CODED: Genetics
CODED is a podcast brought to you by Genetic Support Foundation and hosted by Katie Stoll, MS, CGC and Dr. Stephanie Meredith. We explore the most pressing issues at the intersection of genetics, healthcare policy, and bioethics. CODED will be of interest to healthcare professionals, policy makers, and anyone interested in understanding how advances in genetic medicine are reshaping healthcare delivery and society at large.
CODED: Genetics
Echoes Of Eugenics In Modern Tech
"Super babies," subway ads, and “ best baby” promises are grabbing headlines, but the story underneath is older and more complicated. We sit down with seasoned genetic counselors Laura Hercher and Bob Resta to unpack how early eugenic ideas are resurfacing through modern pronatalism, IVF add-ons, and polygenic embryo selection—now marketed as responsible parenting and better public health. The conversation pulls apart the science, the sales pitch, and the social stakes.
We start with a clear primer on positive and negative eugenics and how today’s rhetoric reframes “optimization” as health while centering IQ and status. Laura and Bob explain what preimplantation testing can do for known single-gene conditions and why polygenic scores for complex traits fall short, especially between sibling embryos. They detail the gaps in predictive power, the ancestry biases, and the way slick messaging leverages parental fear. We explore the costs and emotional toll of IVF, the push to make embryo screening a default choice, and the subtle shift from autonomy to judgment—decline testing and any “bad luck” becomes “earned.”
The stakes go beyond the lab. We talk about disability, dignity, and how lives exceed a genome. Culture and policy shape outcomes as much as DNA—funding, inclusion, and real support matter. We examine the tech elite’s fixation on IQ, the comfort of genetic determinism for the newly powerful, and the risks of chasing outliers like “tallest,” “smartest,” or “chillest” as if those scores define worth. Throughout, we highlight the counselor’s role: translate limits honestly, differentiate risk reduction from speculative enhancement, and resist hype with clear, humane language.
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Genetic Support Foundation: https://geneticsupportfoundation.org/
Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/
Okay, well, greetings and welcome to the Coded Podcast. I'm Katie Stoll, Executive Director at Genetic Support Foundation.
SPEAKER_00:And I'm Dr. Stephanie Meredith, the development director of GSF and the supervisor of our letter case National Center for Prenatal and Postnatal Resources. And today we're going to examine how the shadow of 20th century eugenics can be found in modern reproductive technology and the pronatalist movements. And so we're so excited today to have thought leaders in the genetic counseling community, Laura Hercher and Bob Resta, who are our friends and colleagues, help us to unpack the history, the hype, and the deep ethical questions shaping this moment. And just to give a little background on GSF, right now, we are heading into December, and GSF relies on generous donations and grants to be able to speak out about ethical issues in genetics, provide financial assistance for genetic counseling services across the U.S., and also send out free educational resources to new and expectant parents of children with genetic conditions. So please keep us in mind as you're considering end-of-year giving for nonprofits because we really appreciate being able to do the work that we do. And still hearing from me now for our overview about what we're going to talk about today. At the dawn of the 20th century, eugenics emerged as a dark and yet disturbingly popular social experiment. It was a pseudoscience that promised to cultivate a better breed of humans by encouraging the right people to reproduce and forcibly sterilizing those labeled as unfit. In its early days, eugenics was supported by some of the most prominent figures in society, and state laws that equated moral or social challenges with genetic inferiority were put into place. It was a worldview that ignored the messy interplay of environment, inequality, human dignity, and even how genetics actually works scientifically. So today that old notion is being reborn and cloaked in the language of pronatalism, reproductive technology, and genetic optimization. So sounding very, you know, efficient. And there's this growing movement backed by some tech elites and reprotech entrepreneurs that proposes raising smart, healthy children through embryo, selective embryo selection, and also prosing that as being acceptable and socially responsible, even. Proponents argue that these practices will lead to stronger economies, better national futures, and improved population health. But that vision really carries a chilling echo of past injustices and sounds like a lot of recycled terminology that and phrasing that we used back in the early 20th century. Critics warn that selective breeding approach can reduce children to just the raw materials defined by their potential genetic traits rather than their humanity, and threatens to undermine the value of diversity, compassion, and the disability community. This perception ignores the impact of nurturing, and geneticists also argue that the science itself is dubious and that selection for a child's potential characteristics might not truly be feasible anyway.
SPEAKER_01:So today we are joined by two incredible guests. Laura Hersher is a leading genetic counselor, educator, and writer, known for her sharp ethical insights and long-running work analyzing trends in genetics, disability, and reproductive decision making. She is a faculty member of the genetic counseling training program at Sarah Lawrence College, and she delivered a standing innovation presentation at the American College of Medical Genetics and Genomics Conference this year on the current impact of eugenics on the national psyche. She further co-hosts the popular blog, The DNA Exchange, with Bob Resta, who is also joining us here today. On that blog, Bob brings his wit, depth, and historical perspective to the field. Bob is a pioneering genetic counselor, writer, and commentator whose decades of practice have shaped the national conversations about ethics, disability, and the human side of genetics and medicine. And we welcome you both here today and thankful for you to help us examine how the ghost of eugenics may be shaping the future of reproductive technology parenting and what it means to value all lives. So um historical context. I know I feel that recently I've seen and heard from you both on different aspects of this topic. Bob, I always think about the historical perspective you could bring. So maybe you could just open up here with a little background about what you see as the core principles of 20th century eugenics and specifically maybe focusing a bit on positive eugenics.
SPEAKER_03:So is pioneering a euphemism for old persons?
SPEAKER_02:Wisdom. It's wisdom, Bob.
SPEAKER_03:Oh yeah. So core principles of eugenics, you know, there is no widely agreed upon definition of eugenics, at least one that's workable and reasonable. But generally the idea is my genes are better than your genes, and you shouldn't be reproducing, but I should be.
