CODED: Genetics

What happens when scientific discoveries collide with sensationalist headlines? When Japanese scientists published research showing they could remove the extra copy of chromosome 21 in isolated skin cells, media outlets quickly proclaimed: "Could Down syndrome be eliminated?" These dramatic claims not only misrepresented the actual science but sparked legitimate concern among people with Down syndrome and their families. Dr. Nicole White, principal investigator for Down Syndrome Achieves, an...

Think billing for genetic counseling services is just about paperwork and numbers? Think again. In this eye-opening episode, we pull back the curtain on one of the most critical yet overlooked challenges facing genetic counselors today—getting fairly paid for their expertise. Joined by billing expert Brian Reyes, MS, CGC from UT Southwestern Medical Center (speaking in his personal capacity), we dive into the perfect storm of obstacles preventing genetic counselors from being properly recogn...

The House just passed what President Trump calls the "Big Beautiful Bill," and its implications could be devastating for millions of Americans who depend on Medicare and Medicaid. As this massive budget reconciliation bill heads to the Senate, Katie and Stephanie break down how its complex provisions could trigger automatic cuts to these essential programs despite promises to protect them. For people with disabilities, the stakes couldn't be higher. Many Americans don't realize that crucial ...

When 23andMe announced its bankruptcy filing in early 2024, it wasn't just the end of a once-promising business – it raised profound questions about the future of millions of Americans' genetic data and the direct-to-consumer testing industry itself. In this deep dive, we're joined by genetic counselor Austin McKittrick to unpack what happened to this genetic testing giant that went from a $6 billion valuation to bankruptcy. We trace 23andMe's journey from its 2006 founding through its regul...

Today, Katie and Stephanie celebrate World Down Syndrome Day by interviewing Stephanie's son, Andy, and his support staff, Will, about what life is like for people with Down syndrome and how support staff help people with disabilities to access the world and meaningfully engage with their communities. Find out what they do on normal days, who they serve, and what they think is important for you to know about Down syndrome. Please consider making a donation to the Genetic Support Foundation to...

Join us as we explore the vital role Medicaid plays for individuals with disabilities and genetic conditions in our latest podcast episode. With heartfelt stories from families navigating the complexities of disability support, we dive into the importance of advocacy. This episode features insights from seasoned advocates and personal anecdotes that highlight how Medicaid is more than just insurance; it is a lifeline that ensures essential services are accessible to people with disabilities. ...

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 Prena...