Big Data and privacy: Who should manage information about me?

We’re in the Data Age. Everything is suddenly digitally quantifiable and that raises profound questions about privacy, what we can know about ourselves and what others can know about us. The very idea of information’s discovery, ownership and use is undergoing fundamental change in a world of suddenly archaic laws and government structures.

Here are two definitive examples from this week’s news:

The NSA can know where you are

Just yesterday, it was disclosed that the NSA is constantly tracking the location of every cell phone they can discover, anywhere in the world. Terabytes of data every day that allows current and backward-looking analysis of human relationships defined by proximity. That is incredibly powerful information that certainly can be used for good or bad purposes. It appears this information is fair game for collection and use and could be used to breakup legitimate citizen protests as easily as tracking a crime.

The FDA can keep you from knowing your genetic code

If you’ve followed the FDA vs. the genetic testing company 23andMe, genetic tests are classified by the government as a medical device, the same category as a pacemaker or heart valve, or anything that, “…is used to diagnose, prevent or treat disease or other conditions…” That classification effectively means the government regulates what we can know about ourselves — our own data.

This matters to me. My husband and I both took the “spit test” for 23andMe last Spring. For me, it was an amazing opportunity. You see, I was adopted from South Korea and I have no idea about my birth family. I don’t know if they were tall or short, thin or heavy, but more importantly, I had no idea if I was a carrier of a genetic condition that would affect my newly born daughter. I can’t tell you how many times I’ve been asked by a physician whether a condition ran in my family, only to say, “I have no idea.” 23andMe changed that for me.

We need a new way to look at data

If you haven’t figured out where this is going, these two issues raise critical questions about data and government: Is knowing my genome — essential data about myself — something my government should regulate? Can the FDA keep my personal information out of my own hands? Can that same government can know my location every moment of every day and keep that record forever?

Big Data brings amazing new things that can change our lives for the better, but someone had better start thinking through the implications of where that information can be collected, how it can be stored, who can use it, and how its use can be monitored. The world is reaching that crossroad right now.