SPEAKER_04:Well yeah, I mean eugenics, the word hopnosis was coined by Francis Galton, Darwin's cousin, back even past the 20th century, way back in the olden days, the notion that it would breed sort of a bring sort of a breeder's mentality to humans. That the idea was that through selective use of reproduction you could create a superior person. And so the initial floating of that notion was what Stephanie just referred to as positive eugenics. That was Galtonian eugenics. He was not particularly interested in breeding out disease or getting rid of inferior people. And I would say that came from where he was as a as a sort of an upper class person in a heavily classed society. What he was most concerned with was to create a rationale for why the people in charge were sort of meant to be in charge, you know? They were superior people. He was much more interested. Literally, his book was called Hereditary Genius, right? He was interested in creating this genius, this sort of Superman, emphasis on the man part, because that was definitely a piece of it, uh, who would be in charge. And the flip of that was that if there were superior people in charge, if it was genetically mandated who was going to be successful, who was going to be this person of excellence, you didn't really need to get rid of everybody else, but you also didn't need to help them either. You didn't need to provide any resources for them because they were not the agent of a successful society. So hand in hand with this notion of positive eugenics went notions of like limited social resources, limited uh interest in education, all of which is feels very relevant in this particular moment in time. But what caught on in the United States in the earliest part of the 20th century was what we usually refer to as negative eugenics, which was to say an aggressive weeding out of what were seen as bad traits. Now we probably call them bad genes, then they would probably have called it bad blood to get rid of it. And so interesting to me, I've always thought of one as a Mendelian point of view and the other as a Darwinian point of view. Like one is pushing the species towards this theoretical excellence. But I always say this, it's Galtonian Darwinianism. So in other words, Darwin was about creating variety, right? And Galton talked about sort of, you know, breeding towards an ideal, which right away, right off the bat, sets up the idea that there's one ideal human being, and that's what we should all be striving to be, which is really the core sort of problem here that we're dealing with. But what happened in the United States with the negative eugenics is it picked up in a number of ways, which really didn't end well in any case, marriage restrictions, immigration restrictions, and sterilization. And American-style eugenics moved to Germany, where it became even more aggressive and ended up with, you know, sterilization of what people thought of unfit people, and then sort of directly into the Holocaust of, oh, the real answer is to just get rid of people whose genes we dislike. And the result of that was so horrific that negative eugenics has carried with it this taint. And you won't see people say, I'm pro-eugenics. There's a little caveat to that, but you won't mostly, because eugenics, really, as a word, has come to mean the thing we don't like. A lot of things we do and accept are eugenic by the sort of simplest definition, but we come to use the word as meaning the things about reproductive control that are distasteful to us are by definition eugenics. So it's kind of like, yeah, when you talk about paternalism, is it bad or yeah, it's bad by definition, right? It's a word that has the bad connotations right in. And now if you ask people about eugenics, they'll mostly tell you, oh, what we do isn't eugenics because eugenics was that thing that, you know, the state did sterilizing people or sending them to death camps. That was bad, but we don't do any of that yet. I don't know. Wouldn't want to put any limits on what the state's trying to do right now. But generally speaking, that's been true. But it's highly misleading, right? Because the general concept of eugenics, which Bob really, in his very pithy way, put his finger on, my genes are better than your genes, that's gone nowhere. That's still with us, and it's just playing out in different ways. But when a highly placed government official says we don't want people from those stinking countries because they bring their bad genes, their murderer genes, which are things that actually have been said in the last few years, most of us recognize that as negative eugenics, like describing someone as having murderer genes and like we need to get rid of them. This is a ridiculous concept, scientifically, not just ridiculous on the face of it. But they don't recognize embryo selection as necessarily being eugenic. But I love this. Eric Turkheimer uh wrote the other day, Francis Galton was really the first tech bro. It was really the, what did he say? The original tech bro. I think he's that's right on. I think that's right on.
SPEAKER_03:Bob Let me pick up on a couple of things that you were saying there. Uh first off, you're right, uh eugenics was invented in the 19th century, but it didn't really take off as a movement though, until genetics started developing in the early 20th century. So the two went hand in hand. Without genetics, there was no eugenics. Also, I'll push back on something Stephanie said. Eugenics was not considered a pseudoscience. It is in our 21st century perspective, but it was considered the science of its day, the biology of its day, it was applied genetics. And even within the eugenics movement, there are a number of eugenicists who harshly criticized some of the simplistic assumptions of eugenics, you know, that it seafaringness could be inherited. They push back on that quite extensively, but they also consider themselves eugenicists. And the other thing I would add is that eugenics is indeed a global movement, or was a global movement. It was found in just about every country in the world, but it looked quite different in other countries, or could look quite different. And there was not always state laws or country laws passed uh in eugenics countries. For example, New Zealand never had a sterilization law. England never had a sterilization law. As far as I know, France didn't either. So it looks very different where you depending upon where you look.
SPEAKER_04:And I mean, you just have to know that this is not going to be a simple neat thing, right? There is no simple neat so when you ask people about what they're comfortable with, the most typical answer that people give you is I'm comfortable with selecting to make a baby healthier, but not for traits. But every part of that dichotomy dissolves when you look at it more closely.
SPEAKER_01:And that aspect of things, I mean, that's been I mean, that's never gone away, right? Like as far as in genetic counseling and we're talking about selection and positive eugenics and have been for years. And I can remember like 15 years ago, probably Bob, you told me, like, be careful about using the E-word at NSGC conference, you know. I think that negative taint is is real and and really I think does go to more of the negative eugenics, you know, forcible sterilization, eliminating people from society who are deemed to have bad genes. But I think there's something that's switched, I think, in recent years where that we've had some of this like we've seen genetic selection for health, you know, for since the beginning of, you know, the genetic counseling profession as we know it. But, you know, I think things are feeling different now at this moment. So I hope we can talk a little bit more about that. But Stephanie, sorry, I'll let you.
