Alicia Potters works at a pathology lab in Florida. It wouldn't seem like a particularly Instagrammable job. The clinic gets tumors, body parts, and human remains from doctors who hope the pathologists and their assistants will identify the maladies plaguing patients—or, more often, their cause of death.
On one particular night, Potters, a pathologist's assistant, had to investigate why a woman miscarried her fetus at around 12 weeks. The job can be difficult because these medical sleuths don't often get a lot of information about their "patients." All Potters had to go on was the woman's tiny fetus which was about half the length of an adult's pinky finger.
To see if there were any developmental abnormalities, she decided to cut it down the middle, from head to tiny toes. Any other incision might have torn its soft tissues apart, obscuring why it didn't survive. Inside, Potters found malformed intestines and that part of its brain was missing.
"It was depressing," Potters, 26, told me. Potters took a photo of the fetus with her smartphone and later sent it to Nicole Angemi, a pathologist assistant more than 1,000 miles away in New Jersey. Angemi then posted it to her Instagram feed, which has half a million followers. Since it was posted 19 weeks ago, it's garnered almost 8,000 likes and more than 500 comments. This is one of seven photos Potters has sent Angemi since she started following her in May.
(WARNING: Images can be very graphic. From here on, we've hidden them using the slide tool or galleries preceded by a black screen. View at your own risk.)
Potters and Angemi didn't get permission to post the photo from the parents or the hospital that sent the fetus. But they don't see anything wrong with what they're doing. Often, we shun death and illness, but it's important for people to be aware of how we die and why, they say. Both women see what they're doing as a public service that helps educate the masses about a part of life we rarely discuss. But others see it as exploitation and voyeurism, an outgrowth of the social media-fueled thirst for instant fame that's so prevalent in our hyperconnected world. The two camps are symbolic of a larger debate going on right now over what the role of social media in medicine should be.
Angemi started uploading pathology and autopsy photos to Instagram about 18 months ago, on advice from her husband. Before that, she was largely posting to the Figure1 app, a.k.a. the ‘Instagram for doctors‘. She says she amassed a strong following there, but grew frustrated after some of her photos of abortions and dead fetuses were taken down.
“Abortions happen in medicine. You can’t censor that shit,” she told me. Figure1 wouldn't comment on specific accounts, except to say the company has strict policies about the kinds of photos that can be uploaded to the platform and that "many" of her images "do not fit within our community guidelines and would not be accepted on Figure 1 by the people on our team who moderate every post." (Emphasis theirs.) Still, many others remain on the app.
Since that happened, Angemi moved most of her activities to Instagram, where she says she can reach a wider, more diverse, audience. Figure1 has about 500,000 users, of which only 10% are non-healthcare professionals. Instagram has 400 million. Angemi says she always got personal satisfaction from showing off interesting cases she found in the lab to students and colleagues. Instagram allows her to show the whole world.
"People are actually responding and reacting," she told me. "It's so cool."
Some of those responses haven't been positive, though. She’s had issues on this platform as well. Her account has been shut down a few times. But she keeps coming back. Right now, her main account has 558,000 followers and her backup has 60,000. Since she stopped posting videos of surgeries, Instagram has let the account stay up, she says.
But here's the problem. While Figure1, built for the healthcare system, has redaction tools to make sure patient privacy is preserved, Instagram is built for maximum sharing. Health care privacy law in this country, known as HIPAA, is very strict. It's not just about not showing faces or identifying marks, like tattoos or scars. U.S. privacy laws also cover all geographic subdivisions smaller than a state, plus dates. (Instagram automatically strips location metadata.) The law also protects patient information for 50 years from the date of death. While the lab where Angemi works is required to abide by HIPAA, Instagram is not because it doesn't work directly with hospitals. (HIPAA covers businesses, not the data itself.)
Michelle Meyer, the director of bioethics policy at the Icahn Medical School in New York City, reviewed Angemi's Instagram per my request and told me by email that Angemi's account seemed to mostly comply with HIPAA. "Posting such pictures of miscarried fetuses and the like is, however, an exceptionally bad idea," she said. "Even if the average viewer can't identify a photographed patient, the patient or his or her loved ones may be able to. And we are all once and future patients. Few of us want such pictures of ourselves at our most vulnerable moments posted on social media, just waiting to go viral and attract gawking comments."
Meyer said that the posting of the photos may be a fire-able offense at their medical institutions. That's why Potters, the fan that sends Angemi photos occasionally, asked us not to use her real last name. Her employer frowns on staff taking pictures of specimens, and she fears that if they find out she's disseminating photos from inside the lab to the outside world, there's a chance that they would fire her. Angemi says the South Jersey hospital where she works thinks her account is cool, but prefers that she doesn't disclose its name.
Like Figure1, Instagram wouldn’t comment on specific accounts or their activities for this story, but a spokesperson pointed us to community guidelines that say images or videos displaying "intense, graphic violence" may be taken down "to make sure Instagram stays appropriate for everyone." The guidelines suggest that users should put a trigger warning on content that might be graphic or offensive to people. But the captions on Instagram posts come after, not before, the image, so that’s a bit like asking for an apology for pulling the trigger after a gun has been fired.
