Podcasts

Big Decisions (Base Pairs Episode 12.5)

Following up on the last Base Pairs episode, “Good Genes, Bad Science,” we hear from David Micklos, executive director at CSHL’s DNA Learning Center, and Miriam Rich, CSHL Archives Sydney Brenner Research Scholar, on some big ethical questions.

Who will use CRISPR to alter their child’s DNA? Who gets to decide which traits are desirable? Following up on our last episode, “Good Genes, Bad Science,” we hear from David Micklos, executive director at CSHL’s DNA Learning Center, and Miriam Rich, CSHL Archives Sydney Brenner Research Scholar and doctoral student at Harvard, on these big questions.

Full transcript

BS: Hey, everybody. I’m Brian.

AA: And I’m Andrea.

BS: This is our fourth chat episode—fifth maybe? I don’t know. But regardless, it is about a really cool episode we just had about eugenics. So what is eugenics, Andrea?

AA: Eugenics is basically the idea of good breeding, or good genes. And that might sound like a good thing, but it turned out to be a very, very destructive thing.

BS: And you say “turned” because this is actually history. This is American history, and not too long ago either.

AA: Right, we’re talking about, you know, the early 20th century. Especially—the American eugenics movement really peaked around the 1920s, and that’s when laws that made it legal to force people to undergo these surgeries that prevented them from being able to have children started going on. And it was all in the name of improving the gene pool in the country and making sure “defective” genes did not get out into our society, basically.

BS: And now, in this modern age, we’ve got a means to improve gene pools, again, very efficiently and most importantly, accurately.

AA: Right, for those of you who may not know, there’s this totally revolutionary genome editing tool called CRISPR that makes it possible to make very precise changes to DNA. But the issues that people are really talking about with using CRISPR, in human embryos in particular, is what does it mean to be able to have this precise control over whether your baby is going to have the gene for a particular disease? Or, if we get to the point where we can pinpoint certain genes for, say, intelligence, what if we can make sure that an embryo has those? And that sounds like completely new territory. And that’s really how I was thinking of it before I talked to Dave.

BS: That’s Dave Micklos, executive director of CSHL’s DNA Learning Center.

AA: Yes, and he knows a lot about eugenics because he was the creator of the online eugenics image archive, which you can go check out at eugenicsarchive.org. But that, as you can imagine, has really changed how he looks at a lot of things, having all of this historical knowledge. And even things that we’ve come to kind of take for granted in our society right now, like, you know, in vitro fertilization—it’s a pretty common practice—he really changed the way that I think about it.

(in clip) AA: Hearing all of these ethical discussions about using CRISPR in human embryos, what goes through your mind?

DM: Oh, everybody’s going to do it. Whatever technology becomes available for parents to do better for their children, parents will do. 100%, it’s been that way forever. Didn’t your parents want to give you certain kinds of lessons and help you be good at piano or voice or dancing or whatever?

AA: Oh, yeah.

DM: Yeah. They did whatever they could to give you a better life and they would buy you anything. How about if they had the opportunity to buy you slightly better genes, and they had the money? Do you think your parents would have done that?

AA: Yeah, probably.

DM: Yeah, forget about the whole difficulty of it and …

AA: Oh, yeah, of course but if … breast cancer runs in my family, if my mom could have gone to the doctor and said make sure my daughter doesn’t have the BRCA gene …

DM: And she wouldn’t care if it was gene editing or hocus pocus, she would do it because she was a good mother, and that’s what parents do, is they take care of their kids. So, of course, if their technology that could make your kid suffer less or prosper more, any parent will do that. So to say that people aren’t going to make use of genetic technology is a lie. Great example of—we have lots and lots of people now delaying child birth, and because of that, more reproductive problems. Lots and lots of people doing in vitro fertilization.

So let’s just take the case where you’re fertilizing these eggs and you can know anything about one egg over the other. So let’s say that there’s six fertilized eggs there, you come from a family that might have a history of breast cancer. You’re certainly not going to take any of those fertilized eggs that the data suggests might carry breast cancer. You’d be a fool to take any of those, right? And of course, you wouldn’t. How about if you could know just a little more information about any one of those six eggs? Like there’s a combination of genes in this egg, egg #1, that have to do with developing a nervous system, and we’re not sure exactly how that works, but they could make your nervous system go together better, develop better, function better. Maybe give you a smarter person.

