The Tyranny of Diagnosis: Specific Entities and Individual Experience
Abstract
The articulation and acceptance of specific disease entities constitute one of the most important intellectual and cultural events of the past two centuries. This notion is central to how we organize health care delivery, think about ourselves, debate and formulate social policy, and define and manage deviance. Diagnosis is indispensable to linking specific disease concepts with doctor and patient and the social and economic institutions shaping such clinical interactions, Disease is a social entity, not an array of ideal types. The history of medicine is partly the story of how disease entities have become social entities, accumulating the flesh of diagnostic and therapeutic practice, social expectation, and bureaucratic reification. Despite criticism of reductionist medicine in the West and less focus on disease entities and mechanisms, our social response still depends on this concept of sickness. But this concept can no longer remain invisible if we are to understand contemporary medicine as both a social and a technological system.
... Diagnosis is the foundation of the present-time scientific medicine. In his seminal text, « The Tyranny of Diagnosis », the historian of medicine Charles Rosenberg explained how the 19th century « diagnostic revolution » in medicine not only radically modified the patients' trajectories and experiences and reshaped clinical care and the structure of hospitals, but also had broad societal consequences in areas such as labor laws, social security, insurance, or public health (Rosenberg, 2002). When medicine became « bureaucratized », which is dependent in the main on state, and health insurance funding, diagnosis became the organizing principle of modern healing enterprise. ...
... Despite the initial doubts about whether the Zika virus was responsible for the rise in frequency of anomalies in newborn babies, in mid-2016 there was a broad consensus among Brazilian and international experts that this indeed was the case: Zika virus was the cause of severe brain anomalies of the newborn. By contrast, despite a great number of Brazilian and international studies, it was difficult to assess how many pregnant women were infected with the Zika virus in Brazil in 2015 and 2016 and to provide a reliable estimate of the probability that such an infection will lead to birth to an impaired child (Koopmans et al, 2019 22 Some experts argue that in the absence of specific diagnostic signs, long-term Covid is a (subjective) illness, but not an (objective) disease (on the difference between illness and diseases see, e.g., Kleinman, 1988;Rosenberg, 2002). Still, because a great number of people were affected by long Covid / post Covid condition, the phenomenon attracted considerable interest from clinicians and epidemiologists. ...
Dans sa présentation de l'atelier “Le déluge des données” Theodore Porter a expliqué que l'obstacle principal a la fusion des donnes médicaux des sources diverses est leur l'hétérogénéité : « toutefois il est possible de uniformiser des donnes a travers une régulation plus stricte. » L'étude de l'épidémie de Zika au Brésil (2015-2017) indique qu'une telle uniformisation peut être avant tout un problème politique. Zika est une maladie relativement bénigne, mais elle peut induire des malformations cérébrales sévères du fétus. La collection des données sur la prévalence de l'infection par le virus de Zika dans la population générale, et les risques d'une telle infection pour les femmes enceintes a été handicapée par l'absence des tests capables de détecter une infection et la difficulté de homogénéiser le diagnostic de syndrome congénital de Zika chez le nouveau-né. En principe ces problèmes ont pu être surmontes grâce au perfectionnement des tests diagnostiques et une régulation plus stricte. Toutefois, la diminution de la prévalence du Zika, couple avec l'observation que le syndrome congénital de Zika touche avant tous les populations défavorises dans les pays en voie de développement, a réduit considérablement les incitations d'investir dans l'homogénéisation des données sur cette condition. Dix années après le debout de l'épidémie de Zika au Brésil des informations essentielles sur cette épidémie manquent toujours.
... Many researchers have examined the expanding domain of health, medicine, and illness (e.g., Abbott, 1988;Foucault, 1973;Freidson, 1988;Rose, 2007;Rosenberg, 2002). In this paper, we will focus explicitly on theories of medicalization, biomedicalization, and pharmaceuticalization. ...
