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Why You Should Think Twice Before Sharing a Covid Diagnosis

 2 years ago
source link: https://www.wired.com/story/covid-health-privacy-diagnosis-amy-gajda/
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Apr 14, 2022 7:00 AM

Why You Should Think Twice Before Sharing a Covid Diagnosis

At this point, many people wouldn't hesitate to say they've contracted the virus. This social norm has unsettling ramifications for medical privacy.
Collage of images whispering medical files COVID particles and a positive COVID test
Photo-Illustration: Sam Whitney; Getty Images
This story is adapted from Seek and Hide: The Tangled History of the Right to Privacy, by Amy Gajda.

I know three people recovering from Covid at the moment. I know this because they told me.

That might not seem like a big deal these days, when a Covid diagnosis often slips off the tongue as easily as mention of the common cold. But it matters a lot both to our collective right to privacy and an individual’s right to privacy, now and later.

First, some background. Privacy in medical matters has long been a part of law in the United States but took more official legal hold in the 1840s. Maybe it’s not the best pandemic parallel, but back then one man suggested that another was “a clappy d[amned] son of a bitch” who’d “been rotten with the clap this two or three years.” The mere mention of that sort of diagnosis was so secret and so scandalous that the rotten, clappy man could sue even if the information were true. Revelations about what was called “the itch” were just as bad. Humans are sympathetic creatures who deserve protection against publications calculated to exclude them from society, the Supreme Court wrote in explanation.

Judges didn’t use the word privacy much back then. “The greater the truth, the greater the libel,” they used to say, meaning that the greater the accuracy of embarrassing information, the greater the harm to an individual should that information be released.

In more modern times, we call the revelation of truthful private information “Publicity Given Private Life.” That tort makes it wrong to reveal another person’s private information: “sexual relations,” for example, “most intimate letters,” and, important here, “many unpleasant or humiliating illnesses.”

That’s language from an influential treatise of sorts called the Restatement of Torts and it offers several medical-related off-limits examples: A person sick in the hospital with a “rare disease” could keep an investigative reporter out of the hospital room; parents whose disabled baby died could sue a newspaper that published the baby’s photo and life story; a patient who underwent surgery could sue when video of the surgery was published without permission.

Key in each is that the information was true, but the individual’s interests in privacy trumped those truths.

This is in part why NFL player Jason Pierre-Paul won a medical privacy lawsuit a few years ago against ESPN. ESPN reporters had published word that he’d needed a finger amputated and attached his medical records as proof. A court found that the revelation of that information was enough to support a valid privacy claim that, by tradition in the United States, specific medical information should not be released without a person’s permission, even when that person is a public figure and his surgery is newsworthy. “[F]ederal and state medical privacy laws,” the court wrote, “signal that an individual's medical records are generally considered private.”

But another big part of why the football player won his case was that he had not shared those medical records with anybody outside of maybe family and close friends. Yes, the Restatement suggests, medical information is “normally entirely private.” But then it adds this: “there is no liability for giving further publicity to what the plaintiff himself leaves open to the public eye.”

What that means is that if we tell people our secrets, they aren’t really all that secret anymore, at least in a legal sense. The more we talk about things with others, including private things that might be embarrassing to us if they were later revealed more publicly, the less privacy we have. Now, but also later.

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That’s why our new collective tradition of sharing Covid diagnoses has the potential to impact both law and individuals.

First, such open sharing could suggest a change in our sense of what’s private and what’s not, and the suggestion that certain medical information shouldn’t be treated as hush-hush anymore because society has moved on. If that’s right, such a change in social sensibilities could eventually change the law. Privacy often looks to what people are feeling and what they are doing; the right to privacy is “relative to the customs of the time and place” and the habits of neighbors and fellow citizens, the Restatement says. Therefore, the more we openly share our Covid diagnoses, the more the law would suggest that we’ve decided that individual Covid diagnoses are open for public discussion. These days, no one could sue for invasion of privacy if someone else revealed that they had a cold; we share such information so very openly that it wouldn’t meet the “highly offensive” threshold that supports a valid privacy claim.

But Covid is different from the common cold. Covid may be mild at times, but it kills people at times too and leaves others debilitated and devastated for months, if not longer. And, even more important here, we ultimately have no idea what the future holds for those who’ve had it.

That’s why how much a person shares about a Covid diagnosis could affect their right to privacy individually someday too. Studies on long Covid suggest grim outcomes: “greater reduction in grey matter thickness” in the brain, “greater changes in markers of tissue damage” in the brain, and “greater reduction in global brain size.” That’s the word from scientists who recently published a paper in Nature titled in part “SARS-CoV-2 is Associated With Changes in Brain Structure.” It begins this way: “There is strong evidence for brain-related abnormalities in COVID-19.”

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And based on the data that’s made available about any one of us—information from social media posts about our diagnoses or information from credit card companies about what we like to buy or information from geolocation data about where we like to go—data that could be shared with would-be employers and life insurance companies to name two, it’s not too much of a stretch to say that there are many who would be interested in such a diagnosis, perhaps now but maybe even especially later. Why hire someone who may have a brain abnormality? Why insure that person?

The Restatement’s assessment that “there is no liability for giving further publicity to what the plaintiff himself leaves open to the public eye” is rather chilling in a world with Covid and social media and current sensibilities about sharing. It’s why the best advice might well be not to leave much at all open to the public eye, even a medical diagnosis that seems fairly innocuous now but could turn out to be far from that later.

The news isn’t all bad with regard to privacy in a Covid diagnosis, however; there is more than a glimmer of hope here, even for those who’ve revealed that they were Covid-positive. Remember the line about social sensibilities helping to define privacy interests? Today, many of us, and some put the number as high as 90%, feel strongly about another type of privacy: the right to be forgotten, especially the right to be forgotten with regard to our deeply personal medical records. In other words, they believe that such information, even if shared, should be able to be shielded later.

If the law begins to agree—and it arguably already has and has for well more than a century in the United States—one day, that Covid diagnosis freely posted on social media could have its very own privacy cloak even so, thanks to a very American right to be forgotten.


From Seek and Hide by Amy Gajda, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2022 by Amy Gajda.


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