Robert Cole helped a friend learn about his diabetes. Cole, of Ferguson, Mo., searched online, printed out some articles from his computer and passed along the information.
About six weeks later, Cole began receiving advertisements in the mail and online for diabetes testing supplies.
He was alarmed by the connection.
Cole, 65, who has no history of the disease, launched into a personal investigation several years ago about who owns his identity and personal information and began evangelizing to his family and friends about the way individual data is mined and potentially used.
He’s not alone in worrying about how his digital moves are being tracked. New efforts are under way to help individuals regain some control of how their information is collected and shared. And new research suggests people are beginning to take steps to protect their privacy online and on cellphones.
Cole called the firm that mailed him brochures to find out how it obtained his name and address, but he was unable to get an answer. Eventually, he filed a complaint with the Privacy Rights Clearinghouse in San Diego and tried to contact the American Civil Liberties Union to find out who had the right to access and sell information about him.
“Am I in somebody’s database as a diabetic? Because I’m not. I don’t even know how to correct that,” he said. What if he applies for life insurance and is rejected based on a faulty profile? he asked. Could he be charged higher premiums or be denied credit because of what he types in his emails or in Google searches?
Laura McCarthy Jarman, 30, of St. Louis, said she noticed when she was planning her wedding in the spring that most of the ads she saw online were related to weddings.
“It was just so bizarre,” she said. “You feel like your computer is reading your mind.”
It made the time she spent online much more enjoyable, she said. While she was motivated by both convenience and privacy concerns, she said, she can appreciate why collecting the information is important to help businesses and can be useful for some consumers.
Cole has a more philosophical objection.
“I have an issue with how someone can sell my name without my acknowledgement or agreement,” Cole said. If someone is profiting from selling personal information about his behavior online, he wants a cut of it.
George Blake, a retired newspaper editor in Atlanta, is hoping to attract millions of consumers who share Cole’s logic. Last month, he launched two privacy-related websites based on what he believes is a pent-up public demand for taking back control of personal data.
One of his sites, Money For My Data, lets individuals sign up to allow companies to sell collected data and take periodic surveys about interests and future purchases. Individuals can decide which pieces of their consumer profile they want shared with companies interested in targeting them for ads, Blake explained. His company will package and sell the data or work with data accumulators on sales the users have permitted. His goal is to have individuals get a percentage of the profit from the sale when their name is included on such a list.
“Data is the new world currency,” he said. “People need to claim ownership of data in critical mass.” Blake believes that attaching a monetary value to an individual’s personal data will help bolster legal arguments protecting consumer privacy rights.
He’s also working on a registry to allow users to opt out of being tracked online, although an international body, the World Wide Web Consortium, also has been working on Do Not Track standards.
Microsoft said recently that Internet Explorer 10 will include the anti-tracking setting as a default, but the Apache Web server, which powers 60 percent of websites worldwide, responded by declaring it would ignore the Do Not Track request from all Internet Explorer 10 browsers because it was set as a default and not expressly chosen and set by a person.
Aleecia McDonald, a privacy researcher and fellow at the Center for Internet and Society at Stanford Law School, says her work on users’ understanding of digital behavior and privacy reveals a significant knowledge gap.
“They think they are protected by laws that don’t exist,” she said.