Genetic Frontiers
A podcast about the promise, power, and perils of genetic information (geneticfrontiers.org)
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Privacy, Discrimination & Your Genetic Data
06/25/2026
Privacy, Discrimination & Your Genetic Data
Susanna Smith On today's episode, I will be talking with legal scholar Anya Prince, who is a professor at the University of Iowa College of Law. Anya's writing and research focuses on health and genetic privacy, particularly the potential for genetic discrimination and the privacy implications of big data and genomic and genetic clinical care and research. I became really interested in Anya's work because she's published extensively about GINA, the Genetic Information Non-Discrimination Act, writing analysis about what legal protections exist for genetic information in the United States and examining through survey work what healthcare professionals, insurance commissioners, and the public do—and don't—understand about healthcare privacy and the potential for genetic discrimination. I'm interested in how we protect people's genetic information because as a provider of genetic disease, I personally could stand to lose a lot if protections are insufficient. I also take the view that people, all people, should be able to exercise privacy and control over how their healthcare In my view, we don't have enough protections in place yet, and we're not well prepared for a future or even the present moment in which genetic information is increasingly driving healthcare decisions and operates as a valuable form of data currency. So thank you for joining me today on Genetic Frontiers, Professor Prince. Anya Prince Thanks for having me. Susanna Smith I want to start by talking a bit about the big picture. How is privacy viewed or valued in American culture, the legal system, and in healthcare? Anya Prince Yeah, so I think, you know, so many people say, oh, privacy is dead. We don't have privacy anymore. But when you actually start talking to individuals about privacy, they really value it in lots of different ways. But I think one of the big problems is there's a disconnect between how the public thinks that privacy is viewed or valued and how the legal system actually values it. So overall, and we'll talk about the details, I'm sure, today, but the law is not very good at protecting health privacy. And so most notably, the law treats the privacy of health data and genetic data differently depending on if it's within clinical care, within a research setting, or within a commercial space. And so it's really hard for the public to see whether or not the protections match the values that they have for the privacy of their health information. Susanna Smith How would you describe Americans' relationship to privacy? Anya Prince I think that they value it. I also think that people are happy to share information, especially if they know how it might be used, or if they trust who they're sharing with. So on the one hand, you know, people use social media and post all sorts of things that could tell them about, you know, tell others publicly about their health information and so there's lots of ways where we're not as private about our health information as one might think. But there's also data that when you tell people that they might be part of a biobank, or you tell people that their genetic information has been commercialized. They're actually surprised about that and uncomfortable with that. And so I think we have a little bit of a both-and, right? In some ways people don't think about privacy on a regular basis. They just go through the world and social media and the internet without necessarily having that in the forefront. But when you start to ask people how they want their information to be used, I think we start to see more of those values coming in. Susanna Smith Yeah, and I think trust is a big part of it, right? Like, how private you want to keep information is often about how you trust whether it's going to be used in a way that might harm you. So how do you think about the importance of privacy and or data security when it comes to healthcare data versus genetic data specifically? Anya Prince So I think, so some argue that thinking about the privacy of genetic information or health information without thinking about just general privacy at large is exceptionalism that we should not think about health privacy or genetic privacy as anything different than just how do we protect data at large? Some people argue that, but I think it makes sense to think about the privacy of health data and the privacy of genetic data as more important or something that should be given extra consideration, both in the law and both by the public. Part of that is that your genomic data, your health data is incredibly valuable so there's, you know, most of the cybersecurity attacks and threats to data privacy come to hospitals and places that hold our health information because it's just valuable on the dark web. But it's also valuable for advertisers, right? If they know that you might have a predisposition to diabetes, they might try to sell you insulin pumps or healthier foods or whatever that is. And that could be really beneficial to a person, but it still means that somebody is leveraging your health data in certain ways. And for better or worse, I think people think about their healthcare and especially their genetic data or their genomic data as different than just general data, you know, especially genomic data. It's who we are. It's our blueprint. It ties us to our family members. And so I think people do think about the sharing of their genetic information in a much different way than other health data and other general data, and so therefore, I think about the importance of privacy and data security in that space as heightened since people tend to value the privacy of that information a little more. I also think, and this might complicate the picture a bit, but some of my other research is in how much we can infer private health information from other information. So let's say we say, Okay, I have a predisposition to colon cancer, and so I don't want my genetic information that that shows that predisposition to be sent around. Okay, well, that's really important to protect that privacy. But if I joined a Facebook group for the Lynch syndrome community or I did a bunch of Google searches or online searches for cancer predispositions, those things could also proxy for that information. So while I do think it's really important to keep genetic information more private, because like you said, you can't change it I also think it's really important for us to think about how much we need broad data protection to because of the ways that we interact with the world based on what we know about our health information. Susanna Smith Yeah, I think that's such a valuable point because we kind of, and even I do this sort of narrow in on certain data points as these are things I want to keep private, but I operate in a world, right? So I'm creating data all around me by my behaviors that is collectible, people can analyze it. Anya Prince I was just going to say, it might not be perfect, right? They might get it wrong like you know as a health privacy researcher who does not have a medical background, I search all sorts of diseases on Google, right, to try to just learn about the communities and the predispositions that I'm studying. And so an advertiser might think that I've ended up with 100 different conditions but there could be ways that they could identify it correctly. Susanna Smith Yeah. So, you opened with saying, some people say privacy is dead. It sounds like you don't totally believe that. I don't totally believe that, but what does privacy mean in a world where your genetic data, possibly your full genome, could be collected from your toothbrush and your genetic data can implicate others, namely people you're biologically related to. Anya Prince Yeah, so these examples do show ways in which it's really hard to completely insulate ourselves from intrusion upon our confidential information. But I agree with you that privacy still matters. There are some state laws that or some states have laws that are against what's called surreptitious testing so that collecting something from your toothbrush and sending it in for a testing lab. There are laws that help protect against that. But also, I think each time that anybody is able to successfully minimize the amount of data available about them, it minimizes their likelihood of harm. So even if it never completely ameliorates the harm that could come, I think privacy matters because it gives us some control and the ability to lower our risk of future harm that might come if somebody knows our information And it also just as you started off the podcast saying, I think it matters to give as much control as possible to somebody to say, this is how I want my data used. I think it's respectful. I think it it's just something that everybody should have as much as possible, even if it's harder and harder to gain in this complex world. Susanna Smith Yeah, I mean, my opinion and my view of it is that we're also only slowly creating those systems of control, right? That we started out decades ago collecting this data and then sort of in some ways backed into this idea of, oh, well, we should figure out some ways that you can control how your data is used. So it feels like there's a catch up that's happening societally of awareness of what data can tell us about a person and how that data might be used. And I'm talking even more broadly than healthcare and genetic data, but including that. Anya Prince Yeah, I think that's a really important point. Susanna Smith So you published this brief but really rich article with a co-author in JAMA called “Protecting Privacy When