The law should treat personal data like human organs – not for sale

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Chuck Goolsbee, site director for Facebook’s Prineville data centres, shows the computer servers that store users’ photos and other data, at the Facebook site in Prineville, Ore. on Oct. 15, 2013.Andy Tullis/The Associated Press

Adin Wagner is a freelance writer and lawyer based in Toronto.

We all know, at this point, the ways we are being watched. Purchases, clicks, how long we linger on one video versus another. A great chunk of ourselves is tracked, documented then sold to an indeterminate number of bidders.

But we do not like it. When Apple, for instance, let iPhone users easily opt out of data tracking on apps, 96 per cent selected “ask App not to track.” A 4-per-cent approval rating, clear as day.

Yet despite our concerns, we take the corporate hoarding of our digital lives as a given. As much as it unnerves us, Reddit simply has the right to strike a deal with OpenAI for access to troves of user data. All we can expect is to chip away at the margins, limiting the use or sale of personal data in specific ways, or punishing specific companies for particularly egregious breaches of privacy.

Privacy regulations are often circumvented. Requirements of consent for personal data collection quickly turn into cookie banners engineered for “consent rate optimization” – confusing pop-up windows that seem to always frustrate you into consenting. It is no wonder that there is a collective sense of futility toward the commodification of our data, what researchers have termed “digital resignation.”

So why not just eliminate the market? It’s been done before.

Organs and tissue, for example, cannot be bought and sold in Canada. Despite the pressing medical need for organs, demand is met by donation only. The thought behind this legal scheme is not just that the market for organs would be difficult to regulate, but that the sale of organs would inevitably result in the exploitation of the most vulnerable.

It has been recognized, in other words, that commodifying the physical person is so inherently destructive – so inherently dehumanizing – that it must be banned entirely.

Admittedly, my kidney and my consumer preference for straight-cut jeans are not analogous. The everyday incursions on people’s privacy mostly go unnoticed. But it would be wrong to reduce what is being done into isolated acts. Discreet breaches of privacy are one thing, but over all, something huge is being extracted from inside of us, slowly, steadily.

The details of the way we live online – our digital personhood – have been made into a very profitable product. And as the industry of surveillance advertising has swollen into dominance, massive sets of data are swilling about with abandon.

A recent Google leak revealed that the tech behemoth accidentally collected children’s voice data and leaked the trips and home addresses of carpool users, among other incidents. In other unsettling news, BetterHelp, the online mental-health counselling company, settled with the U.S. Federal Trade Commission over allegations that it improperly shared customers’ sensitive data with companies including Meta Platforms and Snapchat. In its statement after the settlement, BetterHelp insisted that this “industry-standard practice is routinely used by some of the largest health providers, health systems, and healthcare brands.”

I could move beyond examples and point out how commercial surveillance has fractured the media landscape, facilitated fraud and made it so that personalized data are driving our TV preferences to the extent that no one is watching the same shows any more – all of which, taken together, seems corruptive, exploitative and downright creepy.

Policy is often a question of balance. There are always trade-offs. Canadian organ donation policy, for example, weighs the inherent destructiveness of an organ market with the dire medical need for organs. As a comparison, the stated purpose of Canada’s privacy legislation is to balance individual privacy rights with the “need of organizations to collect, use or disclose personal information for purposes that a reasonable person would consider appropriate in the circumstances.”

For some reason, when it comes to protecting our most intimate and personal information, policy consistently prioritizes a surveillance-based form of advertising that barely anyone likes. Sure, one could argue that tracking a mouse pad is not as severe as buying someone’s kidney. But saving someone’s life with that kidney is a far greater benefit than facilitating Meta’s advertising dominance. And despite the medical need for them, Canada has banned the market for kidneys because it is apparent what allowing it would unleash. The country should do what’s right and ban the sale of personal data, too.

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“This is another huge extension.”

“Article URL: https://www.theglobeandmail.com/business/commentary/article-the-law-should-treat-personal-data-like-human-organs-not-for-sale/ Comments URL: https://news.ycombinator.com/item?id=40800139 Points: 11 # Comments: 5”

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