Chapter 5 and 6 were a great way to conclude Self-Tracking by Neff and Nafus. The authors discussed the implications that self-tracking has and how some people who use various forms of self-tracking for medical purposes are denied their right to their own data. I couldn't believe this and the story of Hugo Campos resonated with me, so I wanted to do a little more research.
Campos wears a heart defibrillator to monitor his cardiovascular muscles. He never had a problem with the machine or the company that created it, until he wanted to see his data to have more control over stress induced activities during his daily life. The company denied him access, and legally had control over all the data that was produced from his body and transmitted to the little machine. The company said that it would be 'too difficult to understand.'
After a little of research I came across a Morning Edition article and clip from NPR. They discussed exactly what the book did in reference to Campos, but gave a little more explanation and insight into who Campos is and why he is seeking the data. For him, he believes that any data that comes from his body should be his, and rightfully so.
NPR wrote that there is hope in the future, and Campos is working hard to receive his data. After two years of hard work and dedication to his rights, Medtronic is working on a way to give him his data back.
You can find the full article here.
Do you agree with Campos, that all patients should have the right to receive data that comes from the devices they wear or are planted in their bodies?
If the data is readily available to patients, could there be implications to the access?
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