Episodes

  • Privacy, Discrimination & Your Genetic Data

    Privacy, Discrimination & Your Genetic Data
    Jun 25 2026
    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 ...
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    45 mins
  • Sex Testing in Sports: Bias & the Science of Genetic Variation

    Sex Testing in Sports: Bias & the Science of Genetic Variation
    Apr 21 2026
    A 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 ...
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    50 mins
  • Episode 15: Making "Smarter" Babies: The Mythology of American Eugenics

    Episode 15: Making "Smarter" Babies: The Mythology of American Eugenics
    Feb 3 2026

    Emily 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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    43 mins
  • Episode 14: Medical Genetics & Eugenics: Two Sides of the Same Coin

    Episode 14: Medical Genetics & Eugenics: Two Sides of the Same Coin
    Nov 20 2025

    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 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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    33 mins
  • Episode 13: When You Realize the Foundation Is Made of Sand

    Episode 13: When You Realize the Foundation Is Made of Sand
    Nov 7 2025

    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. 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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    1 hr and 36 mins
  • Episode 12: Genetics & the American Far Right

    Episode 12: Genetics & the American Far Right
    Jul 28 2025
    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, 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 ...
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    37 mins
  • Episode 11: The Most Dangerous Thing Donald Trump Believes

    Episode 11: The Most Dangerous Thing Donald Trump Believes
    Jun 3 2025

    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 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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    29 mins
  • Episode 10: Eugenic Thinking & The Race to Build AGI

    Episode 10: Eugenic Thinking & The Race to Build AGI
    May 6 2025

    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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    49 mins