The Genetics Podcast EP 217: Building a genomic passport for every family: Insights from tech leader and rare disease parent Lisa Gurry of GeneDx
Dec 11, 2025
Lisa Gurry, Chief Business Officer at GeneDx and former Microsoft exec who co-founded Truveta, brings tech and health-data chops. She discusses newborn genomic screening pilots and scaling rare disease diagnosis. She explains using large datasets, AI, and clinical teams for interpretation. She imagines a lifelong genomic passport to guide care and describes research and trial-ready patient identification.
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Newborn Screening Detects Missed Conditions
- Early newborn genomic screening finds actionable diagnoses that routine care would miss.
- In a 20,000-infant pilot 3.2% had positive findings and 92% of true positives wouldn't be found otherwise.
Pilot To Prove Value
- Prove clinical and economic value with scaled pilots before broad rollout.
- Use state and NIH-funded pilots to measure health impact and cost-savings for newborn genomic screening.
High Impact In The NICU
- Rapid genomic testing in NICUs can be highly cost-effective and clinically impactful.
- Seattle Children's found genomic testing in the NICU could save roughly $150,000 per patient per year.