Should Diseases Be Renamed When Science Advances?
For a long time, there were no clear rules for naming diseases. Some conditions, such as Hodgkin lymphoma, were named after the individuals who identified them, whereas other terms, such as “hysteria,” were...
For a long time, there were no clear rules for naming diseases. Some conditions, such as Hodgkin lymphoma , were named after the individuals who identified them, whereas other terms, such as “hysteria,” were eventually abandoned because they were stigmatizing and did not accurately describe the symptoms experienced by patients.
Evidence shows that medical nomenclature can reinforce stigma among healthcare professionals, patients, and the public while also influencing how health conditions are understood and the questions researchers investigate. Patients can ultimately be affected by inaccurate disease names, from how they understand their condition to how they receive care.
Speaking with Medscape’s Spanish edition , Ariel Vilchis Reyes, MD, a member of the Gender Studies in Health Program in the Department of Public Health, Faculty of Medicine, National Autonomous University of Mexico, Mexico City, highlighted the importance of language in medicine: “The way we name things provides an initial perspective when we refer to a medical condition; it creates a preconceived notion about the illness in people, which is why it is recommended that we exercise great caution with our language.” The recent renaming of polycystic ovary syndrome to polyendocrine metabolic ovarian syndrome provides a clear example of how disease nomenclature can influence the understanding of a condition.
The condition was initially called Stein-Leventhal syndrome , in honor of the gynecologists who provided the first documented description of patients with infertility, amenorrhea , and “polycystic ovaries.” The reference to polycystic ovaries later became the basis for the name most commonly used today: polycystic ovary syndrome .
However, with advances in scientific and technological understanding, polycystic ovaries have become only one of several diagnostic features. This prompted decades of debate over the terminology that expert groups criticized as confusing and potentially misleading. The 2026 International Consensus Process ultimately identified polyendocrine metabolic ovarian syndrome as the preferred new name.
In this context, renaming diseases may become appropriate when advances in understanding provide a more comprehensive view of a condition and prompt reconsideration of whether its name accurately reflects that knowledge. Another recent example is nonalcoholic fatty liver disease , a term criticized for defining the condition by the absence of alcohol-related liver disease instead of describing its underlying metabolic features.
This terminology was considered to trivialize the severity of the condition and obscure its metabolic origin. Consequently, the condition was renamed in 2023 as metabolic dysfunction-associated steatotic liver disease. Recognizing the problems caused by inappropriate disease names, the World Health Organization published guidelines in 2015 for naming new human infectious diseases to ensure that names are scientifically sound and socially acceptable.
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The Cost of a Name The Global Consortium for the Renaming of Polycystic Ovary Syndrome has identified several concerns in its consensus statement. First, the name suggests the presence of pathologic ovarian cysts , which are not a characteristic feature of the condition and may lead to misunderstandings.
The syndrome encompasses endocrine, metabolic, reproductive, psychological, and dermatologic manifestations; however, the current name refers to a single organ and does not reflect its multisystem nature. This terminology may contribute to delayed diagnosis and fragmented care and create barriers to communication between patients and healthcare professionals.
The reproductive focus of the name may also reinforce stigma, particularly in sociocultural settings where fertility is highly valued. The name also creates challenges for research by complicating epidemiologic classification, comparisons, and health system coding, which may hinder efforts to better understand the syndrome and improve care.
“The case of polyendocrine metabolic ovarian syndrome is not an isolated one; I believe this will even serve as an example of what we will see in other diseases we recognize because a single feature has often been emphasized, sometimes the most important one or the first to be identified.
However, no disease exists in isolation. When one part of the body is affected, other systems can also be affected. This case presents an opportunity to study diseases more comprehensively from now on,” Vilchis Reyes said.
Polyendocrine metabolic ovarian syndrome and metabolic dysfunction-associated steatotic liver disease are not the only conditions whose names have been debated in recent years. Proposed alternatives include “ arginine vasopressin deficiency ” and “arginine vasopressin resistance” for diabetes insipidus .
Schizophrenia has also been the subject of approximately 30 prominent renaming proposals without consensus. In the absence of a joint statement, many gynecologists prefer the term primary ovarian insufficiency instead of premature ovarian failure. Vilchis Reyes also added dysmenorrhea to the list.
He noted that the condition has gained public attention because it has been considered in policies granting sick leave in countries such as Mexico and Spain, but which is still not fully recognized: “A comprehensive study of this condition, characterized by menstrual pain, also shows that it can cause emotional disturbances and is associated with metabolic changes.
It is another example of why it is important to study disease comprehensively and recognize that it affects more than one organ,” he said. Renaming diseases can help refine diagnoses, reduce stigma, and support more comprehensive and, in some cases, personalized treatment. Updating disease terminology can also help align clinical and research systems with the current understanding for the benefit of patients.
Vilchis Reyes reported having no relevant conflicts of interest. This story was translated from Medscape’s Spanish edition .
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