FTC Urges Congress To Better Protect Consumer Health Data

May 28, 2014 in News

On Tuesday, the Federal Trade Commission released a report recommending that Congress pass legislation to make data broker practices more transparent and give consumers more control over their personal health information, the Los Angeles Times‘ “Technology Now” reports (Faturechi, “Technology Now,” Los Angeles Times, 5/27).

Report Details

The report is based off of an FTC investigation launched in 2012 involving nine major data-broker companies that aggregate consumer information from various online and off-line sources with little oversight (Ryan, National Journal, 5/27). Those companies were:

  • Acxiom;
  • CoreLogic;
  • Datalogix;
  • eBureau;
  • ID Analytics;
  • Intelius;
  • PeekYou;
  • Rapleaf; and
  • Recorded Future (Kerr, AP/ABC News, 5/28).

Report Findings

The report found that data brokers are collecting large amounts of personal information, including medical data, about “nearly every U.S. consumer” and are operating with a “fundamental lack of transparency” (National Journal, 5/27).

Specifically, FTC noted that brokers commonly:

  • Fail to verify data;
  • Offer risk-mitigation services that let companies check consumers’ information before providing services;
  • Store data indefinitely, which could increase the risk of data theft; and
  • Sort data into potentially sensitive categories such as “cholesterol focus” and “diabetes interest.”

In addition, the report found that brokers commonly 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” (Tahir, “Vital Signs,” Modern Healthcare, 5/27).

FTC noted that such practices could increase the risk of data breaches and raise privacy concerns (National Journal, 5/27).

Recommendations

In the report, FTC called on Congress to enact legislation that would:

  • Allow consumers to access and correct their data or opt out of the data collection (“Vital Signs,” Modern Healthcare, 5/27);
  • Build a public, central database with details on the data brokers and the information they collect; and
  • Require brokers to disclose the names in and categories of their data (AP/ABC News, 5/27).

The report concluded, “Allowing consumers the ability to exercise control over the use of sensitive information is particularly important,” adding, “For categories that some consumers might find sensitive and others may not (e.g., visually impaired, balding, overweight), having access to this data, along with the ability to suppress the use of it for marketing, will improve the transparency of data broker practices and allow consumers to control uses of the data about which they care the most” (Slabodkin, Health Data Management, 5/28).

Reaction

Sen. Jay Rockefeller (D-W.Va.), who has previously introduced legislation that would increase transparency among data brokers, in a statement said, “With the release of today’s report, which is supported by Democratic and Republican FTC commissioners, our conclusion is stronger than ever — big data practices pose risks of consumer harm, including discrimination based on financial, health and other personal information.” He added, “Congress can no longer put off action on this important issue” (National Journal, 5/27).

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