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On a recent episode of The Genetics Podcast, Patrick Short speaks with Dr. Susan Liebman, a professor emerita and researcher, about her personal and professional journey in genetics. Dr. Liebman shares her deeply moving story of uncovering the genetic underpinnings of her family’s health tragedy—a sudden, fatal cardiac event that claimed the life of her niece—and how it inspired her to write her memoir, The Dressmaker’s Mirror. The conversation goes into detail on the role of genetics in health, the importance of early screening, and the human side of science.
From personal loss to genetic screening advocacy
Dr. Liebman recounts the sudden death of her 36-year-old niece, who was six months pregnant, due to undiagnosed dilated cardiomyopathy. The tragedy sparked an investigation into her family’s genetic history, leading to the discovery of a mutation in the FLNC gene linked to cardiomyopathy. As a geneticist, Dr. Liebman used her professional network and expertise to advocate for regular cardiac screenings for her family and urged them to seek genetic counseling and testing.
Her story highlights the challenges families face when navigating genetic uncertainty, such as understanding the concept of penetrance—the likelihood that a mutation will cause disease—and the role of informed decision-making in genetic testing. Dr. Liebman reflects on the emotional toll of these decisions, emphasizing that while knowledge can sometimes feel daunting, it ultimately empowers individuals to take control of their health.
The power of storytelling in science and advocacy
Central to Dr. Liebman’s journey is her belief in the transformative power of storytelling. Through her memoir, The Dressmaker’s Mirror, she marries science with a personal narrative to make genetics accessible to a wider audience. She shares that it was during the pandemic, amidst her genetic investigation, that she decided to write her book as a way to not only process her family’s experiences but also to inspire others to see the value of genetic screening.
Dr. Liebman sees storytelling as a way to connect the scientific and emotional aspects of genetic discovery. By sharing her family’s story of loss, resilience, and advocacy, she bridges the gap between the technical world of genomics and the very real human experiences that lie behind it. Her goal is to demystify the science and make it relatable, showing how genetic testing can provide clarity, hope, and life-changing opportunities for individuals and families.
“Storytelling,” she explains, “is about helping others see the human side of science. It’s not just about the data; it’s about the lives it touches.” Through her own story, she hopes to inspire others to take proactive steps to understand their genetic health.
The case for population-wide genetic screening
Dr. Liebman is a passionate advocate for expanding access to genetic screening, particularly for conditions that have actionable treatments. She notes that while the cost of sequencing has dropped dramatically, universal access to genetic testing is still a long way away. In the podcast, Dr. Liebman discusses the 81 genes currently recommended for reporting actionable findings, including FLNC, and emphasizes that early detection can save lives by enabling preventative care.
She draws parallels between genetic screening and routine health measures like blood pressure checks, arguing that knowledge of genetic risks allows individuals to take proactive steps without letting the fear of testing outcomes define their lives. “Genetic testing,” she says, “isn’t about changing the outcome—it’s about giving you a chance to live your life fully and with clarity.”
Yeast genetics and the foundations of her career
Reflecting on her academic career, Dr. Liebman shares how her foundational work in yeast genetics contributed to groundbreaking discoveries about prions—proteins linked to diseases like Alzheimer’s and amyotrophic lateral sclerosis (ALS). This research laid the foundation for understanding protein aggregation, a phenomenon central to many neurodegenerative diseases. Her career serves as a testament to how basic research can inform clinical discoveries, creating a bridge between the lab and real-world applications.
Lessons in resilience and advocacy
Beyond her scientific achievements, Dr. Liebman offers inspiring perspectives on resilience. She encourages individuals to pursue their passions, embrace life’s uncertainties, and celebrate small victories, whether in science or their personal life. Her father’s philosophy, “Do your best and leave the rest,” is what she uses as a guiding principle in her life, and she encourages others to do the same.
Her story is also a call to action for the scientific community: to combine technical advances with empathetic communication, ensuring that breakthroughs in genetics are accessible and meaningful to everyone.
Final thoughts
Dr. Liebman’s story is a testament to the power of combining science and storytelling to raise awareness, drive change, and inspire others. Her work shows the importance of genetic research not just for advancing medicine but also for bringing clarity and hope to families navigating health challenges.
