Morgan, your analysis of 23andMe highlights a fundamental tension in genomics businesses: centralized data aggregation creates initial value but struggles with sustainable monetization and trust preservation.
Your suggestion #6 (giving customers three clear options for their data) particularly resonates with my work. At CEtHI, we've been piloting a radically patient-centered approach with breast cancer patients, providing them complete ownership of their full exome tumor profiling data. Our early findings suggest this model creates stronger alignment between commercial incentives and patient trust.
The three case studies in your "Real-World Playbook" section all attempted to reconcile commercial value with privacy through increasingly complex legal and technical barriers. What if the solution isn't more sophisticated barriers but a fundamentally different ownership model?
I wonder if 23andMe's struggles reveal a market opportunity: could a business model built on true patient data ownership (rather than company-controlled data aggregation) create more sustainable value? Our pilot work suggests patients who truly own their data are more engaged, share more willingly for research, and remain active participants rather than one-time contributors. Furthermore, the opportunity to collect all pertinent patient level data that will allow for real inferences on drug development (including additional molecular data, behavioral data, environmental data, etc.) would be unparalleled.
I'd be curious about your thoughts on whether venture investors would value this different approach to genomic data, or if the industry remains committed to centralized data moats despite their apparent sustainability challenges.
Morgan, your analysis of 23andMe highlights a fundamental tension in genomics businesses: centralized data aggregation creates initial value but struggles with sustainable monetization and trust preservation.
Your suggestion #6 (giving customers three clear options for their data) particularly resonates with my work. At CEtHI, we've been piloting a radically patient-centered approach with breast cancer patients, providing them complete ownership of their full exome tumor profiling data. Our early findings suggest this model creates stronger alignment between commercial incentives and patient trust.
The three case studies in your "Real-World Playbook" section all attempted to reconcile commercial value with privacy through increasingly complex legal and technical barriers. What if the solution isn't more sophisticated barriers but a fundamentally different ownership model?
I wonder if 23andMe's struggles reveal a market opportunity: could a business model built on true patient data ownership (rather than company-controlled data aggregation) create more sustainable value? Our pilot work suggests patients who truly own their data are more engaged, share more willingly for research, and remain active participants rather than one-time contributors. Furthermore, the opportunity to collect all pertinent patient level data that will allow for real inferences on drug development (including additional molecular data, behavioral data, environmental data, etc.) would be unparalleled.
I'd be curious about your thoughts on whether venture investors would value this different approach to genomic data, or if the industry remains committed to centralized data moats despite their apparent sustainability challenges.