SPEAKER_00:I think that you know, where it looked really different in America to me in the 20th century was that popularization of the Fitter Family Fairs or contests at the state fairs. And really some of the most prominent people in society, between, you know, Henry Ford and, you know, Alexander Graham Bell really advocating for this. And I think that's where I'm seeing some of the parallels in our current environment, where you have these tech bros who hold those similar positions in society advocating for reproductive selection. And then you also have, you know, I think there was a recent article where they were doing garden parties with Norse Dequi. And, you know, kind of again, that idea of popularizing it through how it's presented socially. And I think it is difficult when you use the e-word eugenics, right? It's almost become like Hitler ad hominem. Like there are people who will say it's a logical fallacy whenever you make that comparison. And yet there are people who exhibit some of those characteristics and tendencies. And I see some of that with eugenics too, where it's like, oh, if we use that word, automatically it's discredited when maybe it's more accurate to say eugenic tendencies or something like that. But I still think that, you know, we can it becomes difficult to call it out in a way. So I guess what I'm wondering is what parallels you're seeing now with some of the modern tech-driven pro pronatalism and what we saw in the beginning of the early 20th century is that was being popularized, right?
SPEAKER_03:So let me throw in a little historical perspective there before Lauren goes off on I know what she's gonna say. The uh tech bros uh were pretty prominent in early American 20th century eugenics. Rockefellers, Carnegie's, Harriman's, these were all the ultra-rich people who financed a lot of the eugenics societies and the eugenics record office and and the research, and in fact, also to some extent the founding of the American Society of Human Genetics. Laura, take it away.
SPEAKER_04:Well, it's complicated, right? Because there's sort of two different lines of argument and they're both important. And one is the what you referred to with the pseudoscience, that there's not a scientific basis for it. And that's true also today. So some there is some scientific basis for it. And that there's a lot of a lot of the marketing around the new embryo selection techniques. So let me back up a little bit, right? Because I don't know. Let's talk about what's out there right now. Since 1992, we have been doing pre-implantation testing of embryos. So it's not really, really, really new. The first pre-implantation tests of embryos were to find embryos that were female, so that mothers who were the the mothers of sons with X-link diseases could not pass those conditions along. And so that seems to me, I mean, like a very reasonable thing. Like if a mother came to me and says, My first son has Duchens muscular dystrophy, this is 1992, we don't think he's gonna live more. Like, that's a burden, right? You wouldn't, I wouldn't certainly say, Oh, I think that's just something you need to live with in subsequent children. Like I have no trouble with that family saying, Is there some way you can help me make sure that our subsequent children don't have this health issue? And so they could. It was really actually, I've looked into it. It was a very interesting story. Like they they literally, you couldn't freeze anything then with any rate of success. So they literally could only do a test they could do in like the few hours between when you tested the embryo and and decided what to put back into the prospective mom and the guy handy side who was doing the test. He wasn't actually allowed in the lab in the hospital, so they set him up in a little tent outside. And he would rush down there with the embryos in a little dish and race back. Anyway, very dramatic. So it come a very long way from that, and we've been able to do testing for a long time. But it has been mostly, and I'm gonna put to aside things about PGTA, which is like a whole other podcast. But in terms of looking for specific diseases and conditions, it's mostly been known things in the family, things that the family members are aware of, and they come and they say, we make a choice to not like pass this genes that we're aware of in ourselves down. Now we could get into a discussion of which of those things seemed more like a more worthy reason for using the test than others. But it was a somewhat limited sort of testing platform. Now we have more extensive forms of testing that can be done. And obviously we have embryo freezing and so on, and now there are much more aggressive services being offered for embryo. Genetic testing for purposes of choosing the right embryo. I did air quotes. I know this is a podcast. You can't see them, but I just did that. And okay, so now we're talking about these extensive, sort of anything you can test for, you can test for using in embryos. It's not a perfect, but you can try it. So I think if we went thing by thing, we'd have different comfort levels around each of them. And there's two things that the genetic community gets disturbed about when this subject comes up. And one is simply that a lot of people feel the tests they're using are kind of they're shitty tests. They're shitty tests for this purpose. They're just not very good. Okay. And so they're not really, they're being marketed very hard to a select group of like, oh, this is the way to have safe and healthy babies. This is the, you know, no. No, you cannot create any guarantees about health and wellness or whatever you're trying to do, health or traits, or all the things that you can test for. You're just moving the dial on some of these very slightly. Maybe we're not moving the dial on them at all. Maybe they're they're things that we can't do. This is the same set of complaints we had a hundred years ago, right? Like these tests, the the the science is not what they're promising. And that is, in fact, a problem. When you look at ACMG and other professional organizations have come out against these tests and they're like, they should not be used because they are not a good way of distinguishing between sibling embryos. And that's important as a baseline piece of information. But if me it has a yet attached to it, right? It's like if they're saying they're not good enough to be used, what they're saying is they're not good enough to be used yet. And maybe, maybe they never will be, but certainly some of them will be. And again, some of them maybe should be. Again, like with the Duches, you know, if some person came to you and said, My brother has schizophrenia and my mother has schizophrenia, and I, it has been such a burden in my family. This has been really hard. My life is really hard for this reason. I would like to pick the embryo with the least chance of schizophrenia. Now, by the way, the International Society of Psychiatric Genetics has said that there really isn't a good wit. The test is not good and should not be used at this point in time. But if that test got better, would you object morally to someone using that as their selection criteria? To me, I I wouldn't, you know, but that's a tough thing. But aside from the tests aren't good enough, there's also this whole area of anything that has any genetic component can get tested for here. And there's all sorts of reasons why we really should be stopping at this point and saying, is it all right to test for anything? Is it all fair game? And so when we're saying that, you know, there's some famous, they're famous because they work so hard at being famous, couple that have used this embryo selection for multiple offspring, when they talk about having chosen their daughters for being chill, their word, yes, the simple answer is no, you didn't. That's not something within our scope of being able to test for that your daughters were the chillest of your embryos. But also, what does it mean if you could? Like, is that okay that we're saying that there's uh one type of person who is better than another type of person if you could do this? And also that kind of sneaky thing where it's like, yeah, they were why their daughters? Like, or not your sons? Your sons were not chosen to be chill. Like, what is going on in there? That's like a very kind of feels like an anecdote that has a lot of layers to it. But in general, what's interesting to me is that when I talk to people who are in the IVF world, I talked to someone recently who works as a genetic counselor, works at a number of different IVF clinics. And she said, first of all, what she said to me is that she has people asking for these services, which they do not offer at their clinics, asking about them and being like, we're gonna go elsewhere if we can't have them. And that she explains to them that the science is not validated and they don't care. So that was really interesting to me. She also said it was all the requests came from Seattle and San Francisco and not elsewhere in the country. So this is a very localized and specific thing. But they don't care. So that was really interesting to me. Why do they not care? And I think it's because why does this group of people at this moment in time really want this to be true? Right? Why do they really want it to be true that they can have superior babies using this technology? What is it? Like technology is like the way to make your every aspect of your life better. And a part of it is, if you'll forgive me, a historical ignorance, because they just don't believe that anything from before the internet was really sort of important, or they just cherry-pick like their butt let me get away from the ad hominem. But also it's very interesting. And I have a thought about it, but maybe maybe somebody else wants to chime in first.