Genetic Databases Are Commercialized.” In that article, you write that many people are unaware that their health or genetic data may be commercialized, whether it was collected when they were a patient, a research subject, or through some kind of direct to consumer testing. And then when people realize this, they're often uncomfortable. But this is long been the model, particularly for direct-to-consumer genetic testing companies. So how do you view this disconnect between what people think about the privacy that they have over their health and genetic data and how private their data actually is? Anya Prince Yeah, so I think this is really a confluence of three problems. So that's going to be a little bit longer of an explanation, but I want to walk through each of those problems because I think it goes to what you were saying of people playing catch up. So one, we have a system in this country where privacy rights, for the most part, especially outside of clinical care and outside of the research setting, is given through what we call notice and consent so those are if you download an app on your phone, they give you your privacy policy, and you say, yeah, yeah, yeah, of course I've read this and you click on it. And basically nobody actually reads those all, right? But that's notice and consent. We've given somebody notice of how their data is going to be used, and they consented to it, and then it's fair game. And that's such a problem because we know that people don't understand fully how their information can be shared, and yet we still have that as the legal basis for a lot of respecting privacy in this country. The second problem we have is that we've built a data economy. So there's the saying of, “If the product is free, you are not the customer, you are the product, right?” And so there's so much of that in our society now because companies are allowed to share people's data and sell people's data. Again, this is outside of the health care, healthcare and research setting space. But for the most part, we have companies that have built their business model over treating people's data as a monetary value. And then the third problem, I think, is that the law treats de-identified information differently than identifiable information. And here now I am talking about the research context and the healthcare context and the commercial context. And so there's a lot of sharing of our de-identified information that does not need people's consent, and that happens wildly. And on the one hand, that's great, because a lot of our research has happened because we can now study 1,000,000 people's genomes at once. The researcher doesn't know that it's Anya or Susanna's genomes, but it's, you know sample 1, 2, 3, 4, 5, and 1, 2, 3, 4, 6. But when it comes to genetic data, it's hard to completely de-identify it because it's unique to everybody. And I think people still might care about how their information is used to, you know, in ways, even if their name's not attached to it. So when you put all of those three systems in place, it really creates this disconnect where people might think that their health and genetic data is more protected. And in reality, they've often given away their rights of how their data is used. And then there's this monetary incentive for companies to run wild with it. Susanna Smith Yeah, I want to pause on two things you said there. One is this idea of what health data is collected when it's collected inside a healthcare system and possibly some of the same information could be collected direct to consumer and legally, how is that different? How is that treated differently? If I do it through a company versus I do it through a clinician and a hospital system? And then I just want to ask, what is your real opinion of “de-identified”—and I'm doing air quotes here—genetic data. Anya Prince Yeah, so the first one, so in the healthcare setting and health insurance setting, I should say, the health insurance portability and Accountability Act, or HIPAA, applies. So HIPAA has a privacy rule that really starts with the baseline of health information should not be shared unless and then there's some exceptions. And so if you go and get genetic testing with a genetic counselor in a clinic, then your information is protected in a much different way. But one of the exceptions of HIPAA is that if it's de-identified then the hospital or insurer doesn't need consent to further share it. But that has so much more protections than in the commercial space. So if you do direct to consumer genetic testing, HIPAA does not apply to those type of companies. And so really at the federal level, the only thing that applies in terms of privacy, is that whatever they say in their privacy policy, they have to follow, otherwise it's an unfair business practice. And so theoretically, I don't know of any companies that do this, but theoretically, the privacy policy could say, we are going to put your entire genome on the web for everybody to read, and you consent to that. Is that okay? And then if you click I agree, that's fine, right? So theoretically, they can say we could sell this for millions of dollars. You know, they could agree to sort of anything, or they could say that they're going to do anything. And as long as you click, I agree, right, and they abide by those terms of the privacy agreement that you agreed to it’s really the Wild West at the federal level. Now, at the state level, some states are increasingly passing laws that give more protections to individuals. But that's the dichotomy in terms of healthcare and outside direct to consumer testing. In terms of what I think about de-identified there have been plenty of studies that show that that genetic sequences, raw genetic sequences, that have had people's names removed can be re-identified. And so just removing somebody's name is not enough to completely expel the risk. De-identifying genetic information lowers the risk. So would a pharmaceutical company that has a large database of hundreds of thousands of genetic sequences really go back and find one particular persons and re-identify particular persons. No, I think that's relatively low risk. But it is interesting that we've created laws that treat these information differently, whether it's identifiable or de-identifiable without really grappling about what that means in the context of genetic information Susanna Smith Yeah, and I think I want to pause on this point because I think the reality is the science has changed, right? And so the laws were formulated around this idea that that if you strip personal information out of it, we're protecting people's privacy. And then the science advanced to the point where we can go back and do the work to identify. And so I think it's just this place, and it exists in other places, where the current legal protections don't reflect our current scientific understanding of what we know about DNA. Anya Prince Yeah, and I think this to not make this exceptional about DNA, I think this is a problem for all data, right? There have been studies, there's a , her last name's Sweeney, and that you can identify individual people with it’s something like age, zip code, and gender, right? You can identify like almost everybody, I don't know, it's upwards 80, 90% in the study of people in the US, just based on those 3 things alone, right? Because if you think about it, how many people in one zip code have the exact same birth date? You really start to narrow very quickly, and so then, if you think about all the data crumbs we're leaving everywhere, it becomes pretty easy pretty quickly to put together different data points about people. So I think this is something that the law and society will have to grapple with, not just in genetics, but in just big data and algorithms in general. Susanna Smith Yeah, I totally agree with you. And I don't want to go down the entire dystopian path of like the reality we're living in currently of how that data could be used, but I think it's a great point. We're really lacking in both data privacy protections and data security protections, but I would also say public education around what people understand about what data is being collected on them regularly, and the current uses and the potential uses. Anya Prince Yeah, and I think that that current use versus potential is so important to you, right? I came back to… I still think it makes sense. I mean, I still think it's a good thing that when people share information, they de-identify it, right? If a direct-to-consumer company is sharing with a pharmaceutical company, great to de-identify, because that lowers the privacy risks. So again, I go back to, sure, we could go down the dystopic path and have all sorts of scary scenarios, but in reality, right now the motivations to re-identify large data set, I don't know, what would they actually be? So is it theoretically possible? Sure. But does it minimize the risk? And really, you know a pressing risk at this moment? No, I think there's other pressing risks in terms of privacy that we might want to tackle first. Susanna Smith What would you see those as being? What do you think are the most pressing risks in the privacy world around healthcare and genetic data? Anya Prince So one is the disconnect, right? I think we should make sure that and by that I mean the disconnect between how people think their health privacy is protected broadly and how it actually is. And so I think one of the largest ones is the fact that outside the healthcare setting health information, the exact same health information, is protected in a different way. And so that's that's one that I think would be important to do. This is outside the privacy space but I think another piece is how the information is used, right? So another part of my research is discrimination, and I think privacy and...
