Base Pairs episode 12.5: Big decisions

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 cancers 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, because 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. Well, when you fertilize a bunch of eggs in a test tube, you can of course check for diseases that might be in your family that can be readily tested for, but soon you’ll be able to test for things that might have something to do with intelligence or athletic ability.

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: Others have raised moral problems besides this one, for sure, but I can see why this one really stands out for Dave. People who don’t have a lot of money already have a hard enough time catching up with wealthier people. If CRISPRing your kid becomes an option that only the wealthy can afford, that will give them a whole new competitive edge over poor people.

AA: And there’s even more to this issue of disadvantaging people than just wealth. The big question for me is, who should get to decide which traits are desirable and which are not? Like we talked about in the full episode, science can’t exactly tell us which traits are good or bad, because these are subjective and very personal judgments. I spoke about the dangers of labeling certain traits as desirable and others as undesirable with Miriam Rich, the CSHL Archives Sydney Brenner Research Scholar who spent a lot of time in our eugenics archive for her doctoral research.

MR: I think any conversation that is predicated 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 a lot 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 that is dedicated to inclusion and diversity as opposed to correcting what it sees as undesirable traits.

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.

So I think that certainly personal choice is an important aspect of this conversation. I think everyone would be uncomfortable with the idea of this being an imposed or mandatory technology to use but I think it doesn’t by itself solve or address all the potential problems or critiques that people might have.

Even if it’s an individual choice, just recognizing that we all live in—again, live in a society that is shaped by social prejudices and inequalities—individual choice can be shaped by that. If we live in a future or in a present in some cases where certain traits can be selected against because they’re seen as undesirable in the context of a social discriminatory society, are we using this technology to further entrench that social prejudice in those cases? I think those are very hard questions to answer, and part of the reason that there needs to be such robust and reflective conversation around these kinds of issues.