“I Want to Know What Code Is Running Inside My Body”

K McGowan | Backchannel | February 11, 2016

Marie Moe is a cyborg who runs on proprietary software she can’t trust. She’d like to change that.

At age 33, Marie Moe learned that her heart might fail her at any moment. A computer security expert in Norway, she found out she has a fairly common heart condition that disrupts her normal pulse, so she had to get a pacemaker. The surgery was quick and uncomplicated. Just a few weeks later she was able to travel to London for a course on ethical hacking.

She felt fine, until she was climbing the stairs in Covent Garden, one of the deepest stations in the London Underground. Suddenly, something went very wrong with her heart. “I felt like I was going to die,” she says. “It was a horrible feeling. I had no breath left, I didn’t know what was happening.” Back in Norway, it took her cardiac technicians months to figure out what had happened: The heart rate limits on her pacemaker had been set incorrectly, so that as she exerted herself, the pacemaker’s default safety mode switched on, cutting her heart rate instantaneously from 160 beats per minute to 80.

Why did that happen, and why did it take so long to figure it out? She’s not quite sure, but she obtained her own medical records and saw notes suggesting that the programming device the technicians used to interrogate her pacemaker either had a faulty user interface or a software bug...