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Sex Testing in Sports: Bias & the Science of Genetic Variation
04/21/2026
Sex Testing in Sports: Bias & the Science of Genetic Variation
A conversation with Shoumita Dasgupta, PhD, a geneticist, anti-racism educator, and the author of about transgender athletes in women’s sports, the science of human genetic variation, and the relationship between our genetics and our sex, gender, race, and identity. EPISODE TRANSCRIPT Susanna Smith Hi everyone. This is Genetic Frontiers. A podcast about the promise, power and perils of genetic information find us wherever podcasts are found and go to to join the conversation about how genetic discoveries are propelling new personalized medical treatments, but also posing ethical dilemmas and emotional quandaries. I'm your host, Susanna Smith. On today's episode, I will be talking with Dr. Shoumita Dasgupta, PhD, who is a Professor of Medicine and Assistant Dean for Diversity and Inclusion at Boston University. Professor Dasgupta is a geneticist by training, and she is an internationally recognized anti-racism educator and the author of a new book, In this book, Professor Dasgupta tackles a number of really big subjects, including the relationships we derive between our DNA and aspects of our identity, such as our race or ethnicity, our sex, gender, or sexual orientation and our understandings of genetic difference and disability. She digs into what is actually known about the inner workings of our bodies and our genetics versus the stories we, as humans, have created to make meaning of our DNA for ourselves. Many of the stories we tell ourselves are detached from the realities of what scientists have learned about human biology. Often these stories are laced with bias and grounded consciously or subconsciously in the idea that human beings can be categorized, organized, understood, and assigned value based on aspects of our biology. It's an overly simplistic idea, but it's foundational to how the United States was built, and how this country and many others continue to operate. What scientists have found over the last century is that human biology exists on a wide spectrum of diversity, plurality, and complexity that we are only now beginning to understand. Human beings aren't easily categorized or understood through their DNA. What Professor Dasgupta offers in Where Biology Ends and Bias Begins is a guide and a challenge to everyone who wants to dig into how our understanding—and misunderstandings—about human genetics shape how we see ourselves and other people. Thank you, Professor Dasgupta, for joining me today on Genetic Frontiers. Shoumita Dasgupta Thank you so much, Susanna. It's my pleasure to be here with you today. Susanna Smith So I want to start with a topic that is very much in the news and the political crossfire today, and has been a hot-button topic in the United States for a long time, which is transgender athletes in women's sports. In your book, you give a bit of history about how, before genetic testing, women athletes were made to parade themselves, their bodies were certain of their femaleness by viewing, and then only after were they allowed to compete in women's sports. Then in the early to mid-1980s, various forms of chromosomal analysis started to be used in athletics, and in some cases turned out unexpected results. And in the book, you write about a particular athlete, Maria José Martínez Patiño, who was the Spanish national champion in hurdles in the 1980s, and went on to compete internationally. Could you share a bit of Maria's story with our listeners? Shoumita Dasgupta Absolutely, I'd be delighted to. Maria José Martínez Patiño was a track and field athlete. And when she was competing, there were a variety of different sex-based tests that they did to determine eligibility of athletes. And so, in this testing, there was really a major conflation between sex and gender, so it's somewhat helpful to understand the difference between the two. Sex has to do with the biology of one's body. You know, what's in your DNA? What organs do you have? What sex hormones are circulating through your system? And it turns out that sex is typically assigned at birth, based entirely on external anatomy. So, this particular way of determining sex just really doesn't kind of capture the overall complexity of the spectrum of sex, and the fact that sex is not binary, it's not simply male or female, but there are many, many intersex people on the planet as well. Then there's gender. And gender has to do more with, you know, who you identify with in your heart and in your mind. Do you feel like a boy, a girl, a man, a woman, a mix, or none of the above? That has to do with what gender is. And sexual orientation is an entirely different category, which has to do with who you are attracted to and who you love. Now, in sport, there's a real fixation on binary categorization. The competitive categories tend to be men's sport and women's sport, which are gender designations, but the idea behind it is that there may be biological advantage to having been exposed to certain sex hormones, for instance, during development. So that's really to do with sex, not gender. When Maria José Martínez Patiño was competing, she had to go through these sex tests, many of which were focused on her chromosomal makeup. So what tends to typically happen is that males typically have XY chromosomes, and females typically have XX chromosomes. When she was first competing, she passed these tests and was given a certificate of femininity, as it was called at the time. But then when she went on to compete in a subsequent competition, she didn't have her certificate with her, so she had to go through a retest. The retest indicated that she did not have two X chromosomes, which is what the previous test had said. So her test had to be repeated. And this was, you know, kind of humiliating, or at least it called a lot of attention to her, and so she faked an injury to just kind of be out of the limelight while all of this was happening. Once the results came back, it actually showed that she had XY chromosomes, which are more typically associated with male development. If we dig deeper, though, what we found in the case of her own health was that she had androgen insensitivity syndrome. What that refers to is testosterone, which is an androgen, requires different kinds of biological components to elicit a response in human development. She didn't have those components, so she was not responsive to any testosterone in her system, even though she had XY sex chromosomes. Because she was unresponsive to testosterone, her body developed in the typical female fashion. She developed breasts and a vagina, and she identified as a woman in terms of her gender. Probably, if you really think about it, she was likely at a disadvantage compared to other women in her competitive category, and that's because testosterone is present in females and males. So typical females will have the ability to respond to testosterone, whereas she did not. So you could say that she was at a disadvantage. Nevertheless, because she didn't pass this repeat testing, it turns out that she was disqualified from further participation. That disqualification led to her losing her scholarship, her housing in the athletes' residences, her fiancé, her life just was completely blown up. And she, you know, to her credit, really took this as a call to action to work on behalf of other athletes who have different sorts of intersex characteristics and to really to fight and advocate for people to be able to compete in sport, regardless of, you know, kind of not fitting into the typical categorizations. Susanna Smith So, I want to back up to something I understood from the book, which was that Maria didn't have any questions about her sex or her gender when she walked into these competitions. And also just to clarify for our listeners, the testing Maria underwent to receive this certificate of femininity was applied to all female athletes, it wasn't because she was different. This was every female athlete underwent this testing. So could you just clarify that point? But also what did Maria know when she walked into these competitions? Shoumita Dasgupta That's a great question and a really important point. It's notable that they engaged in this sort of sex testing or gender testing, depending on their framing, only for women athletes. There's no similar process in place for men athletes. So this was already, you know, kind of a process that has misogyny baked into it. As you said, she didn't have any suspicion or reason to believe that she was anything other than a typical cisgender woman. These tests often will unearth facts about people's identity that they themselves were unaware of. When I said that sex is often assigned at birth. That really means that a lot of differences or variations in sex development are not actually identified until later on. Sometimes that can happen at puberty. Sometimes that can happen in the context of sport testing. Sometimes that can happen when people are trying to have children. So in Maria's case, you're right, she didn't know at all that this result was potentially in the cards. Susanna Smith Yeah, and I think one important point to point out is sometimes that could never be identified, right? Like in Maria's case, it was identified because she was this elite athlete who had to undergo this testing or that's what the sport required. But there's a possibility you could walk through your entire life and not be aware that your chromosomes don't align with your sex identity or your gender. Shoumita Dasgupta That's absolutely true. Another thing that is maybe worth thinking about is how common these intersex identities actually are in the population. Some estimates I've read place this at about 1.7% of the population, which is roughly the same as the percent of people who are redheads. And we all know redheads, which means we all know intersex people as well. Susanna SmithSo for someone who is not a geneticist like you are, or who doesn't necessarily have a science background, could you give us some examples of different forms of non-binary sex? The different ways that can exist like chromosomal and hormonal, and you kind of go through some of that in the book. Shoumita Dasgupta Sure, absolutely. I like to try to think about three main aspects of sex. Chromosomal sex, to do with the presence or absence of X and Y chromosomes, then there's gonadal sex, which is, you know, the reproductive organs that also produce the sex hormones, the sex hormones then drive development of the body. And the body can include secondary sex characteristics that are visible externally. And that would be, like, development of breasts, vagina, penis, other kinds of anatomy along those lines. So when it comes to intersex identities, what you see is that the typical flow from, for instance, XX chromosomes to ovaries to estrogen to breasts and uterus and vagina, it doesn't happen in that kind of regimented pathway. As we talked about as well with Maria José Martínez Patiño, in her case she had XY chromosomes, which tend to be aligned with testes that develop testosterone, and then the body responds to presence of testosterone in developing a penis, for instance. And in her case, even though she