The industry collects data on Americans—their identities, their residences, and their online and offline histories—and then sells the information to interested companies. The FTC, which specifically mentions pharmaceutical companies as users of such data, is calling for legislation to give consumers more access to their data and potentially the ability to correct it or opt out entirely.
FTC asks for law giving consumers control over online health information
The commission, which raised the topic in a 2012 report, is worried that these brokers often do not verify the information, store the data indefinitely, and collect sensitive or personal information. There have been “decades marked by an expansion in the number of data brokers and the richness of data they collect,” the report warns, “but little progress in providing transparency and choices to consumers about their practices.”
For marketing purposes, segments of the data broker industry sort Americans into potentially sensitive categories about their health—such as “cholesterol focus” and “diabetes interest.”Another risk comes from holding data indefinitely, giving data thieves more opportunity to hack sensitive information. And, in the case of some products—so-called “risk-mitigation services,” where a company checks a consumer's information before concluding a transaction—a consumer might be denied service without knowing why.
Often, the report says, brokers analyze data to “predict which consumers are likely to use brand name medicine, order prescriptions by mail, research medications online, or respond to pharmaceutical advertisements.” That allows brokers to use offline data to target consumers online. Alternatively, a company could use online data and target consumers' offline lives.
Combating false or misleading data might become difficult. The report warns that brokers' information checks often aren't thorough, and that data brokers often share information among one another. So getting to the source of an error can be problematic, and that problem is compounded by the nature of the websites—they may be too confusing or unclear to understand how to access and correct data.
And, for risk-mitigation products, the report continues, “many data brokers do not provide consumers with access to their data or the ability to correct inaccurate data.”
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