SPEAKER_00:I think I see too that there's a real prioritization of academic IQ in that and in the way that they want people who are, you know, functioning that way with intellect, who are functioning, you know, and again, it's largely this white, wealthy mentality, but, you know, I think there's a whole other contingency of people outside of Seattle and San Francisco who might say that emotional intelligence and social intelligence are important. What makes you kind? What's me, what makes you happy? And I think too, how does it impact children when they find out that they were crafted for a particular purpose rather than getting to choose their own destiny and being loved no matter what? And I know that I'm going back to some old-fashioned kind of ideas right now, saying, you know, about unconditional love and the way we see children. But I don't think that there's any parent of an adult child who I know who would say that your children want to be the product of an experiment and do what you've crafted for them. I think that's pretty unpopular among adult children anyway. And so I guess, yeah, like what and that's a question I have too, as far as I feel like they are this group of people is trying to open the Overton window to say that, you know, we want to be able to craft certain kinds of people. And I don't know that the broad general public would support that if they understood that that was the direction it was headed.
SPEAKER_04:Stephanie, they definitely don't. I mean, there isn't broad support for that sort of look, back in Galton's day, he was a part of the British aristocracy. And the British aristocracy had always, and all the other aristocracies had for hundreds and hundreds of years said the reason that they had all the power and that they lived in castles and the is it was it was this way God wanted it. God had put them in this place and God had put someone else down in the dirt, and that was divine right of kings, right? Like there really was no questioning that. And Galton's shared grandfather with Charles Darwin, Erasmus Darwin, was a famous free thinker, which was like some 19th-century euphemism for not believing in in God, or at least not believing in God in that way. And he sort of did fake experiments where he was like, well, if prayer worked, the British royal family would live forever because the everybody prays for them all the time, you know, so it obviously doesn't. But let's say that towards the end of the 19th century, definitely the divine right of kings had lost something in its allure, right? It wasn't a it wasn't a ground for for why they tried. And here was this great justification for why some people had a lot and other people didn't, which wasn't wasn't it was merit-based, right? It was like we are superior by nature. And I don't mean our nature, you know, like by super by genes, really, but they didn't have the word genes. And so it's interesting to me that this is so appealing. And yeah, you can say it's sort of a part of everything. Everybody's tried to get their, you know, people try to get their kids into the same fancy school that they went to or massive, like we all try to not we all, but there's, you know, pass nothing new about trying to pass down privilege to the next generation. But this is beyond what you can pass down. This is a generation of people who suddenly, rather abruptly, have come into money and power at a scale that's really unprecedented, right? I mean, the control they have in this country and in the world. And, you know, I I'm old enough to remember when we're like, oh, investment bankers, it's crazy amount of money they work, it's like a crime. And I'm like, all of a sudden, investment bankers don't look so rich anymore, right? These people are so wealthy at such a scale. And I think no one ever wants to believe that they were lucky or that they were got away with something. I mean, they everyone wants a narrative about themselves, and they want a narrative where it's like, no, no, I deserve this because I'm so special. And I think we are just witnessing a moment where a generation of people is like really wrestling with the idea of like, oh, you know, I'm here because we are so brilliant. We have opened up this technological world that nobody else ever did. And we are doing so much for the world, which I literally have heard someone saying that we need to allow them to produce these super intelligence, and you're right, it's a fetishation of intelligence, super intelligent babies, because those children will be needed to deal with the complications of AI, which is like saying, like, that one group of super intelligent people have created something so massively threatening that we have to breed a new generation of super intelligent people who are theoretically going to rescue us from what their, I don't know, parents did.
unknown:Tom?
SPEAKER_03:So, cutting back for a moment to the idea of selecting embryos, that actually has a much older history. It goes back to sperm donors. And if you look at a sperm donor books from the 1980s, yeah, they list the obvious sort of biological traits like eye color and height, but they list what books did you read, what college did you go to? And you would pick your sperm donor based on really most of those traits rather than uh straight biological traits. So and it's probably there's no more or less effective than using polygenic scores. But we didn't call that stuff eugenics, we just thought it was kind of cute.
