Opinion | Selling Your Private Information Is a Terrible Idea (original) (raw)

Opinion|Selling Your Private Information Is a Terrible Idea

https://www.nytimes.com/2019/07/05/opinion/health-data-property-privacy.html

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We don’t allow people to sell their kidneys. We shouldn’t let them sell the details of their lives, either.

July 5, 2019

Credit...Claire Merchlinsky

Sarah Jeong

Ms. Jeong is a member of the editorial board.

“Claim Your 31st Right,” declares the #My31 app’s splash screen. “Review, share, and confirm your HUMAN right to your data as your property.”

(The United Nations Declaration of Human Rights currently has 30, so a right to data would presumably come next.)

That’s why #My31 doesn’t bill itself as a business so much as a cause. “Join the movement by staking a claim to data you’ve produced, declaring it your personal property,” proclaims the App Store description. Sign up, the app says, and “get a title of ownership for your personal data.”

The idea is that once you own your data, you can sell it. Many companies seem convinced that this is the future. PatientSphere, a platform for health care information, purports to offer patients “the ability to not only share” data on their own terms, “but also get paid for it.” PatientTruth similarly bills itself as a health record system and a way for patients to “own” and “monetize” their health data. SUPA, which markets smart exercise bras to Gen Z, offers money in exchange for data. “SUPA is tokenizing the body,” the company website declares.

All of these apps, platforms and services use blockchain — a technology first used by bitcoin, a type of digital money — to store health information. Because the term “blockchain” has become so nebulous, it’s difficult to pin down the actual upsides to storing health data this way. In most situations, blockchain is not any more secure, reliable or usable than its alternatives. But it does have one distinct advantage: A data-sharing platform can double as both database and cryptocurrency. Behold, the data pays for itself.

There’s just one small wrinkle. There’s no legal property right to personal data.

Once personal data is gathered, it’s out there for anyone to buy and sell. At the moment, there are no legal grounds to demand compensation for use. What these new companies are trying do is to create a new type of data brokerage system that replaces the current system of data brokerage. According to Richie Etwaru, the chief executive officer of Hu-manity.co, the company behind the #My31 app, de-identified health information is already being sold to pharmaceutical companies behind the scenes. This data is being gathered from service providers — like health records software companies — that work with doctors and hospitals. It’s then aggregated and sold for both research and marketing. What Hu-manity.co and its competitors want to do is make sure the patients get paid for those sales — and these new middlemen will take a small percentage, of course.

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