Everyone with an Internet connection can see that Jen Lowe’s blood is pumping at a rate of 79 beats per minute, and that she has an estimated 16,438 days left to live. She’s already lived 13,208 days, so that means she’s still got more than half a lifetime to go.
Lowe recently made her One Human Heartbeat website, which consists of one pulsing red beacon and those simple statistics, public. The data scientist, who teaches at New York University’s Interactive Telecommunications Program (ITP), researches at Columbia University’s Spatial Information Design Lab, and co-founded the School for Poetic Computation, uploads this information from her wearable Basic fitness monitor twice a day.
So what does it mean? And to whom? Those two questions are sort of the point. On one level, Lowe was simply curious about how her pulse might relate to certain habits. On another, the project also engages the ethics of collecting this sort of information about people in the first place.
“As soon as I started looking into tracking my heart rate, checking my cortisol levels, getting an EKG, it became clear that it’s actually very hard to get access to data about one’s own body,” Lowe writes by e-mail. “Corporations data mine our aggregate and individual behavior–every click, every credit card purchase–to better market to us, but I can’t order a lab test of my cortisol levels because I live in New York state [where only doctors can order lab tests].”
In fact, Lowe adds, the only reason she was able to gain access to her Basic watch’s data was because she had “coding skills.” Otherwise, that information is stuck behind the Basic interface. Without an open API, she used a version of this code.
New advances in the processing of huge amounts of information should mean that Lowe is better able to gain knowledge about herself. That’s usually one of the most appealing selling points of each Big Data pitch. Yet those advances are also limited in certain ways. Just look what happened to 23andMe, which was providing a $99 DNA test to customers until federal regulators put brakes on the operation for fear that the company might mislead its users.
While we look for different ways to access our own data, whether it be in the form of wearables or different mobile apps, we also might not have control of how that information is being used. Lowe takes issue with the fact that a lot of conversations about those ethical standards are limited to the academy, or other silos of privilege. By posting her heartbeat online, Lowe feels she’s taking ownership of her information in a small, but hopefully significant, way.
“I’m lucky that the Internet gives me the power to make some little thing that’s different from the rest. If we’re going to talk about alternative models of how we might interact with our data, it helps to have examples,” she writes. “I’m really motivated by getting people to question what data we record, and who records it, and why.”