had XY sex chromosomes and was able to produce testosterone from her testes, you were not able, or her body was not able to actually respond to the presence of that testosterone. So her anatomical development was somewhat more aligned with female development. And what happens with intersex folks is that you have some aspects of female development, and some aspects of male development, and sometimes things are somewhat in between. You can't really ascribe either male or female developmental attributes to either. So you might see, for instance, the presence of intermediate gonads, and that's one of the characteristics that contributes to people being identified when they're trying to have children. So if they have intermediate gonads, they might not be able to produce sex cells. They might not be able to produce sperm or eggs. So this is one point in time when people who are intersex do get identified. Susanna Smith Can you clarify what are intermediate gonads? Shoumita Dasgupta Intermediate gonads are not quite ovaries and not quite testes, so they don't produce the typical sex cells of ova and sperm. Susanna Smith And are they internal? Shoumita Dasgupta They are internal, typically. Susanna Smith So they wouldn't even be visible, someone might not know they have these. Shoumita Dasgupta Absolutely, and so that's why it might not come up until, you know, the third decade of life, or even later. Susanna Smith Yeah, and that kind of brings me to the question of what I wanted to ask next, which was, what has studying biology and gender, and specifically in this case the idea that we can do chromosomal analysis and genetic testing, what has that actually taught us about what is sex, gender, and also this other side of sexual orientation? Shoumita Dasgupta That's a great question, and I think the answer is actually even broader than sex, gender, or sexual orientation. What science has clearly shown us is that there aren't discrete categories. There is a ton of overlap. That variation is incredibly continuous. We don't have a binary sex designation. We also don't have a binary gender designation. And there's many, many varieties of sexual orientation well beyond the heteronormative framing that most of the world uses. So using science, we can really see that variation is continuous across populations. We can't draw a line that clearly separates one group from another group. And that applies to, as I was kind of alluding to, not just sex, gender, sexual orientation, but it applies to all the kinds of categories and labels we use. It applies to disability, it applies to race, ethnicity, and ancestry, you know, so just understanding what our DNA tells us is actually the story that we are much more alike than we are different. That we're all part of this amazing spectrum of human identity. Susanna Smith Yeah, and I think that's what creates this inherent tension, right? It's the reality of how human beings exist is on a spectrum, a variety across many different types of characteristics. And yet, a lot of people want to fit us into boxes. We want to fit ourselves into boxes, and we want to fit neatly but that isn't aligned with how people actually develop. So I want to turn now to the backdrop of the conversation we're having, which is that this conversation exists in a world where the administration running the United States has made political statements like: there will only be two genders. And the United States Supreme Court is expected to rule this spring on two cases involving transgender girls and women in sports. And meanwhile, the Olympic Committee has recently stated that women athletes who do not pass a gene screening test, presumably seeking to affirm their XX chromosome status, will not be allowed to participate in women's sports, which is effectively a ban on many transgender athletes. So, from the perspective of biology and some of the aspects we've been talking about around biology and sex, how do you think about transgender athletes and women's sports, and this idea around competition? Shoumita Dasgupta That's a great question, and I really I find the language used by the administration about restoring truth to the biological identity or some such language around understanding what sex is to be highly, highly harmful. And… simply untrue. When we look at the biology of sex, as I kind of alluded to earlier, we see that there is a spectrum of sex. And when we think about trans athletes, and this is a term we haven't identified yet, so let me just pause and actually kind of break down what we mean by trans athletes, somebody who's transgender. I said that gender identity has to do with who you feel you are in your heart and your mind. So somebody who's transgender has a gender identity that is slightly different from the typical one that might be predicted by your biology. So if your sex is female but you identify as a man, he would be a trans man. And trans women are frequently sort of the target of a lot of ire in the context of sport. And that's because trans women have bodies that are somewhat or fully male, depending on their own developmental program and whether they've not gone through gender-affirming care. So depending on the sport, some sports may actually find that if you've gone through puberty and been exposed to testosterone during that period of puberty, you might have increased lung capacity, you might have greater height. You might have certain physical attributes that could be an advantage. But that certainly doesn't mean that all trans women have gone through a development that gives them those advantages. The science behind it is really not at all as well-developed as the science that looks at exogenous testosterone use. That's doping, right? And also, it's very sport-dependent, you know, separating people by categories, whether you use the framing of sex, male and female, or the framing of gender, men and women, doesn't always turn out to be particularly relevant based on the sport. For example, maybe some sports would do better instead of using sex or gender-based categorizations of play, what if they used weight categories, or height categories, or something entirely different? Then that would be based, actually, in the reality of their bodies, and it wouldn't have all these harms associated with it. Susanna Smith Yeah, I think it's such a great point. One of the things I often come to when I'm sort of wrestling with this in my brain is there are a lot of aspects of any human's biology that could give them advantage or disadvantage in any given sport, right? But the one we're talking about is these ideas of sex and gender. But it could be, like, foot flexibility or shoulder movement, you know, any of these are things that might be coded in your DNA and give you unique advantage in a particular realm. And we don't pick those apart, right? Shoumita Dasgupta That is so true. One example that always comes to mind is there was a Scandinavian cross-country skier, who had a naturally occurring variation that allowed him to produce extra red blood cells. Red blood cells carry oxygen. In competing in cross-country skiing, the fact that he had this increased oxygen capacity was actually advantageous for him. And in fact, he produced so many red blood cells that his typically pale skin actually showed up as sort of reddish-purple because he had so much extra red blood cells. And, you know, there is a form of doping that involves increasing your red blood cell production, or even giving yourself your own red blood cells in excess before competition. But because his was a naturally occurring variant that's not, you know, policed, or it didn't disqualify him from competition. So, there are many examples like that where naturally occurring variation is present and can give people an advantage. But it is just part of the overall scope. I mean, that's one variable: your biological variation. But there's also your training, your coaches, your nutrition, your grit, your psychology, you know, there's so many aspects to competition, and biology is just one of them. Susanna Smith Right. I mean, I think that's the other point I come to, which is that becoming an elite athlete requires, of course, some aspect of talent, and some, probably, aspect of biological ability. Like, I am 5'1" I'm never gonna play in the women's NBA. Like, that's just not gonna happen, right? But it also requires all the other things elite athletes do on a daily basis, year -over-year-over-year to arrive at where they are. And so any sort of biological advantage is never enough. Shoumita Dasgupta That's absolutely true, and I think excluding trans...
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Episode 15: Making "Smarter" Babies: The Mythology of American Eugenics
02/03/2026
Episode 15: Making "Smarter" Babies: The Mythology of American Eugenics
Emily Klancher Merchant, PhD, author of “” in the Los Angeles Review of Books, talks about how “intelligence—not race—has always been at the center of American eugenics.” She cautions that “eugenics does not work by breeding smarter humans;” no technology has been shown to do this but the widespread, American belief that intelligence is primarily genetic is allowing governments to shirk responsibility for ameliorating social inequality and promote projects that favor those who are already priviliged. Full episode transcript at: GUEST BIO , is a historian of science, technology, and medicine, focusing on the human sciences in the United States since World War I. She is Associate Professor of Science and Technology Studies at the University of California at Davis. RESOURCES Emily Klancher Merchant. . Oxford University Press. 2021. Emily R. Klancher Merchant. “.” Los Angeles Review of Books. August 22, 2024. Elizabeth Catte. . Arcadia Publishing. 2021. Molly Ladd-Taylor. . John Hopkins University Press. 2020.
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Episode 14: Medical Genetics & Eugenics: Two Sides of the Same Coin
11/20/2025
Episode 14: Medical Genetics & Eugenics: Two Sides of the Same Coin
Nathaniel Comfort, PhD, author of The Science of Human Perfection: How Genes Became the Heart of American Medicine and a forthcoming biography on James Watson, talks about medical genetics and eugenics as “two sides of the same coin,” and cautions that there is no simple, bright line between the two pursuits. KEY TOPICS Reading from by Nathaniel Comfort, PhD How should clinicians and prospective parents think about the argument that there is no bright line between genetic interventions to relieve suffering v. human engineering or population improvement? What are the contingent problems created between distinguishing between genetic interventions for a fatal disease v. a non-fatal disease? How did the end of World War II and the dropping of the atomic bombs rejuvenate Americans' interest in science and genetic disease? How do we talk about genetics today in a way that embraces the actual complexity of the science? In the current moment of sea change, what is the cultural authority of science in the United States? Discussion of Dr. Comfort’s new biography of James Watson, his enormous contributions to the field of human genetics and also his downfall. Check out this episode & all . Have a story about how genetic information has changed your life? We invite you to talk about it through .
