Sick Grandparents For Sale By Data Miners At 15 Cents A Name

Senators’ Attention

Rockefeller and U.S. Senator Edward Markey, a Democrat from Massachusetts, introduced legislation in February that would allow consumers to see what information has been collected on them and make it easier to opt out of being included on such lists. In May, the Federal Trade Commission recommended Congress put more protections around the collection of health and other sensitive information to ensure consumers know how the details they are sharing are going to be used.

The companies selling the data say it’s secure and contains only information from consumers who want it shared with marketers so they can learn more about their condition. The data broker trade group, the Direct Marketing Association, said it has its own set of mandatory guidelines to ensure the data is ethically collected and used. It also has a website to allow consumers to opt out of receiving marketing material.

“We have very strong self regulation, we have for more than 40 years,” said Rachel Nyswander Thomas, vice president for government affairs for the DMA. “Regardless of how the practices are evolving, the self-regulation is as strong as ever.”

Yet the ease with which data is discoverable in a simple Google search along with Bloomberg interviews with people who showed up in one such database suggest the process isn’t always secure or transparent.

Open Access

Dan Abate said he never agreed to be included in any list related to diabetes. Two other people on the same mailing list said they didn’t have diabetes either and weren’t aware of consenting to offer their information.

In Abate’s case, neither he nor anyone in his family or household has diabetes and the only connection he can think of for landing on the list are a few cycling events he participated in for a group that raises money for the disease.

“I could understand if I was voluntarily putting this medical information out there,” Abate said. “But I don’t have diabetes, and I don’t want my information out there to be sold.”

Bloomberg found the diabetes mailing list on the website of Exact Data in a section for sample lists that included dozens of other categories, like gamblers and pregnant women. The diabetes list contained 100 names, addresses and e-mails. Bloomberg sent e-mails to all of them, and three consented to interviews. There were no restrictions on who could access the list, available on search engines like Google.

Online Surveys

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.