Out today in MIT Technology Review an article that showcases the advance of genomic data collection using social media apps to build sample sizes for large scale studies as well as recruit individuals with specific profiles for focused studies. The advantage is that the individual discloses information..
“Silicon Valley companies are intent on using apps and mobile devices to overrun what Friend has called the “medical-industrial complex.” The problem is that hospitals and research groups are notorious for hoarding data, in many cases because they are legally bound to do so by state and federal privacy regulations. But no law stops individuals from sharing information about themselves. Thus one reason to “empower patients,” as rhetoric has it, is that if people collect their own data, or are given control of it, it could quickly find wide use in consumer apps and technologies, as well as in science.”