See the full article in the New York Times at: When the Privacy Button is Already Pressed
There is no “DO NOT TRACK” button in HIPAA. What happens when the public finds out they have no button to control the use and sale of intimate information about their minds and bodies?
This story shows the public is waking up to privacy:
* 11% of Mozilla users have turned ‘Do Not Track’ on.
* 18% of those with Firefox on Android phone use ‘Do Not Track’.
From sexual preferences, to records of child abuse, to DNA, to prescription records—–HIPAA and electronic systems eliminate our control over personal health information. Others decide when to use, disclose, or sell it. There is no “chain of custody” for personal health data. We can’t find out who collects and uses our health data. We can’t read a ‘data map’ and see where our health data flows. There is no health data map. See ABC World News story about the sale of health data: http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986&singlePage=true#.UFKTXVHUF-Y
The first step to fix any problem is to KNOW about it. Then we have to demand that law makers fix this disaster. Health information should not be used to make hidden decisions about our jobs, reputations, or credit.
Health technology can provide enormous benefits—but systems have to be re-designed so we control who sees and uses our health records. The best way to prevent harm is keep health data out of the hands of hidden users. Anyone who wants to use our health records should have to ask.