Million-Dollar Question: Who Owns Your Genetic Data?


The possible benefits of body computing–the use of implanted, digested, or wearable devices that transmit health data–are almost as numerous as the number of tech gizmos the concept has spawned. There’s Nike Plus and next-gen pedometers, smart pills and smart bandages, iPhone apps, and intricate pacemakers.

What’s clear is that it all adds up to better care through more long-term data and observation, quicker observations over larger populations, and increased therapy development for less-common disorders. But the fundamental shift that comes with body computing, says Dr. Leslie Saxon, cofounder of the Body Computing Conference, is “dignifying the patient by allowing them access in a connected world.”

But does access equal ownership?

That’s the burning question in the health-care space. Most consumers would take a “my body, my data” stance. But there’s no quick answer, just long-term repercussions, says Brian Fitzgerald of the FDA. “These are very durable, intractable problems,” he told the group of engineers, medical professionals, and designers gathered at this third annual conference. “If I share data with you because we’re playing a game, years later that data could be used against me. Where does my privacy end?”

The perfect pause-inducing example? A personal genetic test. “Do I have the right to share a personal genetic profile?” he asked the group gathered at this third annual conference. “That profile doesn’t just affect me. It affects future generations–they didn’t give me the right to share that profile with you. It’s necessary to rethink the very fundamental models of what we do and try to calibrate for the 21st century technologies.”

Does that mean the FDA could one day regulate our ability to share our personal genetic data, one nervous attendee asked. “No,” Fitzgerald replied. “We still live in a democracy.”KR