Karen Sandler has a heart three sizes too big. Once you get past the Grinch jokes it isn't too hard to see how this might be a problem. Her heart is three times too thick -- and therefore too stiff to reliably function. She is susceptible to sudden death. She has a 2%-3% chance of dying every year.
The solution is an implantable cardioverter-defibrillator, which combines heart monitoring with defibrillation functionality. A crucial component of such a device is its software. The medical technology firms which make these devices will not release the software which runs them under Open Source licenses. They will not allow the patients whose lives hinge on the correctness of such software to examine the code.
Think of it: Scientists and doctors strive mightily to achieve an ever-greater, ever-more detailed understanding of the heart, its functions and its genetics so that they can spread this information widely in the world and thus improve heart health and heart safety. Medical knowledge helps more people the more freely it is available.
Medical electronics manufacturers, on the other hand, patent their devices and will not reveal the software underlying their function in an effort to keep the knowledge of such matters as narrow as feasible. Even such companies as Medtronics, which is regarded favorably by doctors because of its willingness to step in early and help extensively if problems arise will not share its code.
So Karen Sandler has an implanted medical device, on which her very life may someday depend and the company that makes that device has in place an elaborate legal mechanism to prevent her from understanding exactly how it works -- and how it might fail.
Luckily, Karen Sandler is a lawyer. Even more luckily, she works for the Software Freedom Law Center. Lucky for us, she is ready and willing to talk about the whole situation.