Angemi says she’s amassed such a big following because people are genuinely interested in learning about the human body and the illnesses that decimate it. The gore is an integral part of that. There is some science to back her up. “Disgust…makes us feel bad—but it has functionally evolved over time to compel our attention, thus making it a quality of entertainment messages that may keep audiences engrossed and engaged,” researchers wrote in a recent article in the Journal of Communication.
That may be why gory Instagram exists in the first place—and why it's thriving. Angemi is only one active member of Instagram’s lesser known, but strangely popular, bloody underbelly where you'll find hundreds of images of human organs, injuries, tumors, skin lesions, amputated limbs, autopsies, and, yes, fetuses. There’s @MedicalTalks, which has 724,000 fans. @SurgeryPics boasts 199,000. Others, like @MedSchoolPosts, @DeathUnderGlass, @Iran_Doctors, @Remains2BeSeen, have follower counts ranging from nearly 20,000 to 60,000. These are not insignificant numbers. Some of these accounts have more followers than brands like Microsoft, Amazon, Reebok, WIRED, Univision, Fusion, Vice, the Wall Street Journal, and the New York Times.
There's clear interest in this sort of content. Posts can get tens of thousands of likes and thousands of comments, ranging from " 😱" to "isn't it caused by a bacteria? or parasite?," "how cool!?!?," "I love this!," to "can't stop looking."
"I'm sympathetic to [Angemi] when she says that laypersons, and not just medical professionals, should be able to learn about the human body and about death. But there are better and worse ways to go about that," said Meyer. "Some of her comments (e.g., "Everyday is Halloween in Pathology!!!!!!") seem inappropriate. It's a great gift for people to donate their bodies to science. I worry that people will see things like her Instagram account and think twice about doing that."
Sometimes, the same photos will circulate between different "medical" accounts. For instance, I found the same image of a guy whose face had been speared by a metal rod on SurgeryPics and MedicalStuff. A photo of a person whose gums looked deformed also appeared on multiple accounts. And that brings up another important issue: copyright. Angemi told me she doesn't take pictures while on the job. Instead, she relies on the internet, pathology and forensics textbooks, and submissions from fans to feed her Instagram stream. Angemi wouldn't share the names of the pathology websites or books she draws images from, fearing that others would find them and try to replicate her Insta-success. (Though, arguably, referencing a textbook might give people peace of mind that their time in a hospital won't end up going viral on the internet, Meyer says.)
"I have good intentions. What I'm basically doing is taking photos that already exist and showing them in a different format," Angemi, 36, told me. "The average person would be very interested to see what [pathology and forensics] books look like, but no one is going to pay money to see that."
The books can cost hundreds of dollars, she says. While it's true that it's a shame that the knowledge is packed away in expensive tomes, is it fair that she and others are disseminating other people's work? Especially, when there's so much to be gained from platforms like Instagram.
Angemi says she's not making any money off her account, on which she spends hours on a weekly basis. But that doesn't mean she won't. (To be fair, she does have permission to post some photos, from the people who send them to her.) The best parallel here is probably I Fucking Love Science, a social-media juggernaut that purports to make science accessible to anyone who can appreciate the cute and absurd. But it's been criticized for taking other people's content and using it without attribution or permission. As science writer Nadia Drake pointed out in her criticism of IFLS on MIT's Knight Science Journalism Tracker, "it’s worth noting that merely crediting an image is not usually enough under U.S. copyright law. Except for particular situations, obtaining permission to post a copyrighted image isn’t merely a courtesy – it’s legally required."
Some might argue that these accounts' use of images falls under fair use. "Unfortunately, there's no hard and fast rule about when using someone else's image is fair use. The only way to know is to claim infringement and have a court decide," Meyer says.
Yet, not everyone seems to be policing these offenses seriously. Instagram wouldn't comment on this issue, though its guidelines state in bold that users "share only photos and videos that you've taken or have the right to share." Figure1 says it has software that alerts employees when images are found elsewhere on the web. Then they delete it, a spokesperson told me in an email. "We don’t accept images that are uploaded by someone who doesn’t own the image to the best of our ability." But if those images are only found in books, that's hard to enforce.
In a medical context, these transgressions seems worse than stealing funny memes. These photos capture people at their most vulnerable. I love science and I love to learn. Accounts like SurgeryPics and Angemi's do give me a glimpse into a world to which I might not otherwise have access. They also remind me that not everything is rosy in the world, a false notion I might come away with from fluffy Instagram accounts I follow like @HotDudesReading, @QTPugs, and @KarlTheFog. But at what cost? I wouldn't want my own or my relatives' medical miseries to be put out on Instagram for the world to see. And you probably wouldn't either.
This story is part of Real Future’s Fear Week.
Daniela Hernandez is a senior writer at Fusion. She likes science, robots, pugs, and coffee.