The onset of the Information Age means that anyone with a Wi-Fi connection is able to have access to vast amounts of data in an instant. How can it be that you are able to find the average temperature during a Siberian winter with a simple Google search, but uncovering information on one's own body turns into an obstacle course of restrictions? Corporations are able to find out data on what we like and hate, and how we think, all in an effort to better market us goods. In New York State, though, it’s difficult to even find out results from a simple blood test without help from a doctor due to the Clinical Laboratory Improvement Amendments. One New York-based researcher set out to regain a bit of control over her personal information with her One Human Heart website.
One Human Heart is a website that consists of one pulsing red light. This light is meant to represent its creator Jen Lowe’s heartbeat. Lowe is a data scientist at New York University’s Interactive Telecommunications Program. Along with a physical representation of Lowe’s heartbeat, the website also contains simple statistics on the scientist’s health. All of this is available to the public. Through a basic fitness monitor, Lowe is able to upload information about her current health statistics to the website twice a day, every day.
Although the project was partly created to satisfy Lowe’s curiosity on her own heath, it also highlights how difficult it is to get access to data about one’s own body. “Corporations data mine our aggregate and individual behavior—every click, every credit card purchase—to better market 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], Lowe explained to Fast Coexist. Lowe was only able to get the information out of her Basic watch’s data because she was able to crack its code.
Big data is a common catchphrase used in the business world to describe the continual growth and availability of data. Lowe’s project helped to show that even with growing deposit of information, this data is still not readily available to the everyday person. Most conversations on the ethics of information distribution only involve certain highly qualified indivisuals. This leaves out the opinions of everyday people.
In 2013, 23andMe attempted to provide the direct route between the public and information about their genetic makeup without having to go through a medical professional. The company was warned by the FDA, who feared they may mislead their users. This is further proof of how hard it is for the public to access information on their own bodies.
Lowe is motivated to begin her One Human Heart project to help get people questioning what data we record, who records it, and what it may be used for. “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,” Lowe said.