Schumer wrote that he sees a potential “privacy nightmare” if companies like FitBit (and he calls that company out by name) are allowed to profit from selling user biometrics data to third party data brokers like Acxiom.
He also worries that the data could even be shared with insurers, mortgage lenders, or employers.
“Personal fitness bracelets and the data they collect on your health, sleep, and location, should be just that — personal. The fact that private health data — rich enough to identify the user’s gait — is being gathered by applications like Fitbit and can then be sold to third-parties without the user’s consent is a true privacy nightmare,” Schumer wrote.
Schumer’s press release goes into all-caps for this statement: “WITHOUT THEIR KNOWLEDGE, FITBIT BRACELETS & SMARTPHONE APPS ARE TRACKING USER’S MOVEMENTS AND HEALTH DATA THAT COULD BE SOLD TO THIRD PARTIES.”
Schumer is calling for the Federal Trade Commission (FTC) to require wearables manufacturers to tell consumers if their personal information is being shared with third parties, and give them a chance to opt out.
Indeed, the FTC has been looking at the privacy around personal data collected by health apps and devices. The FTC “has openly voiced its concern about the selling of personal fitness data between companies, but has yet to take action to push application developers and other fitness monitoring companies to provide an opt-out opportunity,” Schumer says.
The FTC did a study on this subject in May and found that the 12 mobile health and fitness apps were sending users’ personal information to 76 different third parties. Third parties included advertising companies and data brokers.
And last month FTC Commissioner Julie Brill made clear that she considers collection and use of data to be one and the same, and that she thinks there should be heavy restrictions on how and when personal health data can be collected, which would have a major impact on the future of mobile health.
But health researchers could benefit from collecting personal health data, too. A study conducted last April found that 90 percent of the consumers polled are ready to share personal health information to help researchers better understand a disease, particularly if they can do so anonymously.
This will be one of the many issues the FTC will have to consider if it wishes to regulate on personal health data without causing unintended consequences.