What's In a Name?


Last week, the World Health Organization issued guidelines for naming new human infectious diseases. Concerned about the potential for disease names to negatively impact regions, economies, and people, the organization urged those who report on emerging diseases to adopt designations that are “scientifically sound and socially acceptable.” “This may seem like a trivial issue to some,” said Dr. Keiji Fukuda, Assistant Director-General for Health Security,” but disease names really do matter to the people who are directly affected. We’ve seen certain disease names provoke a backlash against members of particular religious or ethnic communities, create unjustified barriers to travel, commerce and trade, and trigger needless slaughtering of food animals. This can have serious consequences for peoples’ lives and livelihoods.”

According to the new guidelines, the following should be avoided: geographic locations (Lyme disease, Middle East Respiratory Syndrome, Rocky Mountain Spotted Fever, Spanish influenza, Japanese encephalitis); people’s names (Creutzfeldt-Jakob disease, Lou Gehrig’s disease, Alzheimer’s); animal species (swine flu, monkeypox); references to an industry or occupation (Legionnaires’ disease); and terms that incite undue fear (fatal, unknown, epidemic).

Instead, the WHO recommends generic descriptions based on the primary symptoms (respiratory disease, neurologic syndrome, watery diarrhea); affected groups (infant, juvenile, adult); seasonality (winter, summer); the name of the pathogen, if known (influenza, salmonella); and an “arbitrary identifier” (alpha, beta, a, b, I, II, III, 1, 2, 3).

Stigmatization caused by disease names is a legitimate concern, as we’ve seen that the way in which an appellation is chosen can have very real consequences for a community. It can alter perceptions of who is susceptible, which in turn can affect how doctors make their diagnoses and devise plans for treatment. It can shape social attitudes toward both patients and those who remain disease-free, and it can influence decisions about research and funding. When AIDS first emerged in the United States in the early 1980s, it was named GRID, or Gay Related Immune Deficiency, a measure of the extent to which it was associated with gay men. While gay and bisexual men remain the group most severely affected by HIV today, the disease’s original name undoubtedly shaped public perceptions of who was—and wasn’t—at risk.

But stigmatization can also happen apart from the process of naming a disease, a matter that the WHO guidelines would do nothing to address. In 2003, an outbreak of SARS (Severe Acute Respiratory Syndrome) in China, Vietnam and Hong Kong led to widespread stigmatization of Asian American communities as people avoided Chinatowns, Asian restaurants and supermarkets, and sometimes Asians themselves. The 1983 classification of Haitians as a high-risk group for HIV by the Centers for Disease Control and Prevention prompted a backlash against people of Haitian descent, and from 1991 to 1994 the US government quarantined nearly 300 HIV-positive Haitian refugees at Guantanamo Bay, Cuba. And then there are the diseases that have been renamed in an attempt to destigmatize them, although their new monikers would be considered unsuitable under the WHO guidelines. Leprosy, for example, is often referred to as Hansen’s disease, particularly in Hawaii, where the contagious, highly disfiguring illness devastated families and led to the establishment of disease settlements on the islands.

I’m not in favor of stigmatization, but as someone who studies the history and sociology of illness, I can’t help but wonder if something will be lost if the WHO’s recommendations are widely adopted. A disease name can influence its place in the public consciousness; it can simultaneously bring to mind a particular location or person and a constellation of symptoms. A single word, poetic in its succinctness, can suggest a range of images and associations—biological, psychological, political, and cultural. Would Ebola have the same resonance if it were called viral hemorrhagic fever? How much of our perception of Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis, involves our knowledge of the tragic physical decline of the once formidable Yankees slugger?

There are, of course, plenty of evocative diseases that don’t contain a geographic location or person’s name: polio, for instance, or cholera. But the WHO guidelines all but guarantee that the names for emerging diseases, while scientifically accurate and non-stigmatizing, will be cumbersome, clunky designations that do little to capture the public imagination. After all, who remembers the great A(H1N1)pdm09 pandemic of 2009?