The Data Map : a map of information flows

One of the things Latanya Sweeney mentioned during her talk at the iDash workshop is a new project called theDataMap, which is trying to visualize how personal information about individuals flows through institutions. One of the starting points is an older map which shows how a putative hospital patient Alice’s personal information is accessed and used by a number of entities of whom she is likely unaware, including pharma companies, her employer, and medical researchers.

This is analogous to a map Lee Tien sent me, also from a report a few years ago, on how private medical information flows look in California.

It’s worth looking at and thinking a bit about how we balance privacy and utility/profit at the moment, and whether generally erring on the side of sharing is the best way to go.