Introduction

Genetics is reshaping healthcare and society faster than ever—but what does it really mean for professionals, individuals, families, and communities? Coded dives into the biggest questions at the intersection of genetics, healthcare policy, bioethics, and disability rights.

Join hosts Katie Stoll, MS, CGC, genetic counselor and Executive Director of Genetic Support Foundation (GSF), and Dr. Stephanie Meredith, GSF Development Director and Supervisor of the Lettercase National Center for Prenatal and Postnatal Resources, as they unpack emerging genetic technologies, ethical dilemmas, and lived experiences. From heritable genome editing to the realities of genetic testing, no topic is off-limits.

Whether you're a healthcare professional, policymaker, disability advocate, or just curious about how genetics is changing the world, join us as we explore these ethics in genetics.

Subscribe to Coded now—wherever you get your podcasts!

Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/

Transcript

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Intro

• Katie:  Greetings!  We are thrilled to announce that Genetic Support Foundation is kicking off a new podcast - Coded.  I am Katie Stoll 
• Stephanie: And I’m Stephanie Meredith and we will be your hosts for this podcast which will provide an in-depth exploration of the most pressing issues at the intersection of genetics, healthcare policy, and bioethics. 
• Give some personal background:
  • Stephanie: Doctor of Public Health with a focus on disability and health
  • Author of books about various genetic conditions and research about genetic diagnosis experiences
  • Also authored the National Council on Disability report on Heritable Human Genome Editing
  • Mom of a 25-year-old with Down syndrome and two younger daughters
  • Katie: I am a genetic counselor and executive director of Genetic Support Foundation - I have worked in this area for more than 20 years in multiple clinical areas
• Katie or Stephanie: we have been working together for over a decade and talking about these issues in the area of genetics. Information regarding genetics and health and its implications are developing faster than ever and we want to think about these issues and consider the implications of new technologies and changes in policies for society. 

Overview:

• Katie: In the coming months we will cover a myriad of topics related to the field of clinical genetics and provide important social and historical context to help make sense of where we are and where we might be going. We will discuss new and emerging genetic testing technologies and practices as well as emerging therapies for genetic conditions
• Stephanie: We will talk about disability rights and why it is crucial to center the lived experiences of people with disabilities when considering new testing technologies, treatments and health policy. Through conversations with experts in the field as well as individuals with lived experience with genetic conditions, we'll unpack complex issues happening in the field of genetics.  
  • Have you ever wondered about what heritable human genome editing is and whether it’s safe and how it might impact future generations? Have you ever been worried about ethics in genetics and assumptions made about the lives of people with different genetic conditions like Down syndrome and hereditary Deafness?
• Katie: 
  • Have you wondered about the quality of information from at-home genetic testing and are you interested in hearing more about the time that a lab couldn’t tell the difference between my kid and my dog? 
  • Or are you curious about how conflicts of interests might affect the type of information you receive about genetic testing?
  • This is what we’re here to explore with you and expert guests–our friends in the fields of genetics, bioethics, medicine, and disability advocacy. We hope this podcast is of interest to healthcare professionals, policy makers, disability advocates, patients, and anyone interested in understanding how advances in genetic medicine are reshaping healthcare delivery and society at large.

Outro

• We will be kicking off our first episode this week, with an overview of Medicaid and what it means for people with genetic conditions and disability. So please stay tuned for our first episode and find us wherever you find your podcasts. We invite you to subscribe and share, the podcast and leave us a comment about topics you would like to see highlighted!
• Thank you for listening and the same sign off.