This is a good read on a topic I have been looking at very closely – which personal information can be used online for what purpose, by whom, and when – and what are the unintended consequences of exponential technologies that make everything so much more efficient, transparent and omniscient?
The 42-year-old information technology worker’s name recently showed up in a database of millions of people with “diabetes interest” sold by Acxiom Corp. (ACXM), one of the world’s biggest data brokers. One buyer, data reseller Exact Data, posted Abate’s name and address online, along with 100 others, under the header Sample Diabetes Mailing List. It’s just one of hundreds of medical databases up for sale to marketers. ..People would be shocked if they knew they were on some of these lists,” said Pam Dixon, president of the non-profit advocacy group World Privacy Forum, who has testified before Congress on the data broker industry. “Yet millions are.” They’re showing up in directories with names like “Suffering Seniors” or “Aching and Ailing,” according to a Bloomberg review of this little-known corner of the data mining industry. Other lists are categorized by diagnosis, including groupings of 2.3 million cancer patients, 14 million depression sufferers and 600,000 homes where a child or other member of the household has autism or attention deficit disorder. The lists typically sell for about 15 cents per name and can be broken down into sub-categories, like ethnicity, income level and geography for a few pennies more…
One of the more common ways to end up on a health list is by sharing health information on a mail or online survey, according to interviews with data brokers and the review of dozens of health-related lists. In some cases the surveys are tied to discounts or sweepstakes. Others are sent by a company seeking customer feedback after a purchase. The information is then sold to data brokers who repackage and resell it. Epsilon, which has data on 54 million households based on information gathered from its Shopper’s Voice survey, has lists containing information on 447,000 households in which someone has Alzheimer’s, 146,000 with Parkinson’s disease, and 41,000 with Lou Gehrig’s disease. The Irving, Texas-based company provides survey respondents with coupons and a chance to win $10,000 in exchange for information on their household’s spending habits and health. The company will share with individual consumers specific information it has gathered, said Jeanette Fitzgerald, Epsilon’s chief privacy officer.
Did You Know You Had Diabetes? It's All Over the Internet – Bloomberg