How to Name a Disease

Kaleigh Rogers

Kaleigh Rogers

A lack of naming guidelines for new diseases has led to some troublesome monikers.

Image: Quinn Dombrowski/Flickr

What's in a name? Would Ebola by any other name sound just as terrifying?

For generations, there hasn't been much of a framework for how to name emerging diseases, and it's caused some controversy over the years. So the World Health Organization is taking a step to change that. Last week, the WHO published a set of best practices for naming new human diseases. It encourages researchers, scientists, and doctors (or anyone else who might be tasked with naming a newly-identified ailment) to avoid geographical locations, people's names, species of animals, and terms that "incite undue fear," such as "unknown" and "death."

Instead, the WHO suggests new diseases be named according to strictly descriptive terms, like "respiratory," or "pulmonary:"

Source: WHO

The WHO came up with these guidelines to try to steer us away from disease names that are either misinformative or stigmatic for a specific area or group of people. Take the 2009 outbreak of a new strain of H1N1. The virus was dubbed swine flu despite the fact that it was not spread by pigs, according to Kazuaki Miyagishima, the WHO director of Food Safety, Zoonoses and Foodborne Diseases and one of the members who helped establish the new recommendations.

"Because of the naming, many people became scared of eating pork and the consumption of pork went down globally," Miyagashima told me over the phone. Egypt even made the brash move to slaughter its entire pig population in an attempt to avoid spread of the disease. "It was totally useless and unnecessary," Miyagashima said.

Naming a disease after a person, place, or occupation creates a different set of hazards. Would you want to go swimming in the Ebola river or buy a cottage in Lyme, Connecticut? Should you avoid veterans if you don't want to catch Legionnaires Disease?

In the past, naming diseases was a little more poetic, but just as imprecise. Malaria, first named in the 1890s, comes from Italian for "bad air," though we now understand the virus is not transmitted through the air. Rabies, an ancient disease that was named as early at the 16th Century, comes from the Latin for "madness" or "fury." Though advanced rabies can cause people to experience abnormal behavior and delirium, the name doesn't convey much information about the cause or spread of the virus.

These days, emergent disease names are more precise, but still occasionally controversial. People who live in geographic locations eponymous with a new disease take umbrage at having to share a name with a nasty ailment, like Hendra, Australia, which shares its name with a deadly viral infection first discovered in the Brisbane suburb.

The International Committee on Taxonomy of Viruses has final say when classifying a new disease, but often a colloquial name spreads so quickly, the committee is left with few choices, which is what happened with swine flu.

"Once a wrong name or an inappropriate name is established, it is very hard to change it," Miyagashima said. "So the best option is to make sure the person—be it a scientist or a journalist—adheres to the best practices and gives an appropriate name right from the beginning."

He said the WHO considered a few different ideas for the guidelines, such as assigning each new disease a letter and number or naming new diseases after mythological characters. But ultimately they felt these guidelines allowed for the most flexibility in the medical community.

Of course, since they are just best practices, there's no guarantee anyone will adhere strictly to these new guidelines. For Ian Lipkin, an epidemiologist at Columbia University, new disease names need to be first and foremost informative.

"Virologists, with rare exceptions, try to identify the agent itself and try to identify the area in which it's been found, because that's informative," Lipkin told me. "But if you name a disease after a particular area, then it has implications for travel, trade, and tourism. It needs to be informative and it needs to not be pejorative. Those are the two things that we need to balance."

Lipkin said he's on board with the guidelines, but said there are still going to be times when the need for an informative label trumps the worry that people in a geographic area might dislike being associated with a new disease. He pointed to the naming of MERS, or Middle Eastern Respiratory Syndrome, which some officials balked at due to its geographic association.

"It was largely confined to the Middle East, so calling it MERS does make sense," Lipkin said.

Still, a lack of any kind of guiding principles in the past has led to plenty of problems—AIDS was originally given the stigmatizing moniker "gay-related immune deficiency"—and Lipkin said the WHO's attempt could help avoid similar pitfalls.

Gone may be the days of colorful disease names like "consumption" and "the vapors," but at least if people follow the new guidelines, we don't have to worry about a sudden outbreak of [YOUR FIRST NAME] virus.