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Episode 13: When You Realize the Foundation Is Made of Sand
11/07/2025
Episode 13: When You Realize the Foundation Is Made of Sand
In this open and vulnerable conversation, host Susanna Smith talks with Tiffany Graham Charkosky, author of Living Proof: How Love Defied Genetic Legacy, about their shared experiences of living with genetic risks, in Tiffany's case Lynch syndrome and in Susanna's case CADASIL. They chat about the unique psychological state of living for decades as a healthy person who is also at risk of a serious disease, their feelings of guilt, responsibility, and shame, and the spaciousness that can be found in contemplating your own death. Resources Tiffany Graham Charkosky. . Little A Publishing. 2025. Tiffany Graham Charkosky. . Oprahdaily.com. Sept. 29, 2025. Brought to you by .
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Episode 12: Genetics & the American Far Right
07/28/2025
Episode 12: Genetics & the American Far Right
Guest Alexandra Minna Stern, PhD, author of Proud Boys and the White Ethnostate talks about how the American far right views genetics, genetic technologies, eugenics, and science and the emerging political threat of 21st century eugenics ideology and policies. Transcript Susanna Smith Hi everyone, I’m Susanna Smith. This is Genetic Frontiers, a podcast about the promise, power, and perils of genetic information. Find us wherever podcasts are found and go to GeneticFrontiers.org to join the conversation about how genetic discoveries are propelling new, personalized medical treatments but also posing ethical dilemmas and emotional quandaries. This season we’re focusing on Genetics in American Politics & Culture. We talk with historians, journalists, technologists and philosophers about the alluring but dangerous pursuit of improving the human species through genetics. We discuss how ideas about people’s genetic worth and worthiness are driving American politics and policy today. On today's episode, I will be talking with Dr. Alexandra Mina Stern. Dr. Stern is a professor of English and History and works at the Institute for Society and Genetics at UCLA. Professor Stern has spent her career researching and writing about the dark history of eugenics in the United States and elsewhere. Her work digs deep into how eugenic ideologies, past and present seek to categorize people, and assign them value. based on false ideas about biological or genetic superiority. The aim of these dangerous ideologies is to improve the human race by controlling who can and cannot have children. Professor Stern was a guest on an earlier episode of Genetic Frontiers, . But today, we're going to retread some ground that Professor Stern covers in her book, , which explores the culture of the American far right, including far-right views about genetics and eugenics. So thank you for coming back on Genetic Frontiers, Professor Stern. Alexandra Minna Stern Thank you for having me. So many of our listeners are genetic counselors or clinicians. Susanna Smith Can you talk a little bit about how the far right views genetics and genetic technologies? Alexandra Minna Stern First of all, there is really a concern with demography, and as you have seen in the news, with baby making and a panic over fertility in the United States or lack thereof. And far-right leaders have really been endorsing pronatalism and the use of, not all of them, some of the pronatalists reject genetic technologies because they view them as unnatural, but a good number are what we would call, kind of like techno-utopians. And they want to create a world using genetic technologies such as IVF, genetic selection from embryos, and potentially even using information from GWAS studies and other types of large-scale genetic data to make decisions about their offspring and perfecting their own offspring. And that is an idea that they want to expand more generally to kind of solve the supposed crisis of depressed fertility in America. These conversations are happening in other countries as well where there are low fertility rates, but they've really taken off in the United States. For example, with the that happened at UT Austin, which was all focused on pronatalism and on using different reproductive and genetic technologies in the service of bolstering birth rates. I'd like to note that, you know, the language that was used in that conference and that you will often read about in the media is one that kind of sidesteps the issue of race and tries to paint a picture of this as kind of more racially inclusive. But if you scratch the surface of people like the Collins family that's promoting this, or others who were at that conference, what you will find is that they are often referencing some of the more suspect literature that focuses on race and IQ scores. So, for example, or others, demographers or psychologists who have been discredited for really pushing unconfirmable ideas about the relationship between race, ethnicity, gender, and IQ. So that's one way in which we're seeing this techno-utopianism merging with the far right to really push forward ideas of what the future of America should look like. Another aspect of what's happening that really concerns me, when I think about the good work that so many genetic counselors are doing out there in the world and trying to be ethical and share the results of genetic tests with patients and clients, is that many of the products that are being used and have been created are becoming more and more unregulated. Now, in general, they have been less regulated in the United States than they have been in other countries, for example, you know, in Europe and so on. But what we're seeing now is, you know, with the push towards deregulation of so many aspects of health and environment under the Trump administration that it is more and more likely that it's going to become even a wilder west out there in terms of the deregulation and the ultra-commercialization of genetic tests and technologies. Such that it's just private individuals, so to speak, who are purchasing and using these technologies. Obviously, some individuals have the resources and the money to do so, and, you know, many others will not have that opportunity, which in and of itself creates a massive inequality in terms of access to more broadly, genetics as healthcare, genetics as kind of informing health decisions, and so on. So that's another way in which I see this playing out, and it really concerns me because it means that genetic counselors or purveyors of genetic information, those who are working in, be it academic settings or, you know, public health settings, you know, potentially have less and less control over access to the services and the technologies that they're using. And I don't know what's going to happen with insurance and reimbursement, but that's a whole other area that I'm sure will be tested in the years to come. Susanna Smith Yeah, I just want to pause there and explore this a little bit, because there was, of course, the . If you don't sort of sit in the Collins' camp of maybe the most extreme pronatalist pursuit, but for a genetic counselor perhaps someone just shows up and says, ‘Well, I want to select my embryos; I want the smartest babies.’ Can you talk a little bit about the history in American culture of trying to choose smarter children, and then the flip side, the science of what we know about the relationship of heredity and intelligence? Alexandra Minna Stern It is not proven that there is an association between genetics and intelligence, so that's one thing. I mean, there's no, like, hard and fast proof. What's more interesting, in a way, is that there has been a quest to determine that and to prove that for the past 100 plus years. So if you go back to the early eugenics movement, you know, one of the initial concerns of eugenicists was really to identify through looking at family studies, looking at pedigree charts, that there was a kind of causal relationship, not even a correlation, but a causal relationship that you could see being passed down from generation to generation, or perhaps skipping a generation due to recessive genes for traits such as intelligence and criminality. And if we think back to the eugenics movement, one of the most popular terms that, you know, was also one that induced a lot of anxiety was the idea of “feeble-mindedness.” And that was really connected to IQ. So, someone who had an IQ of less than 100 was viewed as less than normal, someone who had an IQ of 140 was viewed as potentially a genius. Those who had IQs that were in the lower ranges, anything below 80, according to Lewis Terman, who developed these scales, a label would be attached to them, such as, you know, not only “feeble-minded,” but broken down even more, with more precision to “idiot,” “moron,” “imbecile,” and so on. So, this idea that disability or, you know, cognitive defectiveness could be measured through genetics or looking at heredity has a long, long history. Then, of course, that was attached to gender, it was attached to race, but that kind of disability or concern or, like, the ableism that was at the heart of the eugenics movement is still very much with us today. That's something that does get underplayed in some of the media stories. At the same time, what's underlying all of it is really a very strong ableism, which, to me, I see throughout, whether it is an individual going to a genetic counselor saying, ‘Look, I want to take the most up-to-date tests and get the best results, to have the best baby possible,’ or something like the pronatalist movement with the Collinses, who are using all the technologies at their disposal to have superior babies. Ultimately, you know, the first criteria there is that the baby, the offspring will not be disabled. It will be physically, mentally, cognitively normal, if not superior. And so, the ableism underlying all of this, it's been at the root of eugenics from the beginning. And it is sitting at the core of the pronatalist movement today. And of the anxieties that potential parents bring into the genetic counselor's office when they want to come in and get tests. And on some level, you know, we can understand that people want to have healthy children and healthy babies. We live in a culture where disability is