AIDS Patient and Rape Victim Information Sold to Marketing Firms

AIDS

AIDS patients, rape victims, erectile dysfunction sufferers and seniors suffering from dementia are on lists of consumer information being sold to marketing firms at a rate of 7.9 cents each, said the World Privacy Forum to Congress on Wednesday.  The group was on Capitol Hill to urge Congress to tighten up government regulations regarding the collection and sale of private information.

The lists were uncovered by The World Privacy Forum while they were investigating the way that consumer information is compiled and sold by data brokerages.  The data is sold to marketers so that they can better tailor their efforts to shoppers using data on clothing size to annual income.

In addition to the lists of AIDS and dementia patients and rape victims, lists were found that contained the names of people who were susceptible to alcohol and drug addictions, 30,000 police officers’ home addresses and mailing addresses for domestic violence shelters which by law are to be kept secret. One data brokerage company, MEDbase200, offered a list for sale online titled “Rape Sufferers List.”  The president of parent company Integrated Business Services, Inc. has said that his company never kept a list of actual rape victims and that the list online was a “hypothetical” file that had never been removed from the website after its launch. When a reporter asked about lists of alcoholics, erectile dysfunction sufferers and HIV/AIDS patients, there was no response.

According to the executive director of the World Privacy Forum, Pam Dixon, the fact that these lists exist is proof that tighter regulations are necessary.  Speaking at a Senate committee hearing on Wednesday, Dixon urged Congress to take action by working to bar the circulation of “unsafe, unfair and overall just deplorable” lists.  Expressing concern about what criminals could do with the information on these lists, Dixon offered the example that lists including police officers addresses could put them and their families in danger and that a list of seniors with dementia could be used to target them with financial scams.

The hearing on Wednesday was the culmination of a year-long Senate investigation into a data brokerage industry that makes $156 billion per year.  The chairman of the investigating committee, John “Jay” Rockefeller, vowed to continue pushing for information on how data brokers collect their data and to whom it is ultimately sold.  Rockefeller closed by saying that the lists containing AIDS patient and rape victim information among others “revolted” him and vowed to continue the commission’s investigation into their sale to marketing firms.

Under current law, data brokers must keep private its consumer data only in cases where it is needed for employment, housing, insurance or credit purposes.  Although doctors are prohibited from sharing their patients’ information, data brokers can acquire medical information legally from reports on the sale of health care items and over-the-counter drugs as well as other health care items.  Another method of gathering information is through online surveys that are filled out by people who believe they are receiving help from the website offering the survey.

The president of the Direct Marketing Association, Linda Woolley, released a statement defending such lists in which she noted that they comprise a “tiny minority” of marketing that is sold.  She acknowledged that the lists are used in some situations to harm certain groups and stated that the DMA is against the practice.  She also added that the names of some lists are misleading and that the majority of lists focus on hobbies and interests of the people listed.

Although there are data brokers that offer a way to opt out of being listed, in many cases the procedure to do so is unclear.  In addition, said Dixon, the majority of consumers do not know that they appear on lists to begin with.

As the practice of data brokers selling lists of information, such as the names of rape victims and AIDS/HIV patients, to marketing firms comes to light, not only the Senate is looking at ways to curtail the collection of sensitive data, but the Federal Trade Commission has also called on larger data brokerages to make their data collection practices more clear.

By Jennifer Pfalz

Sources:

CNN
Headlines & Global News
Forbes