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Camille Nebeker: And another that my colleague, Eleanor wrote entitled the Rise of the New Bio-Citizen speaks to the need for governance and safety considerations when doing DIY research.

"I started Crohnology because after living for Crohn's for 14 years, I realized that the data that I was gathering outside the doctor's office was just as important as, if not more than, what I was learning inside. Since my diagnosis at age 12, I have had a dozen major flare ups of the disease. I found that, for me, diets and supplements, stress reduction and mental relaxation, and exercise help. I heard many people on the internet claim that they had found the magic bullet, but I thought it was irresponsible to be so confident. Just because these things worked for me, I wasn't about to claim that they work for everybody. Instead, I decided to build a patient-powered research network that would allow patients everywhere to be contributing their own treatment experimentation in a way that could be aggregated for us to learn what actually works for whom. - Sean Ahrens"