Who Owns The Data Collected About You From Devices Inside Your Body?
from the this-time-it's-really-personal dept
People have started to wake up to the fact that companies like Google and Facebook hold huge quantities of data about their users. That raises questions about who owns what there, and to what extent users should be allowed access. Now Hugo Campos is asking the same question about a different kind of personal data ? that being collected by a cardiac defibrillator implanted in his chest:
“I have this complex little computer implanted in my body, but I have no access to it,” says Campos. “The best that patients can do is get a printout of the report given to the doctor, and that’s designed for doctors, not patients. Patients are left in the dark.”
As the open data movement has shown, the great thing about releasing raw datasets is that it enables people to come up with new and unexpected uses for them. It seems likely that providing access to the data stream from implanted devices would similarly allow all kinds of innovation in the field of digital personalized medicine, which is currently developing rapidly.
That’s likely to become more of an issue as the computing power of implanted devices increases, the data becomes richer, and as people start to monitor and even control aspects of their health through software running on smartphones, say. Naturally, they — and the coders writing apps — will want full access to the data pouring out of any equipment connected to them or inside them.
As Campos asks:
“Who owns the data collected in my body?” he says. “Should it benefit the company, so they can use it for post-market surveillance? Or me, so that I can make better decisions about my health?”
It’s the same kind of question that people are increasingly asking about Google and Facebook, but this time it might literally be a matter of life or death.