SPEAKER_04:Well, yeah, I mean it is, and egg donors too. It it is a really interesting and I think then it's like you could boil it down to height and uh SAT scores, right? A couple of metrics that you could pin down. It's funny, it's funny, but it's not funny because this whole thing is taking great big complicated messy traits that are well beyond the ability of a single metric to describe them accurately, and then narrowing them down to these very simplistic measures like IQ. Because I mean Stephanie's right, right? Like who do you respect? Who do you value? Think about your own lives. Who do you love? You know, are these the tests that you use in the rest of your life? Let me rank my friends by IQ.
SPEAKER_01:Your examples of schizophrenia and Duchenne muscular dystrophy and you know, families that might come to genetic counselors looking for testing for a condition that they have some context to kind of understand. I mean, that is really different than these tests that are being, you know, produced and marketed. And I I know there might not be broad support and maybe to some degree, like people that are taking up these new technologies, it's some kind of status, you know, thing that they can afford to spend a few thousand dollars per embryo to test or or whatnot. But I I see this, you know, in in technologies predating like the whole genome sequencing or polygenic scores. I think that these companies play to like the vulnerabilities of patients, the public, you know, biases and and fears, but also just like this idea that any responsible person would be taking up these technologies, right? This whole idea of genetic responsibility. But I also see the big like financial picture here. Like there's not, I think many people are not gonna have necessarily a lot of I think increasingly these reproductive technologies are becoming the standard of practice, right? And they're all who's contracted with who. I think a lot of people that are taking up embryo testing don't even know what's being tested for. They just wanna do whatever their part is to have a healthy baby because that's what they're being told is the right thing to do. So I don't know. I don't think this is gonna stay like I think these kind of extreme ends of embryo testing are not gonna stay so fringe. That's I guess my fear in it. I wonder if I wonder how you guys see it. But I just, you know, I think like genomic prediction, you know, was contracted with one of these big IVF um conglomerates. And it's just like the highest tier test you can offer to your patients, right? So people are just like, yeah, I'll choose that one off of the menu without even knowing really what they're selecting. And I wonder if the people that are to some degree that are selling these tests know that they're not able to do what they say they are in many cases, but they're gonna make a lot of money. And so why not, you know?
SPEAKER_03:Part of me thinks if these smart people are stupid enough to have the test, you know, that's their own problem. But how many people actually use IVF to have babies? I mean, that's not how humans reproduce. It's only a pretty small portion of the population.
SPEAKER_04:Well, this is what I was about to say, Bob. The the big question here isn't the first big question is, you know, when genomic prediction introduced its technology in 2019, they very much stressed that this was a way for people who already had done IBF and who had more than one embryo and were trying to make a decision about which embryo to use to get a little more information. Why not? And at that point, it is an incremental few thousand dollars per embryo, right? So gotta make a decision. Why not make a decision? And they were somewhat aided, I think, in their case, by the fact that the way we choose embryos is more random than we'd like to admit, right? We look down and then we say we grade them and we score them, and it turns out sometimes we're right, sometimes we're absolutely wrong about the embryos, just using the basis of which ones will stick as a pregnancy. So a few years later, when ORCID launched, three, four years later, they were, and genomic prediction really felt like they would get a public backlash if they were trying to say, like, everyone should do this. This was built, this was like we're a regular IBF lab, and this is an added service. Four years later, ORCID's like, no. Sex is for fun, embryo selection is for reproduction. This is how everyone who can afford it should have babies. There's a lot of should in there, despite the sort of semi sort of nod to autonomy that goes on in this, there's a lot of should. There was a lot of judgment. And if you didn't have your baby like this, and the ubiquitous Norrisidiqui, who is the uh CEO of Orchid, and there is always a quote. So one of my favorite Norisidiqui quotes is she said, and if you don't use it, it's like earned bad luck. Earned bad luck was her phrase for you know, basically, if you don't use this technology, and you could have, well, there's something wrong with your kid, then it's your fault. And I think there'll be a lot of that. So the first dividing line is will people be convinced by this to do IBF, which obviously has its own physical risks, enormous costs, emotional, mental costs as well as financial costs, and some association with increased, you know, health risks for the fetus. So, which they never talk about. But for all that, will they convince people to do IVF just to get to the tests? Because that would open up a bigger marketplace. Then you have questions of, like, okay, well, when you talk to people in IVF today, they're like, you know, all of this stuff, but basically most of our patients are just hoping they can have a healthy embryo to implant that works, right? Because they don't have that many embryos. It's it's a bigger problem in IVF is getting enough embryos than selecting between the ones you have. You know, will we go to gametogenesis or techniques where where we have many, many, many embryos to choose from, which would be kind of a game changer in terms of this technology. And that's the idea, right? That's the idea that all of these companies would sort of be nucleus and orchid and so on. That's the the game plan, is that they're gonna be choosing between not one or two embryos, but dozens of embryos. So I think that as medical people, you know, that schizophrenia example, that is a polygenic score, you know. So I don't think we're gonna be able to, if if you're comfortable with that, I don't think the answer is gonna be able to do we can't use this technique at all, because that doesn't make any sense. It's just a Tool, right? And personally, I think we are just going to get pushed to the point that we're going to have to make a decision as to whether is just everything goes. Is it all like as the sort of philosophers who study this who are sort of pro what they now call liberal eugenics, so to actually use that word, liberal eugenics, which is sort of eugenics biparental choice, and they compare it to, you know, piano lessons and orthodontics. Is it piano lessons and orthodontics or is it performing enhances-enhancing drugs? Are you cheating? And I don't think winning in this case is gonna look like regulating. Because I don't think regulating is on the table for us.
