college or make sure they earn enough money or get prestige. I think governments are going to be interested in this, and the justification for their interest might ultimately be self-defense.
Steve: Yeah, I think that’s completely reasonable. I think there’s already a case where, for example, in Singapore they realized demographically that highly educated people were having fewer kids than less educated people — true in many countries, but they sort of noticed it and tried to do something about it in Singapore, where they actually devoted some government budget to try to create dating programs or encouragements or inducements for highly educated people to have more kids. So they’re clearly directionally heading in that direction. Whether they would eventually engage in genetic engineering or embryo selection in that direction I don’t know, but it wouldn’t be inconsistent with what they’ve done before.
Corey: Did it work?
Steve: I think it didn’t work. I think — well, it depends what you mean by work. Did it slightly increase the rate of reproduction of highly educated people? Probably. But did it actually tilt the balance back in that direction? I don’t think it did.
Corey: And I guess this also raises the fundamental question of, suppose one government does this, then what happens to other governments? I think you effectively have the same example of kind of the principle of beneficence on an individual level going to a national level, because — just as it’s important for, you know, if your kid’s going to get genetically engineered, then in some sense to help my kid I’ve got to do that too — and if China’s doing this, then it seems like the US is going to be forced to go down that line too.
Steve: Yeah, I think we could very well have a kind of runaway competition, kind of like with nuclear weapons, where no country can afford not to be involved in this. So that is a real possibility for the future, I think.
Corey: So last thing, I want to come back to the college admissions scandal, and…
Steve: Wait, are we leaving embryos completely?
Corey: No no, there’s a connection.
Corey: So [laughs] we found some parents basically engaging in a lot of shenanigans to get their kids into college, lots of dishonest stuff because, to be blunt, their kids couldn’t have gotten in otherwise. And I guess the question this raises is, down the line is all this going to become just irrelevant because these wealthy parents, they have the means to do this through genetic engineering?
Steve: Yeah. You know, for example, the embryo selection cost — the cost of IVF plus some additional genetic testing — it’s a tiny, tiny fraction of what these people were spending to cheat to get their kids into USC. So yes, once the technology has sort of proved safe and effective, people with sort of long planning horizons, who can sort of think 20 years ahead, would probably be better off doing this than bribing a sailing coach or water polo coach at USC.
Sam: Yeah, I think that’s right. I really worry about our capacity to edit, supposing it becomes possible, in an intelligent way. I’m concerned that upper middle-class and rich parents will edit their embryos in a way that is really predictable, like — what would they do, have kids who are tall, who have certain musical ability or quantitative ability, maybe blue eyes, I don’t know. I wonder what would happen in a free market of editing. Would we lose something? Would there be even more privileging of a kind of narrow set of qualities than we already have? I’m not sure.
Corey: My prediction is that what will happen in the case of editing and selection is perhaps what you already find in the market for sperm and for eggs, which is you find a preference for precisely those characteristics.
Steve: And on dating websites.
Corey: And on dating websites for precisely those characteristics, just kind of put on steroids.
Steve: I think it’s easy to paint the dystopian picture and I’m not saying that dystopian picture won’t emerge, because people are really, pretty maybe short-sighted and shallow in many ways. So the same families that were trying to get their kids into USC, you can’t imagine what kind of edits they would be ordering up from their physician — or rather you can imagine, sorry. [laughter]
Corey: So are we looking at… So we had this discussion last time, when we talked to David…
Corey: Skrbina — yeah, I keep mispronouncing his name, sorry David — about a kind of runaway technology, right? We’re the people who created this technology, and presumably we have free will and so, to some extent, could control it. But, you know, I personally have serious doubts about our abilities to do this once something becomes possible.