so maligned and so misunderstood, and the spectrum of what is considered basically being a normal human being, or celebrating human variation is so restricted that…. It really is, I mean, I don't know what else to say about that but you get the point. Susanna SmithYeah, and I agree. One of the things I want to jump in and say is even how we define disability we need to understand as, like, a cultural norming because you can also see many of these things as difference potentially, and not always, sometimes it's a source of genetic difference that doesn't mean it is a disability. Alexandra Minna Stern We can see this vicious ableism in the recent comments and the policies promoted by Kennedy, who's now the head of HHS, who went into , saying that they would never have families; they would never have jobs; they would never be able to do this. In other words, they didn't qualify, really, to be productive citizens, and to be full human beings because of their autism. Now he wants to start a registry for people with autism. Well, that sounds a lot to me like the registries that eugenicists wanted to create in the early 20th century so that they would be able to track everyone who was identified as “feeble-minded,” or having some other dysgenic trait, really kind of state by state. So that kind of idea of a registry for people with autism does send chills down my spine. And is really reminiscent of the push that eugenicists made in the early 20th century that was then very much intertwined with sterilization programs and state reproductive control from about the 1900s to the 1950s. Susanna Smith Yeah, well, and in some of your work, you show it goes even later. Alexandra Minna Stern Yes, I mean, definitely, I'm thinking of the states, you know, what happened in the states that passed laws. But yeah, I mean, this is still going on. I mean, this hasn't completely gone away, and some states allow for and have even promoted through their criminal legal systems, the sterilization of people seen as defective for a range of different reasons, be they biological, psychological, or social. Susanna Smith Yeah, and I just want to back up to the autism registry, because it raised such huge red flags for me as well how that could play forward in terms of really depriving people of rights. And the other piece I found really interesting about it is we see sort of these two camps within the far right: so this very discriminatory and misinformed views of what it means to be autistic. Simultaneously, we see people like the Collinses who have been very forthcoming about at least one of them identifies as autistic and that they choose to select embryos that are autistic. So, I think there are these competing views specifically around autism, within even the camp that is the far right. Alexandra Minna Stern Well, that is true, but that also goes back to the IQ scales developed by Turman, where unproductive autistic people who had IQ scores of 80 and below were viewed as undesirable. But autistic savants are those who were trending into the genius category or the superior category were viewed as more desirable because they were so unique, and they were so smart. Susanna Smith Yeah, I think that's a really important point, sort of the ties between value judgments being placed on autism and its links to intelligence. And intelligence really being this foundational view of eugenics, where people are ranked based on ideas, false ideas often, about whether or not they are intelligent, and intelligence being the path to being a contributing member to society. But when I really think about this word, “eugenics,” I often feel like it's a word that circulates in academic circles. But what we're really talking about with eugenics is this idea of bettering humanity, and I'm doing air quotes here, “bettering humanity” through choices about reproduction. Do you think it matters whether this idea, the idea of eugenics, actually influences this administration? Alexandra Minna Stern When you look at the early 20th century eugenics movement, you see that it was… the ideas were really popular. And there were things like Better Babies contests, or Fitter Family contests that people participated in across the country, and that kind of made it more palpable and more interesting. Everyone wanted, you know, parents wanted to learn about having healthier children and things like that. That is what has been deemed kind of the more positive eugenics although it has obviously an underbelly of white supremacy and exclusion that's part of all aspects of positive eugenics. Really where you see more of the harms happening is in the area that has been called negative eugenics, or that is associated with euthanasia, which was taken to its greatest extreme and the “Final Solution” in Germany but also with sterilization policy. And that is where the state and health officials actually had the power to dictate whether someone would maintain their reproductive liberty or not. And so that seems really important to think about what is, what was the power of the state during the heyday of eugenics when these policies were in place from the 1900s to the 1960s, right? So, which allowed for and authorized officials to sterilize individuals who are deemed “unfit.” Now, that changed in the 1960s and 70s and into the 80s, although we continue to see sterilization abuse, sometimes funded by federal dollars in sites of confinement such as prisons and other institutions. And certainly, you know, it has continued on to this day in pockets here and there supported still by, you know, these same ideas. So what concerns me is really thinking about how the power of the state, and here we're talking about both individual states, but the power of the federal government to actually come in and mandate sweeping reproductive policy, potentially through executive orders that could cause the same, if not worse, type of harms as we saw in the early 20th century.A lot of this now revolves around kind of anti-abortion policies and support for that. On one level, it seems a little counterintuitive to think that, you know, if there's such strong proponents against abortion, quote-unquote “pro-life,” although that's a problematic term in power now, well, how could they also then support sterilization, which is about people not having babies? Well, it's really two sides of the same coin that we see in countries or polities in which the state has a lot of control over reproduction through policies, laws, and other practices that are implemented on a regular basis. So, that's something that I'm very concerned about. So let's go back to our autism discussion, this registry of people with autism is created, let's say that that then is the precedent for another set, you know, another registry of people with a certain type of disease let's say it's actually a genetic disease that has been more codified, or let's say it's kind of a more social or psychological trait. What then happens with those registries if certain people should be having babies, well then, should certain people not be having babies? I mean, if you follow the logic through it is not that far-fetched to think, you know, we could, if the rate things are going in the next, you know, year, two years, to be in a place where actually there are certain orders that come down. I don't know the extent to which Congress would support them. I would obviously hope not. They would obviously end up being fought in the Supreme Court, and we'd have to see how that played out. But these are the types of deprivation liberty through reproductive control based on eugenic ideas that we could see playing out in the next few years. I mean, that's… it's a very scary prospect, but the seeds are being planted for this. And the ideology is more than in the air, it's actually being supported and perpetuated and expanded through different domains in American society. You know, it is as Ezra Klein, who I like to listen to on the podcast, said, he was talking about deportation policy and what happened with Abrego, “The emergency is here.” And I would say the emergency has been here for a while around reproductive politics, but it's definitely here as well with the prospect of, you know, a kind of 21st century eugenics ideology playing out at the level of the federal government. And that, I just want to reiterate, you know, yes, was upheld by the Supreme Court in 1927. And ironically, it's still on the books, although it has been diluted by a range of different decisions that were, you know, made really starting in the 1950s and 60s. The Supreme Court upheld in 1927 the right of states to sterilize people based on their supposed “unfitness.” Susanna SmithYeah, and I just want to back up to this point about Buck v. Bell, and just point to sort of how very old, 200-year-old laws are being used currently to deport people. So, I think it is more relevant than ever to look at laws that we might have considered historical but that could be turned to, and how they could be deployed today. That's just frankly terrifying. Alexandra Minna Stern Well, I think, you know, you're right, and what, you know, I was talking before about how when I was looking at the alt-right and white nationalists, they, you know, their vision, their ideal vision is of, like, 1950s America. It's a totally romanticized, mythologized vision that comes in part from TV shows and Norman Rockwell paintings and things like that, but really, you know, what we're seeing now is a push to go back to the 18th century, you know, a time when slavery was still the law of the land. And this is something else that is crucial to what's going on right now, is that there is a battle over the telling of American history and whose history is being told. The version that is being promoted is one that takes us all the way back to these, you know, late 18th century ideas of who is an American, and their ideas of white supremacy, and a certain kind of White republic version of America. And those versions of whose history is being told and what history should be literally, like, erased through removing exhibitions, stopping exhibitions, archival materials, you know, being purged or being taken offline, and so on and so forth. I mean, that is something that, as a trained historian obviously, I'm very concerned about, and that has to do with the...
