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    New York Times: When Your Data Wanders to Places You’ve Never Been

    The New York Times takes a look at the issue of marketers’ gathering personal data about individuals:

    A FEW weeks ago, a friend received a flier in the mail inviting her to an event in Manhattan for patients with multiple sclerosis. […]

    The thing is that my friend, who requested that I keep her name out of this column, does not have multiple sclerosis, an autoimmune disease that affects the central nervous system.

    But last year, she did search online for information about various diseases, including M.S., on a number of consumer health sites. She also subscribed to an online recommendation engine where she looked up consumer reviews of local physicians.

    Now she wondered whether one of those companies had erroneously profiled her as an M.S. patient and shared that profile with drug-company marketers. She worried about the potential ramifications: Could she, for instance, someday be denied life insurance on the basis of that profile?

    In our data-happy society, the case of the mistaken M.S. patient illustrates a lack of visibility for people interested in how information about them changes hands. When consumers fill out warranty cards, enter sweepstakes, answer online surveys, agree to online privacy policies or sign up to receive e-mails from brands, they often don’t realize that certain details — linked to them by name or by customer ID code — may be passed along to other companies. That can make it hard for people seeking to correct errors to find the keepers of their marketing profiles. […]

    Yet [Senator John D. Rockefeller IV (D-W.Va.)] acknowledges that this kind of privacy option for online consumers [Do Not Track], even if it eventually goes into effect, does not address a larger issue: the thousands of details that third-party data gatherers, who typically don’t interact directly with consumers, have already amassed about a majority of adults in the United States. For instance, there is no federal law that requires such companies to allow consumers to have access to and correct marketing data that’s been compiled about them. That is partly why the Senate committee opened an investigation last year into the practices of leading data brokers. […]

    So I decided — after asking permission from the friend who received the M.S. flier — to see if I could find out how erroneous information about her health status moved from one company to another. It wasn’t an obvious trajectory.

    Read the full article to learn more about the reporter’s investigation into how her friend was labeled an M.S. patient.

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