Million-Dollar Question: Who Owns Your Genetic Data?

dnaThe 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."

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3 Comments

  • Cijal Raj

    The DNA is the most unique identifier out there. It is also a reasonably good 'predictor' of how your body might change or even how your are predisposed to think.

    Therefore it is infinitely valuable to multiple corporations (Marketers, Insurance Companies, Healthcare Providers etc.) who can (and probably will) use that information against you. Until we can reasonably come to terms with developments in this field in the form of awareness of benefits/risks and sufficient regulations, this is very dangerous information that should be kept locked down.

  • Jack Repenning

    Descendant generations have to live with a vast array of my decisions; their stake in the privacy of my DNA breaks relatively little new ground. But I'm a bit concerned that you don't ask about my stake in the dissemination of my DNA among contemporary researchers, practitioners, and marketers. It's similarly worrisome that you pose the question "what rights does the DNA providing human have (or, should they be denied)," yet not "what restrictions ought the information holders obey?"

  • Barry Dennis

    Our DNA is our "personal" property and unique to us. In all the elements of privacy, DNA may be paramount, since there is no more unique expression.
    As individuals we have an obligation to safeguard our DNA.