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Episode 11: The Most Dangerous Thing Donald Trump Believes
06/03/2025
Episode 11: The Most Dangerous Thing Donald Trump Believes
Part of Genetic Frontiers Season 2: Genetics in American Politics & Culture, Sue Currell, PhD, discusses the disturbing echoes of eugenic thinking in American politics today. She calls eugenics “the backbone of political control and a progressive meritocracy,” and argues that “grip of eugenic ideas on American politics today is a political failure to imagine a world where value is not profit.” Visit to hear more episodes on the promise, power, and perils of genetic information. KEY TOPICS Reading of excerpts from “ How should we understand the administration’s agenda to “forge a society that is colorblind, merit-based, and only has two genders” in light of the eugenic history of the United States? How are you making sense of this focus on the gender binary, and whether it has a relationship to eugenic ideologies? From what you know about the history of efficiency in the United States, how are you thinking about the new Department of Government Efficiency? What is the story we're being fed by politicians? And what is the real story? How would you describe Trump's relationship to disability rights? Can you talk about the complicated histories of eugenics and abortion rights and how you think this is influencing America today? How do you think clinicians and scientists should be thinking about the role of science, in particular genetics, in America today? Read .
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Episode 10: Eugenic Thinking & The Race to Build AGI
05/06/2025
Episode 10: Eugenic Thinking & The Race to Build AGI
Timnit Gebru, PhD, AI expert, advocate, and founder of the Distributed AI Research Institute (DAIR) and Émile P. Torres, PhD, a philosopher, discuss how eugenic ideologies are influencing Silicon Valley and driving the push for artificial general intelligence. They talk about how eugenic thinking pervades American culture, including Big Tech and medicine, and is foundational to the worldviews of some of the powerful people in the United States today. KEY TOPICS Introduction to main idea of TESCREAL paper: the cultural push to develop artificial general intelligence is undergirded by eugenic thinking Dr. Timnit Gebru discusses her intellectual journey of tackling bias and discrimination in technology and becoming a vocal critic of Big Tech Review of the core ideas of the philosophies in the TESCREAL bundle (Transhumanism, Extropianism, Singularitarianism, Cosmism, Rationalism, Effective Altruism, and Longtermism) Concrete examples of how TESCREALism is playing out in the United States today Why is it important to interrogate “the why” in our efforts to build artificial general intelligence? How does the TESCREAL framework serve as a jumping off point for taking a critical eye towards genetics and genomics research? Dr. Timnit Gebru & Dr. Émile P. Torres discuss their greatest fears about the future of eugenic thinking in American culture Thought experiment: how could knowing our likely date of death and cause of death from birth change our relationship to mortality?
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Episode 9: Breeding "Better" Humans & Other Dangerous Ideas Driving American Politics
04/01/2025
Episode 9: Breeding "Better" Humans & Other Dangerous Ideas Driving American Politics
A conversation with an award-winning science journalist and author, Angela Saini, about the alluring but dangerous pursuit of “improving” the human species through genetics and how it's driving American politics and policy today. TOPICS The ideology of eugenics is fundamentally driven by a pursuit that can seem deceptively desirable: the “improvement of the human species.” What does it really mean to “improve” people? How does the pursuit of perfection drive eugenic thinking? How are you thinking about efforts today to scrub scientific research of engagement with gender and race? Across human history how have people thought about biological sex gender and social roles? What did DNA testing bring to the conversation about how patriarchy spread? What do you think medical and genetics professionals should really be paying attention to in terms of how science, in particular genetics, is being discussed today culturally and politically? How does taking a long view of human history inform how you're thinking about the political moment we're living through right now? Do you think the left / progressives have a cohesive story that people want to hear? For episode show notes and resources go to: https://www.geneticfrontiers.org/episode9-angela-saini
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Episode 8: The Black Genome Project
01/14/2025
Episode 8: The Black Genome Project
In this episode, Chelsey Carter, PhD, and Brett Maricque, PhD, founders of the Black Genome Project ( talk about their work to understand how Black communities value their genomes and genetic data, how genetic research is impacting Black communities in St. Louis, and whether genomic sequencing is valuable for everyone. TOPICS Introduction to the Chelsey Carter, PhD; Brett Marique, PhD, and the Black Genome Project Discussion of how the Black Genome Project is collaborating with the Black community in St. Louis, its local nature, and how the team is collecting data Discussion of how the Black Genome Project is using storytelling, focus groups, structured surveys and why they chose this approach What has been the most powerful part of what have you heard from the Black community in St. Louis? How do you approach people as an expert in their own lived experience within healthcare and genetics? How can the Black community exercise agency over their genetic information? Discussion about understandings about nature v. nature and genetic literacy How do you talk about ideas like rejecting race as biology, race as a social construct, racism underlying health disparities and the need to diversify genomic data sets? Where the Black Genome Project is headed in the future
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Episode 7: Genetic Difference, Disability, and Inclusion
12/17/2024
Episode 7: Genetic Difference, Disability, and Inclusion
In this episode, Arielle Silverman, PhD, Director of Research for the American Foundation for the Blind, discusses genetic difference and disability, including her own congenital blindness and the need to move towards a more inclusivity-focused mindset. She shares insights from her book Just Human: The Quest for Disability Wisdom, Respect, and Inclusion as well as her research. KEY TOPICS Introduction to genetic difference & disability, Dr. Arielle Silverman, Director of Research for the American Foundation for the Blind [00:00 - 4:15] Excerpt from Arielle Silverman’s book, Just Human: The Quest for Disability Wisdom, Respect, and Inclusion [4:15 - 8:33] Can you talk about your research on disability simulation exercises and emotional perspective taking? [8:34 - 13:30] Do you think true empathy building exercises are even possible for better understanding the experiences of people living with disability and difference? [13:30 - 15:07] What are the five stages of inclusion related to people with disabilities or difference that you write about in your book? [15:07 - 20:24] How do you think we can shift people's mindset around inclusion? [20:24 - 22:24] What do you wish people and clinicians understood better about your lived experience as a blind woman, advocate, and researcher? [22:24 - 25:14] Given that genetic screening and testing has become a standard of care in prenatal medicine, how do you think genetic counselors should approach prospective parents when talking about the wide variety of genetic differences and disabilities? [25:15 - 29:55] Could you describe the differences between how a blind person and a sighted person does complex math? [29:56 - 35:15] Do you consider being blind a form of neurodivergence since your brain is doing the same things, but just going about it differently? [35:16 - 36:43] Can you talk a little bit about that work and your views about how we can better support kids with disabilities? [36:44 - 39:37] Wrap up [39:37- 41:08]
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Episode 6: The Eugenesis of Genetic Counseling
12/03/2024
Episode 6: The Eugenesis of Genetic Counseling
Eugenics is at the core of the emergence of the genetic counseling profession. In this episode, Alexandra Minna Stern, PhD, the Humanities Dean at UCLA, a historian, and researcher, discusses how this entanglement casts a long shadow over the profession and offers important historical context for some of the present day challenges facing the fields of genetics and genomics. KEY TOPICS Introduction to the Professor Alexandra Minna Stern and background on the genetic counseling profession and the eugenics movement [0:00 - 04:05] Reading of excerpt from [04:05-11:01] Why did you choose to tell this history of genetic counseling? And how did you reconstruct it? [11:02-12:55] Can you describe what you call the eugenesis of the genetic counseling profession, and how you think it influences the practice of medicine and genetics today? [13:56 - 19:50] How prevalent were eugenics views among the genetics profession as a whole? How did eugenics affect research priorities or funding? [19:51 - 25.03] How would you describe overall the relationship of the genetic counseling profession to race historically and in current day practice, given that the genetic counseling profession today is overwhelmingly white? [25:03- 29:39] Can you talk a little bit about the work you do in the lab around forced sterilizations? And also your research into this topic? [29:39- 35:21] What types of people were targeted with forced sterilization? Where were they performed? [35:22 - 43:08] Historically, how have you seen genetic counselors or geneticists contribute to this reductionist thinking about people living with genetic difference? And on the flip side, how have some medical professionals worked to expand the profession's approach to genetic difference in disability? [43:08-54:12] Wrap up [54:15-56:40]
