When Your Health Becomes Big Data, What’s Next?

-- By WanTingHuang - 09 Oct 2020

We enjoy the convenience of the era of Internet, carrying our cell phone or digital watch everyday and everywhere, and we give our behavior data and health data to technology companies and other corporations. However, have you imagined that what's next after your data being collected?

Turn Your Everything into the Gold

What can be sold for money from you? In the early years, poor people might sell their blood for money, whereas nowadays we sell our emotions, our thought, our footprints, and our every movement for money. That's means, any of your behavior is the gold. Moreover, your heartbeats and your steps are valuable. Insurance companies collect clients' behavior and health data to analyze and calculate the insurance rate. This is what the so-call “InsurTech” does. Hundreds of insurance companies worldwide now launch InsurTech? to do better actuary.

For example, there is an insurance company in my country, Taiwan, starting a personal insurance program in 2019 that if clients consent to give their everyday footprints and other data from their Apple health app or Google Fit and fulfill some requirements, then the company will give extra 20% of the claim. After one year, now there are eight insurance companies with more than 33 programs that have similar programs. Why those companies are so generous? Well, nothing comes for free! They collect clients’ data to evaluate risk, predict claims, and also automatically market from your life-event – the most valuable information and more precise than doing market surveys. That’s the “gold” for those companies.

Big Data & The Truman Show

People giving their personal data every moment even without conscious. You might ask how would that happen. Remember the complicated terms and conditions that you usually skip reading them and click “consent”? That’s the moment you give your “gold” for free to a company. Or, you sold them in exchange for the so-called “convenience.”

Those companies got your portrait from big data so easily, and those data have special characteristics that it is precise and hard to hide: After an entire day of hard-working, you went home, lying on the sofa. At this moment, you might think yourself hidden behind the screen or the cellphone, and nobody knows you are digging your nose or dancing nakedly in your bedroom. Nevertheless, to your surprise, people know exactly what you are doing know. They receive the behavior through your portable devices, your microphone and webcam. Furthermore, they can predict what is your next move, your next song, and even your next emotion. The more "gold" you sell to the social media or technology company, the deeper they can understand more than your imagination and especially know you more than yourself.

We all have a reasonable desire for privacy. Sitting at home without privacy is no difference from running nakedly on the street. In Silverman v. United States (1961), the Supreme Court held that “the ‘very core’ of the Fourth Amendment is the right to retreat into your own home and be free from unreasonable governmental intrusion.” Now, you are at your lovely home but you have no privacy at all. Just like “the Truman Show,” people are watching you. Unfortunately, it is constitutional because YOU consented.

Gold for You, or Gold for Millionaire

Who’s Gold

Every data is precious gold, and that’s what insurance companies and other consultant companies want to buy. But who owns those gold? The gold is owned by you. Imagine you have one million dollars, would you give it away on the street so simply? If not, why you give your data to others so simply?

The Golden Mine for Insurance Company

Data has always been central to insurance companies. Online behavior and sensor data are analogized to the gold mine for insurance companies because they could provide more precise information about their clients than traditional surveys and questionnaires or your blood. They score you on the data which you give them, such as how many time your heart beats every minute, how many milliliters of water you drink every hour, how many steps you walk everyday, how many burgers you eat every week, and how many times you get angry every month.

Nevertheless, YOU are the owner of your gold, and you are just too generous to share your wealth with insurance companies. Have you imagine that one day, when you suffer from cardio disease, and your insurance company won’t pay you a cent because they argue that you’re chronic suicide. You might think you’re just lazy but don’t know how to defense for yourself in front of those everyday data for your whole life.

Time to Take Your Gold Back

We seem too get used to thinking like a businessperson. But actually we are not businessperson but slaves who are under control of big companies, giving our data without many choices. Big data is not utterly wrong; it could help our society only as we the people could have the alternative to decide whether we want to give our gold to others or not, how much we want to give out, and when we want to call it off and get them back.

So far, the Personal Data Protect Act (PDPA) in Taiwan is less protective than General Data Protection Regulation in Europe or Health Insurance Portability and Accountability Act in America, because there are too many exceptions, which are in favor of business corporates, exist in PDPA. We should not wait for the government to protect us; instead, it’s our right to protect ourselves including our personal data. Don’t just simply click on “consent” without reading. It’s time to get your gold back.

This is a very good start. The draft coherently presents a "call to awareness" argument for a reader who hasn't given any previous thought to the subject.

For those of us who have, however, there's not a new idea in sight. Comparing Taiwan's PDPA with GDPR and HIPAA on the basis of counting "exceptions" doesn't provide any meaningful comparative analysis, or distinguish between the broad scope of GDPR and the narrow sectoral architecture of HIPAA, or discuss the difference between protecting data and protecting people.

Treating personal information as "gold," moreover, firmly drives the assumption that data is "property" into the language, making it harder rather than easier to see and criticize. If the issue you are contending with is monetization, than using property metaphors to describe peoples' rights makes monetization seem inevitable.

This draft therefore does what such a draft can do, leaving the next draft to accomplish another layer of learning. Let's try speaking not to people who haven't thought about these problems before, this time, but to readers who have. It helps us to "raise our game" to put ideas forward for the attention of people who are already familiar with the subject. Let's begin, as heal;th data is the subject of your interest, to ask what peoples' rights should be in the information about their bodies and their behavior. When we have done that, we'll probably find ourselves asking whether there is as much difference between information about physiology and information about behavior as the sectoral structure of US law makes it appear, and also asking whether "consent to use and exchange" approaches like those of the GDPR capture what we think is the proper treatment of rights.

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