Your medical data: misappropriated by health-tech companies, off-limits to you

Backchannel's package on medical data and the health-tech industry profiles three people who were able to shake loose their own data and make real improvements in their lives with it: Marie Moe, who discovered that the reason she was having terrifying cardiac episodes was out-of-date firmware on her pacemaker; Steven Keating, who created a website with exquisitely detailed data on his brain tumor, including a gene-sequence that had to be run a second time because the first scan wasn't approved for "commercial" use, which included publishing it on his own site; and Annie Kuehl, whose advocacy eventually revealed the fact that doctors had suspected all along that her sick baby had a rare genetic disorder, which she only learned about after years of agonizing victim-blaming and terrifying seizures. (more…)