SEATTLE — The World Health Organization (WHO) set new guidelines for naming diseases in hopes of minimizing the negative impact that outbreaks have historically had on communities. The spread of infectious disease is just the beginning of the nightmare.
The WHO is striving to confront the main axis of what has had damaging effects on people and places stricken with outbreaks. Poorly given names can stigmatize groups of people and places.
Historically, diseases have been named arbitrarily despite an official naming system that has always been in place. Many times the scientist that discovers the disease or clinician that experiences the first case coins an unofficial name that the public adopts. News reports can also initiate a trending name.
Suggestive names, like swine flu and Middle East respiratory syndrome, “incite undue fear” that results in massive damage to global communities and impedes their recovery.
When swine flu broke out in 2009, the name resulted in an extensive slaughtering of pigs in Egypt since people were terrified that pigs were the source of the deadly virus. This is an example of an instance where a disease’s name has resulted in a negative outcome. In this case, it was animal welfare and a severely damaged economy. The disease’s name took away people’s food source and income source.
The Middle East respiratory syndrome affected the area’s trade and tourism. It produced an unnecessary stigma of Middle Eastern countries and their inhabitants. In both instances, people died and economies were destabilized.
The new guidelines order that new names for diseases must include generic descriptions such as who suffers from the disease, symptoms and seasonality of the disease as well as specific descriptions such as terms to describe patients, the environment and epidemiology.
Names must use arbitrary identifiers not tied to geographical locations, species of animals, types of food or names of people.
Acronyms, such as SARS or severe acute respiratory syndrome, are acceptable. The set of letters was factual since people with the disease had respiratory complications and it was conveniently short enough for the public and the media to easily recall and refer to the disease.
People often cannot remember what the letters of an acronym stand for, so acronyms eliminate the risk of creating lasting stigmas of people or places. Giving disease numbers is also an acceptable option.
Those who oppose the new guidelines claim that it will lead to boring names that will be hard to remember. It will make it difficult to distinguish diseases and, therefore, make them harder to eradicate.
For instance, some believe that it is beneficial to have names like monkey pox since it explicitly informs people of the diseases’ usual host and its possible source of contagion.
However, Dr. Jeiji Fukuda, the WHO’s assistant director for health security, says that explicit names can actually have the opposite effect.
Take amyotrophic lateral sclerosis (ALS) as an example. The disease is more widely known as Lou Gehrig’s disease, named after a first baseman for the Yankees baseball team. Yet few people in this decade know who he is. The names of people and places lose their relevancy.
“It is important that an appropriate disease name is assigned by those who first report [the disease],” says the WHO. This can prevent the infectious disease from spreading.
Typically, scientists choose names for diseases, yet the WHO, under diplomatic pressure, needed to act in order to avoid conflict from arising.
“This may seem like a trivial issue to some, but disease names really do matter to people who are directly affected,” explains Fukuda. “[Poorly given names] can have serious consequences for people’s lives and livelihoods.”
– Lillian Sickler