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Episode 5: Informed Consent & Prenatal Genetic Testing
11/12/2024
Episode 5: Informed Consent & Prenatal Genetic Testing
“Informed consent” has long been held up as the gold standard of patient care in Western medicine. In this episode of Genetic Frontiers, Blair Stevens, MS, CGC, Director of Prenatal Genetic Counseling Services at McGovern Medical School at UTHealth Houston talks about what informed consent means when it comes to making hundreds of choices about genetic testing around pregnancy. She also discusses the computer module a team at UTHealth Houston created to support prenatal genetic decision-making and the genetic counseling process. KEY TOPICS Introduction to the history of informed consent [0:00-3:03] Background on prenatal genetic testing [3:03-5:45] Introduction to Blair Stevens, CGC and her work at UTHealth Houston [5:45-6:59] Why did the UTHealth Houston team build a computer module to support genetic counseling? And how does it work? [07:00 - 9:18] What percentage of patients are using the computer module? And which ones? [9:18- 10:51] What does meaningful, informed consent really means in the setting of prenatal genetic counseling? [10:52 - 13:07] With the menu of prenatal genetic testing options ever expanding, how does that change decision making? [13:08-15:57] How has offering patients a menu of options in prenatal genetic testing affected the experience? [15:57 - 18:08 ] What are some of the different ways people deal with genetic information when they're trying to expand their families? [18:09 - 19:55] Do we need to make a larger cultural shift around ideas of genetic difference and disability? [19:55 - 22:23] Discussion of genetic underpinnings of many common or chronic illness and what those mean for prenatal care [22:24 -:24:12] What do you see as the future in terms of full genome sequencing and prenatal genetic decision-making? [24:12 - 26:24] What would it mean for their lives going forward if we start sequencing all people or many people when they are newborns? [26:24 - 30:44] Discussion of how knowing your genetic health risks could affect your insurability & wrap-up. [30:44 - 33:08]
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Episode 4: Cancer in the Family? What You Need to Know About Hereditary Risk
10/29/2024
Episode 4: Cancer in the Family? What You Need to Know About Hereditary Risk
Episode Summary In this episode, Lisa Schlager, the Vice President of Public Policy at FORCE, a national advocacy organization, discusses genetic testing, prevention, treatment, and legal protections for people at risk for hereditary cancer. KEY TOPICS Introduction: concerns of people at risk of hereditary cancer; FORCE, a national advocacy organization; and Lisa Schlager, VP of Public Policy at FORCE [00:00 - 3:15] Tell us about your personal journey with hereditary cancer, and how you got involved in advocacy work? [3:15 - 11:23] What is GINA, the Federal Genetic Information Nondiscrimination Act, and what protections does it offer–and fail to offer—for people living at risk of genetic disease? [11:23-14:01] How FORCE is advocating with state legislatures to expand anti-discrimination protections beyond those offered by federal law? [14:01 - 16:50] What are some specific examples of issues you're working on at FORCE to help make sure that people living at risk of hereditary cancer get the healthcare they need? [16:50 - 20:01] What does Medicare cover when it comes to genetic testing for hereditary cancer? [20:02 - 22:06] Why is it so important for healthcare providers and people to understand if they have a risk of developing hereditary cancer? [22:07 - 24:50] What are some resources for people who are concerned that cancer in their family could be hereditary? [24:50 - 26:33] What can healthcare providers do to help people understand and respond to the potential inherited risks of cancer? [26:34 - 30:53] Wrap-up [30:54 - 32:18]
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Episode 3: Prenatal Genetic Counseling Unlike Therapy in Any Other Setting
10/14/2024
Episode 3: Prenatal Genetic Counseling Unlike Therapy in Any Other Setting
Episode Summary In this episode, Kendra Schaa, ScM, LGC, a prenatal genetic counselor at a major medical center talks about the importance of the therapeutic model in meeting patients where they are. She also discusses how prenatal genetic counseling is influenced by the profession’s roots in biology over psychology, the skyrocketing number of genetic tests, and the overturning of Roe v. Wade. Full episode & transcript at: https://www.geneticfrontiers.org/episode3-kendra-schaa KEY TOPICS Introduction to personal story of prenatal genetic counseling and history of genetic counseling profession How does genetic counseling’s roots in the field of biology more than psychology or therapeutic counseling influence the profession today? How does the genetic counseling interaction need to change? With so many genetic tests out there, how do you think genetic counselors can best support patients to decide what tests are right for them? What tools do you think genetic counselors need? Can you talk a little bit about Allay Life and your focus on providing therapeutic support to people during their reproductive journey? As a genetic counselor, what do restrictions on women's rights to choose when to terminate a pregnancy mean for how you counsel them? How do you think genetic counselors can be champions of the future of genetics in medicine? Resources hosted by Allay Life. : Light in the Unexpected Pregnancy Journey. Allay Life. . Schaa KL, Biesecker BB. Patient Educ Couns. 2024 Jul;124:108278. doi: 10.1016/j.pec.2024.108278. Epub 2024 Mar 29. Masha Gessen. . 2008. Seymour Kessler. . 1979.
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Episode 2: How DNA Testing is Shaking Up the Sperm Banking Industry
10/01/2024
Episode 2: How DNA Testing is Shaking Up the Sperm Banking Industry
In this episode of Genetic Frontiers, Katie Lee Hornberger, a certified genetic counselor with the Seattle Sperm Bank talks about how genetic testing has shaken up the sperm banking industry. DNA testing has changed everything, forcing the industry to move from a paradigm that prized anonymity towards one of greater transparency about biological relationships, genetic risks, and family medical history. Go to episode details on KEY TOPICS Introduction to the sperm banking industry Introduction to Katie Lee Hornberger, CGC How has genetic testing changed the sperm banking industry? What types of genetic or health conditions rule out a person's ability to be a donor? Do you test donors for CADASIL, for example? If you don’t, how do you explain to potential recipients that donors may have unknown genetic risks? How would you describe the culture of risk within the gamete donor community? Not allowing some groups of men to donate sperm could be viewed as discriminatory or eugenic, so why do sperm banks have these limitations in place and what they mean for families who are using sperm to form their families? Given our ever-changing understanding of people’s genetic risks, what do you see as the future of spermaking and sperm donation? Following the legal trend towards greater openness and transparency in sharing genetic and medical information with donor-conceived people, what does this mean practically for places like the Seattle Sperm Bank? What, if any, relationship do sperm bank recipients continue to have with the sperm bank after donation? Do sperm banks conduct a genetic screening on sperm bank recipients, ie, the women who use sperm donations to try to conceive? How does the sperm bank handle the situation when a donor-conceived child is later found to have a genetic condition? How are sibling limitations supposed to work? Wrap-up Resources Peter Boni. Green Leaf Book Press, 2022. American Society of Reproductive Medicine. 2021.
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Episode 1: Finding Meaning in Life & Genetics
09/14/2024
Episode 1: Finding Meaning in Life & Genetics
In this episode, Nerine Gregersen, MD, a former pediatrician, clinical geneticist, and logotherapist, discusses how learning genetic information about oneself can have profound emotional and existential impacts. She talks about how logotherapy, a form of psychotherapy that emphasizes finding meaning as people’s primary motivation, can help support people navigating difficult diagnoses or profound life shifts triggered by genetic discoveries. Go to episode details on
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Episode 0: Living at Risk
09/14/2024
Episode 0: Living at Risk
In this episode of Genetic Frontiers, host, Susanna Smith, MPH, shares her personal story of living as a previvor of an incurable, genetic disease, which is part of the impetus for the podcast and at the center of a book she is working on. Get episode details on .
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