SPEAKER_03:Laura, what was the company that just put all those uh advertisements in Subway next to the signs like Ville del Prainte, Subterraneo Espero Grosso pushing for uh IVF and uh selecting your embryos? I don't know. I don't know, Bob, which one Oh you didn't see yeah, it happened about two weeks ago. There were huge signs in which they had obviously outrageous statements about choosing your embryo by IQ or other things.
SPEAKER_04:And it was pro, it was pro doing this. Then it's probably nucleus. It could be nucleus herasite or what's the other one, sorry. But I think nucleus is the only one that point have the reach. What did you find it? We're waiting. The suspense is killing me.
SPEAKER_00:While Bob's looking at I just wanted to say too though that, and there's my other Pollyanish comment of the day. I I think I really put my trust a lot in the people making the these decisions for their pregnancies and also in journalism, which is a really Pollyanish thing to say, but to help people understand who's behind some of these initiatives and why. Because I know that, you know, we have Elon Musk, who is a proponent of this technology, using this technology, but also in a position to make decisions about things like disability policy, where it is actually giving those consequences that North Sidiquee is talking about, the cuts to Medicaid that largely hurt people with disabilities, the cuts to the Department of Education that largely impacts the Office of Special Education. We're actually seeing this manifest in the policies. And we've seen since Elon Musk bought X tripling in the use of the R word, which I will define for people as the word retarded, which the disability community finds very offensive. And we just had a big incident this weekend where the president used that word as a pejorative. And I think as we see that starting to manifest itself, we also saw a state house member who's a Republican and also the parent of a person with Down syndrome saying, I'm not gonna vote for some of these gerrymandering proposals you're giving because of the way you talked about people with disabilities. And so I guess what I'm my hope is is that in highlighting some of this, even in the deep red south where I live, that there are people who will say this is unacceptable to both demonize people who aren't, you know, the ideal being uh espoused by these companies. And it's also not okay because I love people like that to cut their services. And so I guess in my own way, I'm hoping that by shedding light on it, that it will help people see the fractures that actually do exist.
SPEAKER_04:Well, it is a fracture right through the right, right? It is a fracture through the right. The and that's true in many ways, that the a lot of Silicon Valley money went to support the Republican Party in the last election cycle. And I think I would say, I think many other people say, because they recognized this as a president who was highly transactional and who whatever he said to his base would be willing to do what they asked him for. And the rest of it, you know, I think it's the the Galtonian thing. They're not out to get rid of people like your kid, right? They're not out to get rid of people that they would are, you know. They don't need to. They just need to not make themselves responsible to help them, to create support, to pay for them, to offer services, to be a community, to be in community with people they don't think are important. And important in that world is fetishizing this notion of intelligence. So you saw the Wall Street Journal running an article about it, Silicon Valley is obsessed with IQ. Yes, Silicon Valley is obsessed with IQ right now. That is really what most of this, all of the rest of this comes down to. And all the companies talk about healthy, healthy, healthy, right? But what they're selling to the average person, yes, and they will trade, as Katie said, they will trade on the fears of prospective parents, which are very deep in, you know, like it's I I think there's a whole cottage industry out there from soup to nuts that's scaring pregnant people to death with the fear of like, you know, you could have something could be wrong, and then it would be your fault because you can do this test and you can do that test, and you cannot eat this and you cannot eat that. I mean, there's there's a lot of young women in my life right now who either are or were just pregnant, and I hate the extent to which fear dominates their pregnancies and their pre-pregnancies because they're all being told. Like all these scary things, and it's all your fault, right? Like it's all on you to make sure it doesn't happen. I think all of these things are true at once, but I think there is a really fundamental thing going on where they're messaging that people are their genes, that genes are determinative, that genes say whether or not you're a smart person, and that if you are, you know, in this elite, then you are deserving of all good things. And that, you know, there was an article about Peter Thiel where they asked him about philanthropy. Peter Teal, if you don't know, is uh just Peter Thiel, man who brought you JD Vance, your current vice president, right? Peter Thiel is a very, very wealthy Silicon Valley, uh beyond very wealthy Silicon Valley investor and entrepreneur, and who was sort of openly anti-democratic and has has he's had a lot to say. But one of the really thing, interesting things that he had to say was when he's they said, like, well, you know, would you consider giving money away? And he said, like, well, I think philanthropy is for people, I'm paraphrasing, who, you know, feel they've done something wrong. Like, why would I have to give back if I didn't do anything wrong? As if, as it was an admission of some sort of guilt. Like he doesn't deserve all that he has if he does something for somebody else. I think we're losing the messaging wars on a lot of this. I understand what you're saying, Stephanie, that there are messages that we could win on here, but I don't think we're winning on them right now.
SPEAKER_03:So speaking of messages, it was Nucleus Genomics who had the subway signs. And uh, their campaign was have your best baby. And their sign said things like, These babies have great genes, taking that from Sydney Sweeney, I think. And height is 80% genetic. For you can get 20 embryos screened during IVF for nine, well,$8,999. So like a week's pay for most of America. But that was all over several subway stations in New York City a few weeks ago.
SPEAKER_04:Plus IVF. That's once you've already done the IVF. Just so anybody's listening doesn't think you this isn't an$8,000 test. This is a$30 something thousand dollar test because first of all, you have to do all the IVF.
SPEAKER_03:And assuming the IBS is successful the first time and so on.
SPEAKER_04:Yes, and then insurance is not going to pay for your IVF, particularly if you're actually not infertile at all.
SPEAKER_01:And so true that it will be a pretty narrow group of people that are even exposed to the possibility of these technologies, but also true that the conversation is shaping the way people are thinking about genetics and how it shapes who we are and what we deserve and what lives are worth supporting.
