Up at 5AM: The 5AM Solutions Blog

This is not personalized medicine

Posted on Wed, Apr 21, 2010 @ 01:10 PM

Remarks by our CEO, Brent Gendleman, when he introduced a personalized medicine session at today's BIO-IT World Expo...

"10 fingers, 10 toes, that's all that used to matter. Not now. Now, only seconds old, the exact time and cause of my death was already known."

This is from a scene in the great film "Gattaca," which details the narrator's birth. A needle-pick in his heel yields blood for a genetic test, and the results appear instantly in a printout. While the mother cuddles the newborn, a nurse seriously reads out his fate: "Neurological condition, 60% probability. Manic depression, 42% probability. Attention defecit disorder, 89% probability. Heart disease..." (a serious look) "99% probability. Early fatal potential. Life expectancy: 30.2 years."

This is not personalized medicine.

When I think about personalized medicine, these important genetic tests are a key component. They provide my doctor with the ability to know me, and to know people like me. This helps us understand how my behavior impacts my health, and to identify the best medicines for me, and the medicines I should stay away from.

When I think about personalized medicine, I think about my doctor and me being able to take my information and share it with the research community – to serve research, me, and people like me.

Personalized medicine is not only about breaking down the silos we’ve been talking about today – between and among bioinformatics and standards and interoperability and health-it and massive data and researchers and clinicians. It’s about making our work personal.

You know, most of us do incredible work in our silos, and we know that one day we’ll be able to let information flow through from one “track” to another. We work with so many fabulous people at the NCI, developing solutions to help cure cancer. One of our partners, a researcher for whom we’re providing research software, was reporting his results to his contract officer. The contract officer asked if he was meeting his deadlines and deliverables, and he replied “No, we’re not on schedule. We’re trying to lengthen the survival curve for these people.” He said the contract officer was silent, and replied, “I’m sorry. You know, sometimes I forget that what we’re doing can have that kind of impact.”

Personalized medicine is about establishing a cohesive community, where we learn from each other, we take advantage of our respective strengths, to make informed choices and take care of people.

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