I've referenced WHO policy on the use of eponyms in the naming of diseases/disorders earlier in this thread.
In May, WHO released a media release on disease naming (apologies if it has been posted elsewhere on the forum). It is mostly in relation to infectious diseases but may translate to other diseases:
WHO issues best practices for naming new human infectious diseases
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 best practices apply to new infections, syndromes, and diseases that have never been recognized or reported before in humans, that have potential public health impact, and for which there is no disease name in common usage. They do not apply to disease names that are already established.
The best practices state that a disease name should consist of generic descriptive terms, based on the symptoms that the disease causes (e.g. respiratory disease, neurologic syndrome, watery diarrhoea) and more specific descriptive terms when robust information is available on how the disease manifests, who it affects, its severity or seasonality (e.g. progressive, juvenile, severe, winter). If the pathogen that causes the disease is known, it should be part of the disease name (e.g. coronavirus, influenza virus, salmonella).
Terms that should be avoided in disease names include geographic locations (e.g. Middle East Respiratory Syndrome, Spanish Flu, Rift Valley fever), people’s names (e.g. Creutzfeldt-Jakob disease, Chagas disease), species of animal or food (e.g. swine flu, bird flu, monkey pox), cultural, population, industry or occupational references (e.g. legionnaires), and terms that incite undue fear (e.g. unknown, fatal, epidemic).
WHO developed the best practices for naming new human infectious diseases in close collaboration with the World Organisation for Animal Health (OIE) and the Food and Agriculture Organization of the United Nations (FAO), and in consultation with experts leading the International Classification of Diseases (ICD).
The new best practices do not replace the existing ICD system, but rather provide an interim solution prior to the assignment of a final ICD disease name. As these best practices only apply to disease names for common usage, they also do not affect the work of existing international authoritative bodies responsible for scientific taxonomy and nomenclature of microorganisms.
Notes to editors
The final name of any new human disease is assigned by the International Classification of Diseases (ICD), which is managed by WHO. ICD is used by doctors, nurses, researchers, health information managers and coders, policymakers, insurers and patient organizations around the world to classify diseases and other health problems and record them in a standardized way on health records and death certificates. This enables the storage and retrieval of diagnostic information for clinical, epidemiological and quality purposes. These records are also used by WHO Member States to compile national mortality and morbidity statistics. Finally, ICD is used for reimbursement and resource allocation decision-making by countries.
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Olivia Lawe Davies
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