It's Not a Good Idea to Share Your Personal Health Data

If you read my articles, you know that I'm very frank about my own health issues. I have revealed just about everything except my favorite color of hospital socks (and just for the record, I prefer yellow), but I have always felt that it's important for me to be upfront about my own success with my own personal health program. For surviving life-threatening situations, I do great. For avoiding them, not so much.

A Future Scenario in Which Shared Personal Health Data Goes Bad

The year is 2987. Zbignar and Prevlak experience torrents of titulation at a random brain-to-brain data transfer. They take the wormhole to the bar at the edge of the universe to meet for a drink to assess the probability of sexual congress. Initial intimacy analysis was promising, but then Prevlak notices that Zbignar's heart rate variability does not increase in her voluptuous presence. She promptly beams him into open space.

Or let's consider something a bit more realistic. The year is 2019. Sally and Harry are on a date. As they are sipping their second cocktail, each of them is anxious to take a peek at the wearable devices each of them uses to answer an important question:

What is my heart rate variability?

Heart rate variability is the time between heartbeats. It is also an indicator of female sexual dysfunction or impotence in men. Heart rate variability is a useful indicator of various body functions governed by the autonomic pathway, which consists of sympathetic nerves from the eleventh thoracic to the second lumbar spinal cord segments and parasympathetic nerves from the second to fourth sacral spinal cord segments. A wearable heart monitor can give a estimate of abilities in bed, and also whether someone will get the burps after dinner.

When most of us think about sensitive personal information, we think about things like passwords, social media accounts, police records, employment history, text messages, G-chats, and Reddit. We don't think about our wearable fitness devices. 

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The truth is, there is a treasure trove of data about us in our fitness devices, and there are companies that in the early stages of research that will allow them to analyze that data for commercial decisions. The kind of world that was described in the movie Minority Report is not imminent, but the amount of information about not just mental but psychological health that is revealed by fitness devices is staggering. A lot of the links between biodata and health outcomes are not yet proven, but the data are accumulating so that in the future, the near future, they can be used to develop algorithms that predict not just fitness and health, but future behaviors that are of interest to lovers, spouses, parents, children, employers, marketers, police, and national security agencies. Even worse, it is inevitable that hackers will eventually turn their attention to fitness devices. 

Aside From Sexual Prowess, What Other Kinds of Predictions Can Be Made from Heart Rate Variability?

The idea that heart rate predicts behavior is not new. It is not something that requires an advanced degree to use in practical situations. We all "know" that faster heartbeat can indicate someone is anxious, or lying, or under physical or emotional stress. And if someone is under emotional stress, maybe it's because he or she is guilty of a crime, one we know about already, or maybe one we don't.

In a University of California at Berkeley study entitled "Trust Your Heart: Assessing Cooperation and Trust with Biosignals in Computer-Mediated Interactions" that is currently under prepublication review, a psychology study of subjects asked to play a trust game were less likely to trust and cooperate with their partners when they were told they had a fast heart rate. In another University of California BioSENSE lab study entitled "Habits of the Heart(rate): Social Interpretation of Biosignals in Two Interaction Contexts," will is finalized but not yet published, researchers put subjects in an imaginary scenario in which they were to meet a friend about a legal dispute, and the friend sends a text that she is running late. In the study, participants stated that the friend who was running late should have a higher heart rate to establish trust, proving she (or he) cared about the meeting.

Is any of this really threatening?

The problem is not so much that advanced algorithms will produce accurate interpretations of heart rate data in the near future. The greater danger is that preliminary data will construed as accurate and used to make unfair decisions. 

Already there is an Apple and Google app called Cardiogram that promises to answer the question "What's your heart telling you?" Your heart beats more than 100,000 times per day, and it reacts to everything that happens in your life, the app makers tell us, "what you're eating, how you exercise, a stressful moment, or a happy memory."

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Data from fitness devices is not regulated by the Federal Trade Commission. It is not covered by the Health Insurance Portability and Accountability Act (HIPAA). Nonetheless, wearable and Internet-connected fitness devices that were optional at gyms and fitness clubs are becoming mandatory at work. Supervisors who have access to heart rate variability and sleep data could use this data, without scientific basis, to predict which employees will be better performers and happier employees. They could even use this data to make a poorly informed guess as to which employees are likely to become enraged by bad news in the workplace. (These persons tend to have slow heart rates, by the way. You simply can't win with either a slow or fast heart rate.) Or they could reject job applications on the basis of this data to save money on health insurance costs.

There are situations in which employers need to know employee health data to make sure workers are safe. It's legitimate to measure exposure to radiation, for example. No employee should refuse a dosimeter when working in a nuclear power plant. But if you care about your job, resist employer monitoring of your heart rate. Your supervisor just doesn't really know how to use this kind of personal health data fairly or even accurately.