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Wearables: Are we handing more tools to Big Brother?

Taylor Armerding | July 15, 2014
Most of us would love a break on our health insurance. We would generally appreciate the convenience of seeing ads for things we're actually interested in buying, instead of irrelevant "clutter." A lot of us would like someone, or something, else keeping track of how effective our workouts are.

This, according Google cofounder Larry Page, is a very good thing. Page is among those who believe that the Health Insurance Portability and Accountability Act (HIPAA), which is aimed at protecting patient privacy through limits on the sharing of Electronic Health Records (EHR), ought to be revoked or at least drastically reformed.

In a recent interview, he said if medical records were widely accessible in an online database, "I imagine that would save 10,000 lives in the first year."

But Deborah Peel, executive director of Patient Privacy Rights, told the Washington Post recently that fitness-tracking devices are "a privacy nightmare."

In a CSPAN interview earlier this year, Peel said more than 4 million businesses can access health records — ranging from employers to government agencies, insurance companies, billing firms, pharmaceutical companies, pharmaceutical benefit managers, marketing firms and data miners.

"This is a massive violation of our right to keep sensitive information private," she said, adding that, "any kind of mental health diagnosis can ruin your life."

Pam Dixon, founder and executive director of the World Privacy Forum (WPF), agrees. She is one of numerous privacy advocates who point out that most fitness trackers are currently exempt from any regulation — they are not covered by HIPAA since they are consumer devices that have not been furnished or prescribed by a health-care provider.

They are not regulated by the Food and Drug Administration (FDA) either. A footnote on the FDA website about apps says the agency does not regulate those that, "are not marketed, promoted or intended for use in the diagnosis of disease or other conditions, or in the cure, mitigation, treatment, or prevention of disease, or do not otherwise meet the definition of medical device."

Dixon, co-author of a paper on consumer privacy titled, "The Scoring of America: How Secret Consumer Scores Threaten Your Privacy and Your Future," said that once data from things like fitness trackers get into the hands of third parties, they can be used for predictive analysis of how much of a health risk a person is.

"What we found and substantiated with great repetition is that health scoring is happening," she said. "It is used, even under the Affordable Care Act, not to determine your eligibility but to determine how much you pay."

And at this point, consumers who want to use wearables have little choice about their information getting into the hands of third parties. Experts point out that one is required to accept the Terms of Service to use the device, which means in most cases that the information collected by the device is being uploaded and shared.


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