Steve: Yeah. For Sam’s benefit, this guy David Skrbina is a philosopher of technology and he was a correspondent with the Unabomber for over a decade, and they’ve actually co-published a book together. And so this guy embraces a philosophy in which he believes that technology is not really very controllable by people. It’s become its own kind of system interacting with humans that could easily run away in directions which are, maybe could cause existential risk to us, or just be very unhealthy for the thriving of people. And so, in this discussion I think he would be very strongly against the idea that any of these genetic technologies should be permitted. But I should also say he’s against, you know, nuclear energy and combustion engines and…
Steve: …AI as well, so he’s definitely sort of anti-technology.
Sam: But we already have gigantic technological development which has produced climate change, right? So we can’t go back in time and change that.
Corey: Oh, he wants to do precisely that. He’s arguing for a pretty radical point of view.
Steve: Yeah. I mean, so Kaczynski was willing to blow people up to, you know, attempt to roll back the clock technologically. And Skribina argues that we should, after thoughtful consideration, decide to roll ourselves back to an earlier stage of technological development.
Sam: But what if we can’t get ourselves back without say, for example, engaging in gene editing in order to get us through a period where there are these much higher temperatures and a lot more diseases out there?
Steve: Yeah, I can’t say… well, speaking for myself, I didn’t come away as a supporter of his thesis. Maybe Corey did… but… [laughs]
Corey: The twelfth century has its virtues.
Steve: Yeah, but yeah, those are some issues that I think are unresolved in his philosophy.
Corey: But Sam, you do bring up the fact that, you know, there are arguments for gene editing along the lines that it’s going to make us better able to survive in environments we may be facing, such as extremely high temperatures. And so that, you know, desire to have your kid be able to not pass out…
Steve: I don’t know if you guys have ever read any of this, but so Freeman Dyson the physicist has written books actually going back 30, 40 years, in which he says probably the way humans are going to actually colonize space is by genetically engineering ourselves to be much more tolerant of zero gravity and high radiation and things like this, so he’s already advocated for this kind of thing for a long time. And so that’s more not the dystopian, but utopian view on this kind of technology.
Sam: Do either of you think that there’s any way to put this back in the bag? I mean, this is going to happen, isn’t it?
Steve: Well, as a guy who’s actually involved in it, yes, I would say there’s no turning — I mean, short of the kind of thing the Unabomber wanted, I don’t think you can turn back the clock. And I think there’s even a coordination problem if, say, ten of the leading nations in the world wanted to turn back the clock, they would have a hard time enforcing it on everybody else. So yes, I think it’s as David Skribina would say, technology out of control, in a sense.
Corey: So I know you guys pushed back on this early on in our discussion, but I want to come back to the next decade or two, where I think we’re going to have to be working out this technology whether we like it or not. So what are your thoughts? Both of you criticize He for what he did, saying it was kind of reckless and, you know, premature. But presumably, if we’re going to get to the future that we think has happened, whether we like it or not, people are going to go through stages of doing experiments, and not just on monkeys and not just on mice. There’s going to be new genetically engineered kids. And at some point… You can keep saying it’s all going to be unethical until it’s finally working, but how are you going to navigate the next two decades?
Steve: Well, I think Sam raised a good example with the early test-tube babies. So people were extremely negative and about that — I think possibly irrationally so, but, you know, if your thought was that the test-tube babies were going to not be healthy and suffer a lot, then to me that’s a pretty reasonable reason to be against it. And so there was quite a risk for the first few, right? You didn’t know how it was going to turn out. But then once it turned out to be okay, then I think it turned out to be quite a beneficial technology for us, and I think a million test-tube babies are born every year now worldwide. We’ll probably have a similar period of time with gene editing, where for the first few — I don’t know if the number is hundreds or thousands of babies that are born through that kind of procedure — we won’t quite know exactly whether it’s going to turn out well or badly for them. And you may be right, Corey, that there’s no avoiding that period of experimentation in order to get to the other side.
Sam: Yeah I agree, I agree.
Corey: So I would just say that in this kind of gray period it’s just that we’re in a kind of ethical Neverland, where the stuff’s not morally acceptable but it’s going to happen anyway, and then as a result of these immoral but evitable experiments we’re eventually going to get to a point where the technology is now solid enough, and then what’s done is ethical.