SPEAKER_04:So I think we've talked over historically, we've talked a lot about the difference between traits and diseases, and you know, that has not been very successful. You know, there's a lot of people that have traits that have diseases and conditions that have very good lives, for one thing. That's not necessarily a dividing line that actually works in reality. You'd have to go to talk to people with various traits and conditions and say, how do you feel about this and how it's influenced your life? And it's just also a very, very hard line to draw. I wonder, this is just something I've been thinking. It might be more successful messaging way that people can understand when you're talking about the difference, is the difference between selecting for less risk. Less risk. Now, again, I realize that's not gonna solve all the world's problems because there's a lot of in that sits in that. But in other words, if you're worried about having a child with a really high risk of heart disease, because you have a family history of heart disease, and you say, Can you do the test? You do a test. And basically what they're gonna look at is sort of say, you know, you have a lot of genes that look very much like what most people in the population have that don't have higher risk, right? When you're talking about, I want the tallest kid, or I want the most athletic kid, or I want the most intelligent kid, which is really what you're gonna hear about, I think, from people, you're really looking for outliers. And I don't think that that's been discussed enough that the idea of testing for outlier genetics is actually a really sort of fundamentally risky and uncomfortable notion. We, by definition, don't really know what we're testing for there, because it's outliers, right? Like I think that's something people could understand. That, you know, it's one thing to do a check and to make sure that somebody doesn't have a gene that is unusual and associated with, you know, this illness or that illness. And quite another to see if we can cobble together an embryo with a collection of genes that is associated with sort of stratospheric and unusual intelligence because genes play out in context. Whatever tests we have, which are not good enough for it, we know they're not good enough. They only look at a very small amount of the variance in the population. But even that variance in the population takes place in a certain context, and in another context would play out differently. Like we're really just like into completely unknown territory where the outcome is shaped by not just what you're looking at in the test and not just environment, but other genes and environment and moment in time. It's not possible to do this. And if it were possible, is it even a good idea? Is that what you want in human beings? Like, is that what we want in a community? And I think what we're gonna have to face the really hard issue, which is that we've always said we defer to autonomy and it sort of protects us morally, right? We're letting people make their own choices. And at some point, I think we might be faced with the choice of the need to sort of say, what's good for us as a society? What's good for us as a community?
SPEAKER_01:And is it this? Well, and what information do are people making these autonomous decisions based on, right? And who decides what information goes into helping inform those autonomous decisions?
SPEAKER_02:That too. Yeah.
SPEAKER_03:Some of this is also culturally bound. For example, the in the United Arab Emirates, as of this year, if you want to get married there, you have to undergo an expanded carrier screen. Like over 500 conditions. And that hasn't been met with resistance. As far as I can see from what I've read, it's been met with wide acceptance in the genetics and the popular and the pop general populace of genetics community and the popular community as well. So what we think is right for us, or wrong for us, doesn't necessarily apply in other parts of the world, which is a whole other set of problems.
SPEAKER_04:Well, it's a different part of the world, right? They have a lot of recessive disease from you know, a lot of in-kinship groups.
SPEAKER_03:Ninety percent of the population is not from the United Arab Emirates.
SPEAKER_04:But as I yeah, it is. I mean it wouldn't fly here, right? That wouldn't fly here. But it doesn't say you can't get married based on what's in the test, right?
SPEAKER_03:No, but you want to get married, you have to have those test results shown. So yes, one could get married, but one presumes there's gonna be a lot of on the first date. No, before I get your phone number and email, let's just look at each other's genetic screen here. Not a great opening line, I grant you, if you want to pick somebody up.
SPEAKER_04:Yeah. Anytime the state gets involved with genetic testing, I just think you could make it like a sort of a a rule there. Like it's bound to add end badly. Whether it's the US testing at the border to make sure that families are families by DNA, that there's or China testing individuals against their will. Like, but there's no state-mandated form of genetic testing that I'm comfortable with.
SPEAKER_01:Can I ask, what do you both see as the role of genetic counselors in kind of evaluating these new reproductive technologies and thinking about the way that we're talking to patients or talking to the public about them? I mean, obviously, like some of our peers are working for companies like Orchid now. And I just wonder like how, yeah. I'll say my my one of my appreciations up front is that I think both Laura and Bob, I appreciate so much how you keep these conversations and always have since I've been a genetic counselor, you know, in the forefront. And I think you have some good insight into how we should be thinking about this. I was struck at the NSJC conference about, you know, so many new genetic counselors going to some of the industry-sponsored talks and just kind of absorbing what was being, you know, presented. And I wonder if you have advice for the genetic counseling community how we might evaluate these new technologies and what our role should be and how we communicate about them to patients and the public.
SPEAKER_03:You going first, Laura.