Would you, knowing that egg #1 had that better combination of genes that just might give your kid an advantage but not cause harm, would you just ignore that information and just say, “No, I’ll just take a random selection, just close my eyes, and I’ll select one,”? No, of course, you’d have to as a parent choose. So to think that anyone’s not going to use genetic technology when it becomes available, there may be laws initially and people will have these moral problems about it, but the only real moral problem about having a better child is when does the technology become so expensive that it becomes one more way of disadvantaging people?

BS: Damn.

AA: It’s hard-hitting.

BS: That is super hard-hitting. I mean, I can’t argue with it—I can’t! I know exactly—I think about my own parents, and I say, “of course they would do that.” Any parent would do that. There’s always this line. Everybody draws a moral line somewhere and if there’s one thing that will make you push that line—we see it in movies, we see it in books, we see it in real life—is if it’s for the sake of your kids.

AA: Right. It really—it’s hard to argue with that. But then, you have to think about it at the societal level. If everyone’s making choices like that, what does it mean? Or if only a select group of people, like Dave was saying, like very wealthy people get to make that choice, what does that mean? And that’s something that really came up in my conversation with Miriam Rich, who is the CSHL Archives Sydney Brenner Research Scholar for 2017 to 2018, and she really helped put in perspective what kinds of warning signs we need to be looking out for when we have these conversations—especially these conversations that talk about what kinds of traits are desirable and which are not, and who gets to decide that.

MR: I think any conversation that is predicated on or trading in this idea of identifying some traits as desirable and others as not should really be extra aware of this history, and sort of have a heightened awareness of the potential for those designations to entrench existing prejudice.

AA: Right, I think about the example of deaf people. And, you know, a lot of people who are not so familiar with the deaf community might say, if we can fix deafness with CRISPR, for some people at least, people who have, you know, genetic conditions that lead to deafness, then that’s great! We should do that. But a lot of people in the deaf community would not argue that their deafness is an impairment at all, and in fact would say that it’s something that enhanced their lives.

MR: Yeah, I think that’s a really powerful example, and certainly there have been critiques from a variety of disability communities about just that issue of certain types of disabilities being labeled as “impairments” or something in need of correcting by certain discourse, and not recognizing them as in fact sort of human variants that can be accommodated and in fact enrich a society.

AA: Would you say that ultimately it has to be a personal decision when it comes to deciding how to use a new technology that affects reproduction, or is it more complicated than that?

MR: I think it’s probably more complicated, just because even if, sort of, the use of reproductive technologies are personal choices, sort of, the conversation around them and the assumptions people make can contribute to a climate in society or to a prevailing vision or perspective in society that affects how people living with, for instance, disabilities are treated. Even if, sort of, the widespread use of reproductive technologies is something that’s framed as individual choice, it’s still affecting a society that everyone lives in.

BS: Yeah, so again, this is another heavy thing to think about and it kind of works with what Dave was saying, which is that we might start entrenching certain cultures or groups associated with disability, maybe because they don’t have the means to support disability or because they don’t have the means to avoid disability. Basically, if groups of people can’t afford genetic screening and other groups can, is disability going to become a burden of the poor?

AA: Yeah, and not only does disability become solely a burden of the poor, but the wealthier people in our society get to choose which disabilities are truly an impairment. And as I’ve learned, many people in the deaf community do not see deafness as an impairment even though it is a disability. And with a sufficient amount of support—things like putting captions on your videos…

BS: Something we do!

AA: Yes, something we do! Putting up transcripts of your podcasts—these sorts of things. You know, if these communities get smaller and smaller and these ideas become more entrenched that this is an impairment and something to be gotten rid of, what are we losing there?

BS: And obviously, we don’t have answers.

AA: No.

BS: We’re kind of trying to look to the future and go, “ok, if this happens…” kind of thing. In this case, we’re almost gadflies. We’re like Socrates right now. We’re just poking holes into potential problems without any solutions on hand. If anybody wants to tell us what they think, please comment on our podcast, let us know, we’d love to hear from you. Even tweet at us @CSHL.

AA: Alright, everyone. Thanks for thinking some really deep thoughts with us. It’s been fun and eye opening.

BS: I love conversations like this. And I hope we can have more of them here on Base Pairs. We’ve got one more episode this season.

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Extra for Episode 12.5:

This episode of the podcast Beautiful Stories From Anonymous People is what got Base Pair’s co-host Andrea Alfano thinking about who decides which traits are desirable and which are not. The caller you’ll hear from in this episode is deaf, and explains why he and others in the deaf community to not see their disability as “something wrong with them.” It’s a great way to dig deeper into the ideas we discuss in this chat episode of Base Pairs.

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