Exact Data’s Chief Executive Officer Larry Organ said the list posted on its website shouldn’t have included last names and street addresses, and the company has since deleted any identifiable information. He said the data came from Acxiom and Exact Data was reselling it.
The Acxiom list was compiled by various sources, including surveys, registrations, or summaries of retail purchases that indicated someone in the household has an interest in diabetes, said Ines Gutzmer, a spokeswoman for the Little Rock, Arkansas-based company. While Gutzmer said consumers can visit the Acxiom website to see some of the information that has been collected on them, she declined to comment about how any one individual was placed on the list.
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.
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