One Woman's Quest to Cure Her Fatal Brain Disease

When Sonia Vallabh and Eric Minikel discovered that Sonia had inherited the gene for a fatal neurodegenerative disease, they quit their jobs to dedicate themselves to finding a treatment. President Obama believes that the American people may be able to help. It cost $400 million to sequence a person’s genome in 2003. Now, the cost has plummeted to around $1,000. These maps of all of the genes in our bodies are now easily and quickly attainable, along with enormous amounts of other medical data. The singular question of modern medicine is what to do with this data, and how to use it effectively, efficiently, democratically, and responsibly to improve human health.

In 2015, President Obama announced the Precision Medicine Initiative. Much of that is centered on using the droves of newly attainable information to better understand all the ways in which people and diseases are unique, and to deliver individualized diagnoses and treatments. The 2016 federal budget includes more than $200 million for the initiative. In this episode of If Our Bodies Could Talk, senior editor James Hamblin talks with the president about what to expect from this new approach to health–and with Vallabh and Minikel, who are racing against the clock in search of a cure.

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