Recently Robert Scoble disclosed on FriendFeed that he has a rare kidney disease. It is an inherited disease, his father had it, and can be managed to being a chronic nuisance by changing diet. Interestingly, what the post did prompt was a further discussion on why privacy is dead. Working for a health insurance company we have all sorts of privacy issues, mostly governed by just plain ethical common sense, but also specifically enumerated through HIPAA and the Patient Safety Act. These are important pieces of legislation, but I wonder what will happen as a generation of people who view privacy differently. Think about how Facebook, Twitter and many other social networks have made what were usually, private exchanges to be public. Think about how people are ready and willing to trade their own privacy for group support and the wisdom of crowds? Individual choice of disclosure is at the heart of privacy (full disclosure I am a member of the ACLU ). However, I’m with Scoble in thinking that many people are going to choose to go public with their health because it is just the way the operate in every other part of their lives. These sorts of disclosures and the questions they raise can only be helped by having prominent people (yeah, so Scoble is only prominent in nerd town, but that’s a pretty big place these days) jump in the deep end and start paddling.
Scoble is not alone either. Steven Pinker seems to be taking it to the extreme by making his own genome public. Nick Jonas of Jonas Brothers fame has disclosed his being diabetic.
I’m reminded of the Reason Magazine cover for June 2004. For each subscriber a custom cover was printed that pictured a satellite photo with their house, school, institution or whatever circled. Maybe a little spooky, but the message was clear.
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