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Do You Know Where Your Data Are?

Posted on May 3, 2009 by Dissent

Bruce Schneier had a pointed article in the Wall Street Journal this week:

Do you know what your data did last night? Almost none of more than 27 million people who took the RealAge quiz realized that their personal health data was sold to drug companies, who in turned used that information for targeted e-mail marketing campaigns.

There’s a basic consumer protection principle at work here, and it’s the concept of “unfair and deceptive” trade practices. Basically, a company shouldn’t be able to say one thing and do another: sell used goods as new, lie on ingredients lists, advertise prices that aren’t generally available, claim features that don’t exist, and so on.

RealAge’s privacy policy doesn’t mention anything about selling data to drug companies, but buried in its 2,400 words, it does say that “we will share your personal data with third parties to fulfill the services that you have asked us to provide to you.” They maintain that when you join the website, you consent to receiving pharmaceutical company spam. But since that isn’t spelled out, it’s not really informed consent. That’s deceptive.

For years, patient advocacy organizations have been raising alarms about this type of problem. Bruce’s article is not confined to just healthcare-related deceptive practices. Hopefully, though, it will reach people who generally do not read patient advocacy press releases and blogs. You can read his entire article here.

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