Quick post to this interesting NYT article, Practicing Patients, about PatientsLikeMe. The article covers some ground on some of the questions that periodically swirl in my brain regarding HIPAA, privacy rights, who is (should be) the steward of medical information, pro/cons of patients (consumers) self treatment, etc.
I particularly found interesting Alan Westin's taxonomy of Americans' attitudes toward privacy. The article states:
In 1990, Alan Westin, a political scientist at Columbia University and an expert in privacy issues, offered a useful taxonomy of Americans’ attitudes toward privacy. On one end of the spectrum were what he called privacy fundamentalists — the 25 percent of Americans who feel that their privacy is paramount and that no one, not the government or corporations or their family, should have access to their personal information without explicit permission. At the other end of the spectrum were the privacy-unconcerned — about 15 percent of Americans — who paid no mind to privacy issues and didn’t figure they had anything to hide. In the middle were the vast majority, the 60 percent whom Westin called privacy pragmatists: those who felt that they could give a company they trusted some information — birth date, ZIP code, telephone number — for particular benefits.