Why you really should share your medical data

May 29, 2014 /

A lot of people are advocating for citizen sciencepooling medical datacrowdsourcing medical history — you know, de-siloing traditionally isolated institutions and disciplines and leveling the playing field of communication between doctor and patient.

But there’s a much more interesting reason to share your medical data that has nothing to do with transparency or taking control of your medical information. Don’t get me wrong, those are interesting and important, sure, but I’m sure I’m not alone in suspecting that I have about as much chance of getting to grips with my own medical data as my eight-year-old nephew does of fixing my iPhone.

No. Becoming a master of your medical destiny is not the reason to share your medical data. For that, take a look at Stephen Friend‘s new venture, The Resilience Project. This collaboration between Sage Bionetworks and Mount Sinai “is looking for healthy individuals who carry genetic mutations that should have made them ill as children.” It turns out that some people — 1 in 15000 — are in some way “resilient” to catastrophic diseases to which they’re genetically predisposed. Finding and analyzing these outliers to figure out what makes them different could in turn help doctors to develop cures for all. In this instance, the goal isn’t selfish, it’s science. And that’s a cause we can all swab for.

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Image of Dendritic cell courtesy National Institutes of Health (NIH).