Aren’t other people’s families fascinating?
That’s why media companies obsess over adulterous public officials or celebrity drug arrests. It’s our own voyeurism—soap operas drive huge audiences. And access to those audiences is, after all, the product a media company sells to advertisers.
Only if they want to spend 10 years in prison.
Because that’s the penalty for using someone’s health information for commercial gain in the United States. And information related to your health has special protection under a 1996 federal law, the Health Information Protection and Accountability Act (aka, HIPAA).
It’s a good law, that says only you control how your, or your children’s health information is used. No one can disclose it without your explicit permission. And if they do share it, even accidentally, you can sue the offender for damages with the United States Congress at your back.
But the best part of the law is that it makes your privacy a right, not a privilege. To be protected by the law, you just have to exist. A hospital can’t say, “click here to waive your rights, and then the doctor will see you.” And in my book, that’s how privacy ought to work: it’s a right for you to control, not a cat and mouse game with hidden consequences.
How does advertising mix with privacy? Advertisers hate it: the less they know about you, the less you’re worth to them. That’s why companies that sell ads craft 60 page legal agreements to Click Here before you use their app. If I were trying to separate a user from her privacy, that’s how I’d do it, too. I mean, who’s going to read all 60 pages?
But if a man were standing outside your home, photographing your family and following your kids, what would you do? Call the police. What if that man were a social media company, gathering the same photos and location data? Who would you call? Other than the social media companies themselves, there are no cops to call—Google and Facebook are conflicted (and lobbying everyone to look away).
That renders some of your most private information—your children’s current and historical locations, confidential discussions about vulnerable parents, family browsing or purchasing habits—available for sale to the highest bidder. Scared? You should be. I’ve seen enough in my career to know that privacy needs to extend beyond your health.
But am I greedy, wanting free services and total privacy? No. I believe respecting privacy is a cost of doing business. And it should be up to me to say my location’s more private than my migraines. Or my children’s data is entirely off limits. My information, my choice.
From where I stand, it’s time we take responsibility for all our data, and reject the increasingly confusing array of privacy waivers designed to strip our control or rights. To be clear, I don’t blame the social media companies, they’re behaving rationally. After all, companies don’t have ethics, people do.
We, the users, are the ones behaving irrationally, by trusting media companies and advertisers to act in our families’ best interest. That’s not their mission statement, it’s ours.
Privacy is a right, not a privilege. And unless I give you explicit permission to gather, distribute or use my family’s information, you are forbidden to do so.
If you support this idea, this is one thing I’d love you to be public about.
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