Sam: No — I’m sorry, go ahead Steve.
Steve: I was just going to say that maybe the three of us could try to think of what the most positive scenario would be that would justify experimentation while the technology is still potentially a little bit shaky, but where the benefit is such that, you know, maybe the parents have some mutation that they really need to have fixed in their child, that you can sort of justify that as a place where you would allow some experimentation to go forward. In the case of test-tube babies, it was these parents have a fertility problem, they would not be allowed to have kids. Somehow we’re allowing them to take a risk with the kid in order so that they can become parents. I don’t know what the best-case scenario is for, in the current stage, for gene editing. Part of the criticism is often that if it is a mutation that needs to be corrected, the parents could instead go through IVF and screen against that mutation. That’s much safer and much more proven technology. So what’s the case for gene editing for reproductive purposes? And maybe the three of us can think of a good example to push it forward. I actually don’t know off the top of my head, because I actually think those arguments that embryo selection is a better alternative right now than gene editing seem pretty strong.
Sam: Well one possibility, I think, is to have a lot of sympathy for parents who both want to be genetically related to their offspring and are both affected by a mutation, such that any offspring they would have, would have some serious health deficit. In that sort of case — and you’re the scientist, you can tell me what precisely we would call them — in that sort of case, in order to really help the parents have offspring that’s genetically related to both of them, would it be true that gene editing would be the only way to go?
Steve: Right. So I think, Sam, that’s a good example. So if both parents are carriers of, say, two copies of a recessive disease gene but somehow have survived — so it’s not fully lethal or wasn’t lethal in their case — and they want to have a genetic, sort of true genetic child, then your only option is probably to edit. And so that would probably be the best argument. And we could probably come up with a disease with really negative consequences for having two copies but doesn’t preclude people reaching reproductive age.
Corey: I wonder if there are cases of blindness that are like this, actually, maybe deafness, although, you know, this wouldn’t…
Steve: No, that would… yeah, you’d get a lot of pushback.
Steve: I’m thinking of something with a really negative health impact, maybe lowers your life expectancy to 35 or something or who knows, but they want to have a healthy kid. So that’ll probably be it.
Corey: So arguably, in those cases it’s plausibly ethical to engage in gene editing.
Steve: Right. Of course, it’s the desire of these parents to not adopt a kid, not use an egg donor, but really to have a fully genetically related child, and so do you judge that desire as important enough that you’re willing to take whatever risks are necessary to try to edit the embryo?
Sam: I can see people saying no — that desire, I can understand the desire, but it’s not that important, I can see people saying.
Steve: It also doesn’t satisfy Corey’s desire, because those are such special cases, right? This is a very special case of a very specific set of mutations that maybe doesn’t allow you to fully test and perfect the technology, because there will be vast parts of the genome that in the future, for the crazy sci-fi applications, you would want to have some experience editing, that might not play a role in these scenarios. So I think you want a full-blown program where, you know, to beat the Russians or the Chinese we have to start experimenting, and we’re going to break some eggs.
Corey: Well but that’s you, Steve, not me, actually… [laughs] But no, look, genes have multiple effects, right? And so it’s going to be very, very hard in many of the genes that people might want to edit to actually know what effect they’re going to have. I mean, you can see the effect on a mouse and maybe in a monkey, but the effects often become full-blown in the case of people, and you’re not going to know that until you edit. So my personal view is that whether you like this technology or not, you’re going to go through a period of real, kind of moral unclarity, where it’s kind of the wild west. And paradoxically, this period is going to get you to a point where the science is better understood, and then what was unethical is going to become ethical. That’s just my kind of prediction, but…
Steve: But, so in this scenario where you sort of want widespread, somehow widespread experimentation is realized, can it happen in a non-totalitarian state? Because most parents who don’t have this very special problem that we were discussing earlier, where both parents have two copies of something, are most parents going to want to do crazy experimentation on their kid? I mean, unless the government orders it to happen, somehow compels people to do it, maybe it won’t be widespread.
