Given the number of new – mostly zoonotic – diseases that have appeared over the past 30 years, and the trend (see The Third Epidemiological Transition) towards seeing more of the same, the sticky issue of what to name these diseases will undoubtedly continue.
In the past, it has been customary to name a disease after its place of origin (or perceived origin), or discoverer.
Hence we’ve had the `Asian Flu’ of 1957, the `Hong Kong Flu’ of 1968, Ebola (named after the Ebola river), Lyme Disease, Legionnaire’s Disease and most recently MERS (Middle Eastern Respiratory Syndrome).
During the H1N1 pandemic of 2009, the media took to calling the virus `swine flu’ – much to the dismay of pork producers around the world who lost a lot of sales over unfounded fears of the virus. Worse, in some parts of the world, the virus was dubbed `The Mexican Flu’, which unfairly maligned an entire nation for a virus that may, or may not, even have originated there.
In recent years there have been calls to come up with a naming convention for new, emerging diseases that did not unfairly stigmatize a people, ethnic group, nation or region. Today the World Health Organization has published a set of guidelines it hopes will help prevent these sorts of problems going forward.
Given that the media and the Internet have a will of their own, and are always quick to latch onto a snappy headline or catchphrase, it will be interesting to see how much impact today’s guidance will have.
To be successful, it will be important for some agency or authority to quickly come up with and publicize an acceptable name before an independent (and possibly unfortunate) descriptor emerges and takes root. Since it took more than two years after the H1N1 virus emerged before an `official’ name was announced (see WHO: Call It A(H1N1)pdm09), who gets to handle this `hot potato’ is far from clear.
First, excepts from the press release, followed by a link and excerpts from the Guidelines.
Note for the media
8 May 2015 | GENEVA - WHO today called on scientists, national authorities and the media to follow best practices in naming new human infectious diseases to minimize unnecessary negative effects on nations, economies and people.
“In recent years, several new human infectious diseases have emerged. The use of names such as ‘swine flu’ and ‘Middle East Respiratory Syndrome’ has had unintended negative impacts by stigmatizing certain communities or economic sectors,” says Dr Keiji Fukuda, Assistant Director-General for Health Security, WHO. “This may seem like a trivial issue to some, 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.”
Diseases are often given common names by people outside of the scientific community. Once disease names are established in common usage through the Internet and social media, they are difficult to change, even if an inappropriate name is being used. Therefore, it is important that whoever first reports on a newly identified human disease uses an appropriate name that is scientifically sound and socially acceptable.
The World Health Organization (WHO), in consultation and collaboration with the World Organisation for Animal Health (OIE) and the Food and Agriculture Organization of the United Nations (FAO), has identified best practices for the naming of new human diseases, with the aim to minimize unnecessary negative impact of disease names on trade, travel, tourism or animal welfare, and avoid causing offence to any cultural, social, national, regional, professional or ethnic groups.
Given the increasingly rapid and global communication through social media and other electronic means, it is important that an appropriate disease name is assigned by those who first report a new human disease. WHO strongly encourage scientists, national authorities, the national and international media and other stakeholders to follow the best practices set out in this document when naming a human disease. If an inappropriate name is released or used or if a disease remains unnamed, WHO, the agency responsible for global public health events, may issue an interim name for the diseases and recommend its use, so that inappropriate names do not become established.
The name assigned to a new human disease by WHO or other parties following the present best practices may or may not be confirmed by the International Classification of Diseases (ICD1) at a later stage. The ICD, managed by WHO and endorsed by its Member States, provides a final standard name for each human disease according to standard guidelines that are also aimed at reducing negative impact from names while balancing science, communication, and policy. Thus, the best practices are not intended to replace or interfere with the existing ICD system, but span the gap between identification of a new human disease event and assigning of a final name by ICD. Further, WHO recognizes that existing international systems and bodies are responsible for taxonomy and nomenclature of pathogens, which are not directly affected by these best practices.
Scope of disease naming
The present best practices apply to a new disease:
• That is an infection, syndrome, or disease of humans;
• That has never been recognized before in humans;
• That has potential public health impact; and
• Where no disease name is yet established in common usage
Best practices for disease naming
A disease name should consist of a combination of terms listed in Table A, based on the below principles. Terms listed in Table B should be avoided. General principles of use of terms include:
1. Generic descriptive terms can be used in any name. Generic terms will be most useful when available information on the disease or syndrome is not sufficiently robust, because these basic characteristics are unlikely to change as additional information become available.
e.g. respiratory disease, hepatitis, neurologic syndrome, watery diarrhoea, enteritis
2. Specific descriptive terms should be used whenever the available information is considered sufficiently robust that the vast changes to the epidemiology or clinical picture are unlikely to occur. Plain terms are preferred to highly technical terms.
e.g. progressive, juvenile, severe, winter
3. If the causative pathogen is known, it should be used as part of the disease name with additional descriptors. The pathogen should not be directly equated with the disease as a pathogen may cause more than one disease.
e.g. novel coronavirus respiratory syndrome
4. Names should be short (minimum number of characters) and easy to pronounce.
e.g. H7N9, rabies, malaria, polio
5. Given that long names are likely to be shortened into an acronym, potential acronyms should be evaluated to ensure they also comply with these best practices.
6. Names should be as consistent as possible with guidance from the International Classification of Diseases (ICD) Content Model Reference Guide