But those that hold our data are largely faceless. Do we feel the same loss of “privacy”, if the other is a stranger?
It becomes facile to draw on the word “privacy” to forward argument. When health data is breached, it is framed as a “privacy breach” – and the gravity of it is emphasized to us by the high value these records have in black markets. But what do the individuals in this data experience as a result? Is it anything like the personal privacy breaches I just described? These records have value because they are used for fraud. The consequence for individuals is unclear. Perhaps it is “identity theft”. Is “identity theft” a “privacy” issue? To me, the word seems stretched.
I think there is an older concept and more accurate word than “privacy” to describe our discomfort: Power.
Our data holds power. Who has it? How can they use it? How will they use it? Are there accidents of power, and unintended consequences?
Photo by Bernard Spragg on Flickr
It is 2017 and the four largest companies in the world, by market cap, are digital. Our lives are defined by their products. We are entangled, enmeshed, and entrapped. Our personal data is integral to the experiences they give us. It is used to optimize, to personalize, to bring us more quickly to the solutions we need. It gives us unprecedented convenience. It is a powerful tool.
This power can turn in less benign directions. The algorithms that automate tasks may go awry. Without supervision, we fear unintended side-effects and algorithmic discrimination. Data can also be used more deliberately, more coldly, to steer our spending and personalize the prices of products we seek to purchase.
We seek to regain control. And so we call for data “ownership”.
Photo by Pabak Sarkar on Flickr (CC BY 2.0)
“Ownership” is another word which has more emotional power than clarity. Using language developed in reference to physical objects invites us to fallacious reasoning. It tempts us to imagine data as a singular object that can be moved or destroyed. But it is trivially copied, refracted and recombined.
We should set aside these words, and speak of power. For our data, we seek two complementary things: we seek to control what others do, and we seek to empower ourselves.
Control is likely to require regulation. If and when we take legal actions, I hope these are guided not by fear, but by understanding. Reflexive regulation to prevent imagined consequences can cause more harm than good. But if we can quantify the costs and benefits of control then we become justified in action.
My own work explores empowering ourselves. I’m unclear what value it will have! Our ability to aggregate our own data – and use it – is yet to be explored. But I hope, in Open Humans, we more fully access the potential of our personal data, and discover a new power for ourselves.
Thanks to Andrew Rens, Achal Prabhala, Steve Song, Bastian Greshake Tzovaras, and Astra Taylor for related discussion.