Podcast
Genetic Frontiers
Hosted by Susanna Smith & Brandy Mello · EN
A podcast about the promise, power, and perils of genetic information (geneticfrontiers.org)
10episodes
Episodes
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Privacy, Discrimination & Your Genetic Data
4w ago00:44:43Tap to summarizeSusanna 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 informatio...
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Sex Testing in Sports: Bias & the Science of Genetic Variation
Apr 2100:49:50Tap to summarizeA conversation with Shoumita Dasgupta, PhD, a geneticist, anti-racism educator, and the author of Where Biology Ends and Bias Begins: Lessons on Belonging from Our DNA 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 geneticfrontiers.org 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, Where Biology Ends and Bias Begins: Lessons on Belonging from Our DNA. 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 testin...
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Episode 15: Making "Smarter" Babies: The Mythology of American Eugenics
Feb 300:43:06Tap to summarizeEmily Klancher Merchant, PhD, author of "Breeding for IQ" 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: https://www.geneticfrontiers.org/transcript-ep-15 GUEST BIO Emily Klancher Merchant, PhD, 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 https://www.emilyklancher.com/ Emily Klancher Merchant. Building the Population Bomb. Oxford University Press. 2021. Emily R. Klancher Merchant. "Breeding for IQ." Los Angeles Review of Books. August 22, 2024. Elizabeth Catte. Pure America. Arcadia Publishing. 2021. Molly Ladd-Taylor. Fixing the Poor. John Hopkins University Press. 2020.
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Episode 14: Medical Genetics & Eugenics: Two Sides of the Same Coin
Nov 2000:33:05Tap to summarizeNathaniel 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 The Science of Human Perfection: How Genes Became the Heart of American Medicine 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 Genetic Frontiers episodes. Have a story about how genetic information has changed your life? We invite you to talk about it through The TellMe Project.
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Episode 13: When You Realize the Foundation Is Made of Sand
Nov 701:36:18Tap to summarizeIn 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. Living Proof: How Love Defied Genetic Legacy. Little A Publishing. 2025. Tiffany Graham Charkosky. Why I'm Participating in a Cancer Vaccine Trial. Oprahdaily.com. Sept. 29, 2025. https://tiffanygrahamcharkosky.com Brought to you by The Tell Me Project.
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Episode 12: Genetics & the American Far Right
Jul 2800:36:31Tap to summarizeGuest 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, Episode 6 about the eugenic origins of the genetic counseling profession. But today, we're going to retread some ground that Professor Stern covers in her book, Proud Boys & the White Ethnostate, 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 recent conference 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, Charles Murray and his ideas about race and IQ, 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 executive order sort of expanding access to IVF. 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...
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Episode 11: The Most Dangerous Thing Donald Trump Believes
Jun 3, 202500:29:24Tap to summarizePart 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 geneticfrontiers.org to hear more episodes on the promise, power, and perils of genetic information. KEY TOPICS Reading of excerpts from "This May Be the Most Dangerous Thing Donald Trump Believes": Eugenic Populism and the American Body Politic. 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 full transcript of this episode here.
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Episode 10: Eugenic Thinking & The Race to Build AGI
May 6, 202500:48:54Tap to summarizeTimnit 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
Apr 1, 202500:36:50Tap to summarizeA 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
Jan 14, 202500:43:46Tap to summarizeIn this episode, Chelsey Carter, PhD, and Brett Maricque, PhD, founders of the Black Genome Project (https://www.blackgenomeproject.org/) 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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