In Healthcare, There’s No Back Door Out of Data
Weekly Article
March 19, 2015
Trading our data for online services has become the primary driver of the digital economy. Many of us are comforted by the seemingly voluntary nature of this exchange—satisfied that we could opt out of these services if it really came down to it. We use Facebook and Gmail voluntarily, after all. Life could go on without them. Whatever our qualms with Facebook’s latest privacy policy, at least we know we signed up for it.
Opting out comes with an alluring sensibility: If you don’t like it, don’t use it—whatever it is. But the proliferation of consumer medical devices is changing the landscape. Today’s companies aren’t just mining our contact lists, calendars, and search histories anymore: They’re checking our blood pressure and heart rate, tracking our diet and exercise habits, and even digging into our genetic heritage—all things once reserved for the privileged relationship between doctor and patient.
We may have become comfortable with sharing our personal information, but these data are different, and the information they reveal about us may be extremely valuable—and dangerous. Companies won’t just be mining our data to determine if we’re in the market for a new car, but a new kidney. They’ll be hunting for the most lucrative kind of customer: the desperate.
And it won’t just be the device manufacturers themselves who will have access to these insights. These data can be leaked in unexpected ways. Merely trying to interpret your own health data, say by typing “blood glucose 154 mg/dl” or “BRCA1” into a search engine or email, can put you at risk.
And that’s the problem. Opting out may no longer be a choice between privacy and convenience, but a choice between privacy and living long enough to know one’s grandchildren. That is no choice at all. Opting out is not an option.
This isn’t a hypothetical. Medtronic now collects heartbeat data from more than 1 million customers, retrieved through pacemakers and implanted defibrillators. That data, as the Wall Street Journal investigated, is extremely difficult for customers to even view, let alone control who has access to it.
The WSJ quoted a senior Medtronic executive Ken Riff as saying data was “the currency of the future.”
It’s entirely likely that having our genomes sequenced and our blood-glucose levels constantly monitored will become the norm.
Today, it may be only the sick who are forced into this bargain. Tomorrow, it may be all of us. It’s entirely likely that having our genomes sequenced and our blood-glucose levels constantly monitored will become the norm. One day soon it may be considered ignorant and irresponsible not to be constantly monitoring your child’s health data, much as it is with opting out of vaccines today. Many parents already purchase smartphones for their children so that they can remain in constant contact (and track them in real time, if the need arises).
The ever-rising costs of nonparticipation make clear the need to rethink our approach to consumer privacy. We need to build a relationship with our technology that isn’t reduced to a buyer-beware, take-it-or-leave-it mentality. Instead of asking how we can opt out, let’s ask how we can collectively opt in to systems we can trust to preserve our privacy.
This article first appeared on Future Tense, a partnership of Slate, New America, and Arizona State University.