SPEAKER_04:Okay. Well, there's different roles that people are played. Um, I mean, gatekeepers is a loaded word, but we will literally gatekeep this. So genetic counselors are involved. They're only genetic counselors working in a minority of IVF clinics, but the IVF clinics will in fact be the ones to offer or not offer some the embryo selection technologies, or which embryo selection technologies is probably a more accurate way to put it. And the question mark here is will they, when somebody comes, so I don't think very many of them are enthusiastic about some of these polygenic scores because they are aware that they're weak predictors, even if they think it was an okay idea if it works, they know it's not a very good test for sibling embryos. But the first set of questions is when people show up, and they will, and they already are, and say, we want this, we will go elsewhere if we can't get it here. What are they going to do? Because unlike other parts of medicine where, you know, if you say, okay, this test is not paid for because there's no proof that it works, or this treatment isn't paid for because the FDA didn't approve it, people are have to pay out of pocket if they want it. That's a big disincentive. Like it sort of essentially doesn't catch on in most areas of medicine, with some few exceptions. That's not how IVF works, right? So IVF people are coming in and they're paying for this stuff out of pocket anyway, largely. So the question is, will they, how hard will they push back when people say, which is why it's being advertised in subways, why it's being advertised as if it were a direct-to-consumer test when it is the least possible direct-to-consumer test. Nobody can cheek swab an embryo, right? Like they cannot get in there and test the embryo without the clinic being involved. I think it's going to be, you know, there was a period of time where a lot of clinics were like, we won't check for sex. And then people wanted it. So they did. They're a consumer-sensitive industry. And I think it's going to be a hard sell. But I think it is really important that there are genetic counselors in there who are the people in that setting who are willing to sit down with somebody and say, here is what this means and here it doesn't mean, and really talk it out to them. So it isn't, as you described, Katie, it isn't that it's just they don't even know what they're being tested for, but they're being sold a test and told this is the top-of-the-line test. And only when the test comes back do they understand what's being sold. So I think it's important that they're in there, but I think it's an easily overwhelmed situation by consumer choice. And I think it's important that we number one talk about this publicly. Like I said, I think we're being beat on the messaging. I think we need much better messaging about what's wrong with some of And something I feel like I'm working on every day. Like, what is how do you explain to people in ways that isn't like abstruse and uncomfortable and like historical and so on? Like, what is wrong with all this? And I think one of them is we recognize on a gut level what's wrong with negative eugenics. We recognize on a gut level there's a sense of like, oh, there's pushback, even to Stephanie mentioned President Trump using the word retarded this weekend to describe somebody. There is pushback. I think it's great that he had a political loss that you described. I thought that was great that it like there was an actual consequence right off the bat. But there is at least a gut-level recognition that this is dangerous territory and that it's loaded and that there's consequences. I don't think we have that same response to what I'm calling positive eugenics, this idea that we could select for better people. I think when the press writes an article where the lead line is this is from the San Francisco examiner earlier this year, like I met the man showing him and say, Look at my super baby, is in paragraph one. I think there ought to be, we ought to get to a place where that's an uncomfortable thing for somebody to say in public. And I think that genetic counselors can help there.
SPEAKER_03:Yes. I'm not singling out genetics to work in industry. They're struggling with the same issues that we are, and they have the same level of ethical concerns. I will say, I will fault the profession as a whole for pushing genetic testing of all sorts. That in fact, you'll hear genetic counselors say in their brief bios, I'm passionate about bringing genetic to everybody. Well, personally, I don't think everybody should have genetic, at least not if they don't want it. Yes, everybody should have access to genetic testing. Everybody agrees with that, but not everybody wants genetic testing. Not everybody has the financial means for genetic testing. And more importantly, I'm not talking genetic in general, not everybody has the access to do the follow-up that you need to do for genetic testing. If you're identified as having a BRCA mutation, you're talking an incredibly expensive and time-consuming follow-up, twice a year. And if you have Lynch syndrome, you join the annual colonoscopy for life club, among other things. People just can't do this kind of stuff. There are very good reasons, or reasons that we don't think are good, but the people think are perfectly good for not having genetic testing. So I think we need to modulate our message and say you should all have access to genetic testing, and everybody should have access to all the follow-up that we need, that they need.
SPEAKER_04:And one more thing which hasn't come up through this whole long conversation, which is genetic determinism. So what all of it rests on, both positive eugenics and negative eugenics, is the idea that genes determine who we are. And as a profession, we are as guilty as anybody else in perpetuating that notion that we shorthand it. We talk about gene like we do it in our press releases, we do it in the titles of our papers, we do it in our conversations uh with people. We have to stop it. We have to stop that. We have to police ourselves really, really well. We know as a field that when it comes, that very few things are in a simple and straightforward way genetically determined. In other words, laid out in a blueprint in your genes and nothing else matters. Very few, and very few things of importance are.
SPEAKER_03:Not zero, so that's complicated, but very few. I think some people have the gene for genet determinism.
SPEAKER_00:And I feel like Laura, like I live that every day, right, with Andy, my son with Down syndrome, because on paper, you know, he does have a moderate intellectual disability, what would be considered a low IQ. And at the same time, he is a talented photographer. He was motivated enough to get a job at 16. He is witty like Bob, and he has all kinds of traits that wouldn't be picked up on paper in a karyotype, because they're outcomes of the joy de living. And it's not necessarily, I don't know how much of that is even determined by genetics, right? So I think that's a really insightful statement. And I I just want to thank you both for spending the time to talk to us today and for sharing all of your insights and all the advocacy that you do all the time for genetic counseling and genetics and for human beings in general. We're very grateful for both of you. And uh just as our kind of closing up with our advocacy call to action, we have created an alliance for disability justice and ethics in reproductive genetics, which is a mouthful. So obviously, we need to come up with some kind of acronym, which we have not yet. But our objective is to inform disability advocacy organizations about these technologies because most of them are largely living outside that bubble and help them to understand what's being promoted by tech elite so they can prioritize these issues and their advocacy initiatives and act with a cohesive strategy. And just as a shout out of gratitude, obviously we're so grateful to both of you and for all that you do for us with GC's Got Talent and with the world in general and letter case review committee and everything, and also very grateful to the disability advocacy organizations who have been speaking out about some of these cuts to services over the past. I mean, they do it all the time, really. It's been especially the past two years, but it happens all the time. We had just in this past week with what happened with the use of the R-word, you know, National Down Synome Congress, National Down Saturn Society, Jack's Baskets, local organizations, all speaking out about that. And our priority ultimately being the tribe that loves us rather than the tribe that wants to use us for their gain. And so all it Katie, take it away with her shout-outs and gratitudes and also the outro.
SPEAKER_01:Oh, my shout-out and gratitude is to Bob and Laura for joining us today and for all of the wisdom and mentorship you share with me and with so many others in the genetic counseling field all the time. So thank you guys so much for being here and for speaking on our podcast. Please uh share this. If you listen to it and like it, send us your comments and we'll talk again soon.
SPEAKER_00:Also, if they listen to it, they will like it. That's podcast determinism. Oh, thanks for having us.
SPEAKER_04:Thank you. Thank you.
