The Wall Street Journal continues its in-depth report, “What They Know,” about the state of surveillance in the United States and how these surveillance programs affect individual privacy. In the latest installment, the Journal takes a look at companies that gather data by “scraping” or copying Web sites, including private online forums such as PatientsLikeMe, where people discuss their medical problems:
PatientsLikeMe managed to block and identify the intruder: Nielsen Co., the privately held New York media-research firm. Nielsen monitors online “buzz” for clients, including major drug makers, which buy data gleaned from the Web to get insight from consumers about their products, Nielsen says.
“I felt totally violated,” says Bilal Ahmed, a 33-year-old resident of Sydney, Australia, who used PatientsLikeMe to connect with other people suffering from depression. […]
After PatientsLikeMe told users about the break-in, Mr. Ahmed deleted all his posts, plus a list of drugs he uses. “It was very disturbing to know that your information is being sold,” he says. Nielsen says it no longer scrapes sites requiring an individual account for access, unless it has permission.
The market for personal data about Internet users is booming, and in the vanguard is the practice of “scraping.” Firms offer to harvest online conversations and collect personal details from social-networking sites, résumé sites and online forums where people might discuss their lives. […]
Some companies collect personal information for detailed background reports on individuals, such as email addresses, cell numbers, photographs and posts on social-network sites.
Others offer what are known as listening services, which monitor in real time hundreds or thousands of news sources, blogs and websites to see what people are saying about specific products or topics. […]
Internet users often have little recourse if personally identifiable data is scraped: There is no national law requiring data companies to let people remove or change information about themselves, though some firms let users remove their profiles under certain circumstances.