Corey: You know, my guess is that — and again, it’s very hard to figure out what you’d do in their situation. I’m not attracted to doing this, let me say, but —
Steve: But you think there’ll be enough people.
Corey: I think there’ll be enough people. The problems I think could often go on in kind of corners that aren’t very well monitored, so there’ll be these experiments that are in fact not controlled, but over time — and who knows, you know, there’s a billion people on this planet, and you can get a fairly good sample size by a very small percentage of them trying this out — but people are going to try this, and the data will emerge in kind of a haphazard fashion.
Steve: It’s fairly low barrier to entry stuff, so if you have an IVF clinic, then to be able to edit the embryo it’s not very much additional capex to do that. And they already have generally some kind of sequencing and genotyping capabilities at bigger clinics, so to check the results and things like that, so — for example, I think the amount of money that He had to spend was not large.
Corey: We edit animal embryos all the time on this campus.
Corey: Presumably you could just do exactly the same…
Steve: …techniques for people.
Sam: You’re not reassuring me.
Corey: [laughs] I wanted kind of, you know — go ahead, Sam.
Sam: No, go ahead.
Corey: Yeah look, I don’t know how we got into this slightly dystopian corner. I find this stuff incredibly unnerving, because I find it hard to get away from the dystopian future.
Steve: Why dystopian? I mean, it could end up that people are living 200 years and have high IQs and, you know…
Corey: I see enormous inequality emerging, far greater than it emerges now. I see the powerful taking advantage of the weak as a result of this. And presumably you could argue that look, maybe even people across the world, poor people, could all have access to this.
Steve: Yeah. Let me make the following claim: that we will — and this is not a normative claim, this is a, I guess a prediction — so we will live through a period, either because of embryo selection or gene editing — I think selection is actually easier — where there is some increased inequality, because some affluent people are able to do it and do it in a pretty aggressive way and get, you know, good results. But then you ask, if you have a progressive country like a Norway or United Kingdom, which has a national health care system — and remember, these technologies are cheap, and we kind of agreed that they can be actually economically beneficial to the society as a whole — what would stop those countries from suddenly making it free, part of your health care system? And then the inequality gap would narrow quite…
Corey: The intra-country inequality gap narrows. The gap between different countries…
Corey: …the inter-country gap, is going to widen.
Corey: That’s my worry.
Steve: There will be countries that don’t get their act together and are not able to implement these programs, right? And so yes, then that inequality will widen.
Sam: Well, there are countries that have only a few hundred dollars to spend per year on citizens for health care. I mean, it’s not a question of getting their act together, it’s a question of, you know, having an act to get. I mean, I just really share Corey’s worry about inequalities between countries.
Steve: …like we currently have. [laughs] But I mean, if you look at GDP inequality.
Corey: But imagine that increasing by a factor of 10. You know, it’s interesting, I was reading some of the philosophical literature on this, and some philosophers are expressing the principle effectively that you’d have to look at the effects of gene-editing on inequality, and you shouldn’t do it if it’s going to increase inequality. And I think that’s a great principle, but it just belies human nature.
Steve: It’s like saying you can’t have a graduate program in computer science because it might increase inequality. It probably does.
Sam: But isn’t there a distinction here where these enhancements would be passed down to future generations? I mean, this is not just an advantage for who’s living now, but who’s going to live. Isn’t that an important distinction?
Steve: I would say yes, it is an important distinction. It’s sometimes overplayed on the negative side, where people say oh, suppose you make a mistake, your descendants are all stuck with that mistake. And of course, in this future that we’re envisioning they’re not, because obviously they can edit back, right? If it turns out not to be a good edit to have made, they could pay and have it gotten rid of for their kids. So that part of it, I think, is overblown a little bit. But to give a persistent advantage to some group of people, yes, that is a real issue that you should think about.
