Why Don't You Have the Right To Access Your Own Biometric Data?

The Citizen's Guide to the Future
Feb. 27 2012 3:16 PM

Why Don't You Have the Right To Access Your Own Biometric Data?

Hugo Campos didn’t even want an implantable cardiac defibrillator, a $30,000 device. But it turned out that the ICD is the best way to keep patients like him—those suffering from a disease called hypertrophic cardiomyopathy—out of sudden cardiac arrest. If the implant was necessary, he reasoned, he might as well get access to the data generated by the ICD, like heart rhythm.

But it turns out that patients can’t access information generated by implanted medical devices like the ICD. In a January TEDxCambridge talk (below), Campos explains that medical device manufacturers see doctors, not patients, as their customers; further, they think that sharing data with patients “does not fit their business model.” So even as the Quantified Self movement has taken off, the best sources for such data are out of reach for the patients who would most benefit. Campos, for instance, believes that having access to his data would allow him to better understand his condition and perhaps live a better, healthier life.

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In the new book The Creative Destruction of Medicine, Eric Topol echoes this sentiment by calling on patients to demand access to their own data.

Future Tense is a partnership of SlateNew America, and Arizona State University.

Torie Bosch is the editor of Future Tense, a project of Slate, the New America Foundation, and Arizona State that looks at the implications of new technologies.