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Making a name in medical research

Tagged In:  Health

Have you ever wondered exactly how a new disease gets its name? It's not as straightforward as you might think.

Imagine you've discovered a new disease. You know its symptoms. You probably know what causes it. But what do you call it? It's a problem that has been faced by doctors and biomedical scientists for centuries. From the scientific (agammaglobulinemia) to those named after the person who discovered it (Zellweger syndrome), there's a broad range of options. Yet there's no manual or official naming body to turn to for authoritative guidance.

In previous centuries, naming the disease after the person who discovered it was common practice. In fact, several discoverers actually suffered from the conditions they identified, creating what are known as 'autoeponyms'. For example, Danish doctor Julius Thomsen had lifelong inherited muscle weakness and cramps (myotonia congenita), which came to be known as Thomsen's disease.

On rare occasions, diseases have been named not after a doctor or medical researcher, but after a patient. Amyotrophic lateral sclerosis (ALS) is now widely known as Lou Gehrig's disease, after the American baseball legend who died of it in 1941.

Another common approach is to name a disease after the place it was first discovered – not exactly an honour to be prized. Zika virus is currently affecting Brazil's tourism industry, but in 1947 it stigmatised the place it was first discovered: the Zika Forest in Uganda.

Geographical disease names can also become propaganda targets. During World War I in the USA, anti-German sentiment was running high. As a result, it wasn't just the humble frankfurter that became un-pc. There were strong calls for German measles to be renamed 'liberty measles'.

In May 2015, the World Health Organization (WHO) published a best practice guide for naming of new diseases. Their aim was to 'minimise unnecessary negative impact on trade, travel, tourism or animal welfare, and avoid causing offence to any cultural, social, national, professional or ethnic groups'. 

The guide sets out six general principals that should be used in the naming process, including use of generic and specific descriptive terms, causative pathogen (if known) and awareness of potential acronyms. WHO's examples are relatively easy to understand, but there is a danger more complex terminology might be used to avoid any risk of causing offence. Names such as 22q11.2 deletion syndrome and cutis marmorata telangiectatica congenita may be accurate descriptors, but are not exactly user-friendly for those outside the medical research community.

"Having clarity and accessibility in naming is so important, " said Jay Bernhardt, founding director of the Center for Health Communication at the University of Texas-Austin, in an interview with The Nation's Health. "People's ability to understand the illness and react appropriately is arguably just as important or more important than scientists speaking with one voice." 

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