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 regulatory battles with the FDA and examine the complex privacy issues surrounding genetic data ownership when companies fail or change hands.

Austin shares his personal experience using 23andMe, offering an insider perspective on both the benefits and limitations of these tests. We discuss troubling scenarios where incomplete genetic testing can create a dangerous false sense of security, particularly with tests like the limited BRCA variant panel that misses the vast majority of clinically significant mutations.

The conversation explores the broader implications for consumers: How might life insurance companies access and use genetic information? What happens when scientific findings based on customer data are commercialized in potentially discriminatory ways? And most importantly, what guardrails should exist to protect people's genetic information?

Whether you're one of the 15 million people who've used 23andMe or you're simply curious about the privacy implications of our increasingly genetic future, this episode provides critical context for understanding how your most personal data might be used. Connect with a genetic counselor if you've taken a direct-to-consumer test and have questions about the completeness of your results or what they might mean for your health.

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

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

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 keep supporting this podcast and our organization that provides free resources about Down syndrome and other genetic conditions to new and expectant parent every day.

Resources:

Andy Meredith Photography

Coach Andy by Leana Conway

Lettercase National Center for Prenatal and Postnatal Resources

Lettercase Bookstore (20% off through May 24, 2025)

Down Syndrome Pregnancy

National Down Syndrome Society

National Down Syndrome Congress

MDSC National First Call Center

Ruby's Rainbow

Jack's Basket

Rising Kites

The Lucky Few Podcast

Parallels in Time: A History of Developmental Disabilities

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

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