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By the time the video of Nina Pham was released last week, most Americans were likely familiar with her name–and the fact that she is one of two nurses diagnosed with Ebola after treating victim Thomas Eric Duncan. In the video, uploaded by Dallas Presbyterian Hospital, where Pham was working when she contracted the disease, the nurse smiles through tears as she gives her love to the hospital’s hazmat-suit-clad director before being transported to the National Institutes of Health for further treatment.
It was the most vivid portrait of the 26-year-old nurse, but by no means the only one since her diagnosis. Profiles quoting Pham’s friends and coworkers have familiarized readers with the “conscientious” nurse’s personal qualities, like her “contagious laugh,” and the details of her personal life. Pham’s home has received the kind of attention reserved for grisly crime scenes: Reporters have camped out on her doorstep (or at least, as close as Centers for Disease Control and Prevention blockades will allow), and interviewed her weary neighbors who–surprise–are concerned about their risk of contracting Ebola. The media circus has been even more extreme for Amber Vinson*, the second nurse diagnosed–she traveled before her quarantine, prompting similar stakeouts in two locations.
After being reported, Pham and Vinson’s identities were confirmed by their families. But it’s unclear how their names reached the press in the first place when strong medical privacy laws are aimed at preventing such disclosures. Dallas Presbyterian even pre-empted inquiries when it summarized those laws in an October 13 press release, just a few days before releasing updates and statements from Nina Pham. That second release was approved by Pham–a representative from the hospital assured me that they “always follow HIPAA guidelines,” which dictate as much. But she declined to elaborate on why they’d asked permission to release personal details about Pham, and then Vinson, in the first place. Left unsaid: that the hospital is benefiting from the support of Pham and the distraction of light profiles rather than more targeted investigative reporting on its mess-ups treating Duncan.
And it’s equally unclear whether knowing who they are does more than invade victim privacy and distract from the kind of reporting that might help transmit useful information about the disease.
This isn’t a new debate. The media frenzy around Edgar Hernandez, a wide-eyed young boy whom doctors fingered as the first victim of swine flu (it was never confirmed, though his village built a “Niño Cero” statue), was so great that Time named him one of their “people of the year” in 2009. Journalists wrote less glowingly of Andrew Speaker, a newlywed who incited an international health scare by taking a series of flights to return from his honeymoon in Europe despite the fact that he had tuberculosis. Speaker was vilified in the press and then responded with a series of lawsuits, arguing that the CDC had violated medical privacy laws when the organization released personal details (including his flight information and name), when an outbreak could have been stopped by just contacting passengers potentially exposed to TB.
Releasing the names of disease victims may be a long-time controversy, but the 24-hour-news cycle has injected some new elements, like the potential for information to go viral in an instant, making celebrities from a single blog post, and the bottomless space for new detail entices audiences to demand more when they’re not offered immediately.
Rather than waiting for readers to speculate–or to attempt armchair investigations, like when the wrong suspects in the Boston Marathon bombings were accused on Reddit–some argue that the best practice in today’s environment is full disclosure.
“I think, in general, the best weapon to have against panic is information,” says Arthur Caplan, director of ethics at NYU’s Medical Center. “I don’t think secrecy is your friend–it leads to conspiracy theories at large.” And while Caplan doesn’t think that patient names are necessary, he does believe that full disclosure of health statuses and whereabouts–things that are considered private under current medical laws–would help calm the public.
That’s not to say all publications think it’s helpful to jump on the extreme-detail bandwagon. The four-person team covering Ebola at Science has largely declined to use the patient’s names or personal details in stories–except where those details are relevant to illuminating something about the disease, like a profile series of health workers who recovered from Ebola. For things that carry stigma, like HIV, and like Ebola, Jon Cohen, the American-based reporter in the Science group, is still hesitant to use names if his subjects aren’t aware of the full ramifications of the disclosure. “I’ve reported on HIV for decades and I’m very careful about revealing anyone’s HIV status without their permission,” says Cohen. “Even if they give me their permission I’m still careful.”
The main benefit of personal reporting, in general, is that it incites empathy in readers–and a part of what’s raised the level of concern for the less-publicized, nameless victims in Africa is the focus on the American victims who are more relatable to a western audience. Since Ebola resurfaced in Africa, its victims have largely been portrayed as statistics. Including names and personal details helps transform statistics into people, not disease vectors. At least, the people infected here.
“I think there was a sense of wanting the public to know a bit about these women, about who they are,” wrote Jack Healy, a reporter for The New York Times who’s been covering Ebola in Dallas. “I think, it’s instead, about humanizing them versus respecting their right to privacy.”
That’s not to say allowing your character to be built by the Western press won’t produce winners and losers. Louise Troh, the woman Duncan visited in Dallas told the Times that the media attention has made her stressed. “We are not criminals. We are here legally. Leave us alone,” she said. Whereas Pham’s attention has a more concrete application: at last count, a donation page to support her in her plight had raised over $80,000.
*Amber Vinson’s last name was originally misspelled in this story.
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