Sam: Actually, the Nuffield Council on Bioethics — that’s a UK outfit — put out some principles on the ethical use of germline editing, their necessary conditions for its being morally okay. And one of them says that the use of embryos that have been genetically edited “should be permitted only when it cannot be reasonably expected to produce or exacerbate social division or the unmitigated marginalization or disadvantage of groups within society.” So…
Corey: What planet are these people living on? [laughter] I mean, it’s the whole point that people can edit their kids! [laughter]
Sam: Yeah, that’s what they came up with. You know, under what circumstances can’t it reasonably be expected that gene editing for enhancement would in no way increase inequality? I mean, maybe their purpose is just to say look, we’re just, in effect, against using these technologies for enhancement.
Steve: Yeah, I can’t say I understand what their thinking is here.
Corey: Or that they’re thinking about people who are different from us.
Steve: Maybe they are just thinking about curing a disease, and then that doesn’t — like a condition that was already present in the parents — and so that doesn’t increase inequality.
Sam: Right, exactly. And maybe they’re implying that enhancement is just a no-go morally…
Steve: But let me throw this out for the two of you. Like imagine that we — this issue of inter-national inequality, that’s tough to solve — but imagine that we had our beneficial world government, Star Trek in the twenty-third century, and the government has been studying gene-editing for quite a while and decided that yeah, actually we can do some positive things for people. If you remember, Vulcans live several times longer than humans, and gee, wouldn’t it be nice if humans could live as long as Vulcans and be as smart as Vulcans? We’ve figured out a way to do that, and we’re going to roll it out to everyone. Anyone who wants it can take it; if you don’t want to take it, you don’t have to take it. Do you guys have a problem with that?
Sam: Well, there could still be a lot of social inequality, depending on what other material factors were involved. I just want to be clear that giving this technology to everyone wouldn’t in itself solve inequality problems. I mean, if a certain percentage of the population owned ninety percent of the resources, making everyone live longer wouldn’t change that. But other things being equal, I love Star Trek. [laughter]
Steve: Well, didn’t you think it was unfair that Spock — you know, the Vulcans are so much better than humans, right? They lived several hundred years, they seemed to be smarter, they have super-strength also…
Corey: They didn’t have any fun.
Steve: They had their own fun once every seven years or something [Corey laughs], they seemed to be okay. But anyway, I think… I was always amazed in Star Trek… So there was this famous episode called “Space Seed” with Ricardo Montalban playing Khan, and he was a genetically engineered human from, you know, 200 years ago. And the first thing he says is “You know, I can’t believe you guys have not improved yourselves after all this time. You have these warp engines and stuff like this, and you haven’t improved yourselves.” And he doesn’t say it in the episode, but in some of the novels he would say something like “How can you guys coexist with these Vulcans? They’re so much better than you” and “Why didn’t you guys improve yourselves?”
Sam: Well, I think Khan himself (to betray a somewhat deep knowledge of Star Trek) is an exemplar for why they didn’t improve themselves, because he is a psychopath! [laughter] He’s smarter, he lives longer, but he has no moral core!
Steve: Right. But then you have Spock, who has a very strong moral core and has all those superior capabilities as well.
Sam: Right. But were Vulcans enhanced, or did they evolve the way they are? My understanding — and I could be incorrect here, I defer to you — is that they evolved that way.
Steve: I’m not… So some of it is of evolution, because they come from a planet that’s hotter and has higher gravity than Earth. But there is some, I think, controversy in the canon as to whether the Vulcans themselves went through some genetic engineering. They’re a much older civilization than ours, so it’s not clear at all what they did to get to the point that they’re at.
Sam: Corey, he mentioned the canon. I’m intimidated, I can’t say any more about Star Trek. Anyone who mentions the canon [laughter], that’s way over my head.
Corey: Well look guys, I think this is a great place to just end our conversation for today. But Sam, I hope you’ll be back. This was a fabulous amount of fun, and I honestly think these are conversations we need to keep having.
Sam: Thank you very much!
Corey: All right, thanks a lot. talk to you soon.