Genetic Frontiers

Part 3 of 3: A long-form conversation with Lauren Holder, host of the Help4HD podcast and a rare disease advocate, who lives with Huntington's disease. Lauren and Susanna talk about how they think and talk about the possible futures when living at risk, the difficult path to having children, and the judgement they've experienced from others especially medical providers.  Find the show notes for episode 20 here: https://www.geneticfrontiers.org/transcript-ep-20  This episode is brought to you by The Tell Me Project, a story archive and a listening project where we host conversations with people about the meaning of genetic information in their lives. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the conversation.

Part 2 of 3: A long-form conversation with Lauren Holder, host of the Help4HD podcast and a rare disease advocate, who lives with Huntington's disease. In this episode, Lauren and Susanna dig into family silence, shame around genetic disease, walking head-long into vulnerability, which Brene Brown calls the path to whole-hearted living.  Find the show notes for episode 19 here: https://www.geneticfrontiers.org/transcript-ep-19.   This episode is brought to you by The Tell Me Project, a story archive and a listening project where we host conversations with people about the meaning of genetic information in their lives. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.  

A long-form conversation with Lauren Holder, host of the Help4HD podcast and a rare disease advocate, who lives with Huntington's disease. In this episode (part 1 of 3), Lauren talks about how her family learned about their risk for Huntington's when Lauren was 15, her experience seeking genetic counseling and testing for Huntington's when she was 20, and the huge gap that still exists in getting previvors the support that they need, especially mental healthcare.  Find the show notes for this episode here.  This episode is brought to you by The Tell Me Project, a story archive and a listening project where we host conversations with people about the meaning of genetic information in their lives. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.      

Anya Prince, JD, a legal scholar and professor at the University of Iowa College of law talks about what the law does—and doesn't—offer you when it comes to protections for privacy or against discrimination using your genetic data. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.  

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. Find the show notes for episode 16 here.  Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.

Emily Klancher Merchant, PhD, a historian of science, technology, and medicine and the 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.  Find the show notes for episode 15 here.  Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.

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. Find the show notes for episode 14 here.  Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.

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.  This episode is brought to you by The Tell Me Project, a story archive and a listening project where we host conversations with people about the meaning of genetic information in their lives. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.  

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. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.

Part of Genetic Frontiers' focus on 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." Read full transcript of this episode here. Follow Genetic Frontiers on your favorite podcast app, leave us a review, and connect with Genetic Frontiers on LinkedIn or Substack to join the converation.