Indu Subaiya, president of Catalyst @ Health 2.0 and senior advisor to HIMSS, speaks with Alice Rathjen, founder and chief executive officer of DNA Compass, a company dedicated to exploring genomic infrastructure and mapping for precision medicine. This organization leverages maps to provide entities with their own infrastructure for working with genetic data. Maps promote genomic literacy, automate diagnostics, and enable people to “meet up” at locations on the genome to accelerate treatment and cures.
In this episode of the Accelerate Health podcast, two healthcare entrepreneurs discuss everything from genomics, tracing COVID-19 variants using the Human Genome map, and the tech platforms needed to define what a digital human being truly is. Rathjen shares her passion for focusing on consumer empowerment in controlling data to guide decision-making. She explains current limitations in molecular diagnostics and why it has failed to serve our need for personal data access to optimize care.
“Our current state is tragic,” Rathjen said. “We’re in this pandemic and have a bunch of de-identified genomes that have been subsidized but worthless. We need a system where someone can walk into a doctor and know what mutations are on their genomes that might guide care, and what mutations on the virus they’re carrying could influence what’s transpired.”
She discussed the forces that have slowed innovation and the need to create access to dynamic data. Data security and privacy continue as factors in genomic data use and research. She touches on the need for better foundations for AI and machine learning, with the concept of a unique “digital human being” and a domain registration model that would include ongoing personal consent.
As a leading researcher in the field of genomic mapping, Rathjen explains how scientists at her organization are using a coordinate platform to completely map the locations of a person’s genes and mutations. In a mapping platform designed to share authoritative information in real time, this can be used to search for a specific gene and lead to further resources and data.
Rathjen discussed her empathy toward the need for interoperability, security and collaboration in this emerging field. She touches on current breakthroughs and opportunities and how to increase the number of genomes we can sequence, share and learn from.
Rathjen concludes with a call to action for policy makers to be patient advocates, striving for meaningful changes in legislation that shift control of human data away from purely academic pursuits. She calls for changes to address real health needs in communities around the world in a more just and sustainable manner.
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