“What’s in a name?”: Using mpox as a case study to understand the importance of communication, advocacy, and information accuracy in disease nomenclature

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Abstract

Historically, many diseases have been named after the species or location of discovery, the discovering scientists, or the most impacted population. However, species-specific disease names often misrepresent the true reservoir; location-based disease names are frequently targeted with xenophobia; some of the discovering scientists have darker histories; and impacted populations have been stigmatized for this association. Acknowledging these concerns, the World Health Organization now proposes naming diseases after their causative pathogen or symptomatology. Recently, this guidance has been retrospectively applied to a disease at the center of an outbreak rife with stigmatization and misinformation: mpox (f.k.a. ‘monkeypox’). This disease, historically endemic to west and central Africa, has prompted racist remarks as it spread globally in 2022 in an epidemic ongoing today. Moreover, its elevated prevalence among men who have sex with men has yielded increased stigma against the LGBTQ+ community. To address these prejudicial associations, ‘monkeypox’ was renamed ‘mpox’ in November 2022. We used publicly available data from Google Search Trends to determine which countries were quicker to adopt this name change—and understand factors that limit or facilitate its use. Specifically, we built regression models to quantify the relationship between ’mpox’ search intensity in a given country and the country’s type of political regime, robustness of sociopolitical and health systems, level of pandemic preparedness, extent of gender and educational inequalities, and temporal evolution of mpox cases through December 2023. Our results suggest that, when compared to ‘monkeypox’ search intensity, ’mpox’ search intensity was significantly higher in countries with any history of mpox outbreaks or higher levels of LGBTQ+ acceptance; meanwhile, ‘mpox’ search intensity was significantly lower in countries governed by leaders who had recently propagated infectious disease misinformation. Among infectious diseases with stigmatizing names, mpox is among the first to be revised retrospectively. While the adoption of a given disease name will be context-specific—depending in part on its origins and the affected subpopulations—our study provides generalizable insights, applicable to future changes in disease nomenclature.
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Abstract Historically, many diseases have been named after the species or location of discovery, the discovering scientists, or the most impacted population. However, species-specific disease names often misrepresent the true reservoir; location-based disease names are frequently targeted with xenophobia; some of the discovering scientists have darker histories; and impacted populations have been stigmatized for this association. Acknowledging these concerns, the World Health Organization now proposes naming diseases after their causative pathogen or symptomatology. Recently, this guidance has been retrospectively applied to a disease at the center of an outbreak rife with stigmatization and misinformation: mpox (f.k.a. ‘monkeypox’). This disease, historically endemic to west and central Africa, has prompted racist remarks as it spread globally in 2022 in an epidemic ongoing today. Moreover, its elevated prevalence among men who have sex with men has yielded increased stigma against the LGBTQ+ community. To address these prejudicial associations, ‘monkeypox’ was renamed ‘mpox’ in November 2022. We used publicly available data from Google Search Trends to determine which countries were quicker to adopt this name change—and understand factors that limit or facilitate its use. Specifically, we built regression models to quantify the relationship between ’mpox’ search intensity in a given country and the country’s type of political regime, robustness of sociopolitical and health systems, level of pandemic preparedness, extent of gender and educational inequalities, and temporal evolution of mpox cases through December 2023. Our results suggest that, when compared to ‘monkeypox’ search intensity, ’mpox’ search intensity was significantly higher in countries with any history of mpox outbreaks or higher levels of LGBTQ+ acceptance; meanwhile, ‘mpox’ search intensity was significantly lower in countries governed by leaders who had recently propagated infectious disease misinformation. Among infectious diseases with stigmatizing names, mpox is among the first to be revised retrospectively. While the adoption of a given disease name will be context-specific—depending in part on its origins and the affected subpopulations—our study provides generalizable insights, applicable to future changes in disease nomenclature. Competing Interest Statement ENH reports contracts from the Global Listening Project and Council on Foreign Relations outside of the submitted work. All other authors declare no competing interests. Funding Statement This research was supported in part by the National Institute of General Medical Sciences, National Institutes of Health (R35GM146974); the National Science Foundation (SES2200228, SES2230083, & IIS2229881); and the MIT-Harvard Broad Institute Eric & Wendy Schmidt Center. The funding sources had no involvement in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the paper for publication. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability All data in this analysis are openly available and provided via citations. - CPI - Corruption Perception Index - GAI - Global Acceptance Index - GBMSM - Gay, Bisexual, and other Men who have Sex with Men - GDP - Gross Domestic Product - GST - Google Search Trends - GHSI - Global Health Security Index - HAQI - Healthcare Access and Quality Index - LGBTQ+ - Lesbian, Gay, Bisexual, Transgender, Queer or Questioning, intersex, asexual, and more - MSM - Men who have Sex with Men - WHO - World Health Organization - UI - Uncertainty Interval

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