Medicalization is an important theory that has been subject to numerous debates. Drawing on three varied datasets, we forward a relational approach to medicalization that responds to critiques while aiming to reinvigorate the theory with new concepts and questions. In contrast to prior process-based work, our relational approach argues that medicalization is best understood as an action or activity undertaken by specific groups or actors. We further suggest that unequal relations characterize medicalization. Specifically, we argue that 1) groups or actors receive a benefit from participating in medicalization, which we call the medicalizing dividend and, 2) an actor/group occupies a hegemonic position in medicalizing relations, reaping the largest dividend and constraining other actors. While we assert that pharmaceutical companies are currently hegemonic, we argue that their hegemony is not indefinite. We discuss how our approach facilitates links between medicalization and other theories, while outlining future steps for medicalization research.
... Dejando de lado que ciertos padecimientos se presentan como asintomáticos, la enfermedad en sí misma es una experiencia individual que varía dependiendo de las características fisiológicas y sociales de cada individuo (Rosenberg, 2002). Por ejemplo, existe evidencia que demuestra cómo las mujeres manejan mejor el dolor que los hombres (Gutiérrez y Gutiérrez, 2012). ...
Resumen La respuesta inflamatoria es un fenómeno inmunológico fundamental que se genera tras la infección o señales de daño en el organismo. En este proceso, participan activamente múltiples citocinas, moléculas que, por su pleiotropismo, no solo coordinan respuestas inmunitarias, sino que también regulan funciones neuronales cruciales que inciden en el comportamiento de los organismos. Los cambios comportamentales asociados a la inflamación son colectivamente denominados como "conducta de enfermedad". Esta surge como una respuesta adaptativa y homeostática al entorno e incluye síntomas como somnolencia, cambio en la motivación, las emociones e incluso, aislamiento social. Las alteraciones en el comportamiento alimentario van desde modificaciones en el apetito y en el placer asociado a la ingesta de alimentos, hasta afectaciones en los sentidos del gusto y del olfato. La inflamación aguda o crónica puede favorecer complicaciones graves como malnutrición, incrementar la incidencia de enfermedades y en casos severos, llevar a la muerte. Esta revisión integra evidencia tanto básica como clínica sobre cómo la conducta de enfermedad se relaciona con la respuesta inflamatoria y juega un papel crucial en el mantenimiento de la homeostasis, además se presentan los mecanismos por los que los mediadores inflamatorios inciden en el comportamiento alimentario de los organismos. Palabras clave: inflamación, conducta de enfermedad, comportamiento alimentario, citocinas. Abstract The inflammatory response is a fundamental immunological phenomenon that occurs after infection or damage signals in an individual's organism. This process is mediated by multiple cytokines, molecules that are pleiotropic, and do not only coordinate immune responses but also influence crucial neural functions that modulate behavior. The behavioral changes associated with inflammation are collectively referred to as "sickness behavior". It represents an adaptive and homeostatic response to the environment and includes symptoms such as lethargy, changes in motivation and emotions, and even social withdrawal. Alterations in eating behavior range from changes in appetite and pleasure associated with food intake, to sensory disturbances. Both acute and chronic inflammation can lead to severe complications such as malnutrition, increased incidence of diseases and in severe cases, death. This review presents both basic and clinical evidence on how sickness behavior, in conjunction with the inflammatory response, plays a crucial role in maintaining homeostasis; the mechanisms by which inflammatory mediators modulate eating behavior are also analyzed.
... Dejando de lado que ciertos padecimientos se presentan como asintomáticos, la enfermedad en sí misma es una experiencia individual que varía dependiendo de las características fisiológicas y sociales de cada individuo (Rosenberg, 2002). Por ejemplo, existe evidencia que demuestra cómo las mujeres manejan mejor el dolor que los hombres (Gutiérrez y Gutiérrez, 2012). ...
La respuesta inflamatoria es un fenómeno inmunológico fundamental que se genera tras la infección o señales de daño en el organismo. En este proceso, participan activamente múltiples citocinas, moléculas que, por su pleiotropismo, no solo coordinan respuestas inmunitarias, sino que también regulan funciones neuronales cruciales que inciden en el comportamiento de los organismos. Los cambios comportamentales asociados a la inflamación son colectivamente denominados como “conducta de enfermedad”. Esta surge como una respuesta adaptativa y homeostática al entorno e incluye síntomas como somnolencia, cambio en la motivación, las emociones e incluso, aislamiento social. Las alteraciones en el comportamiento alimentario van desde modificaciones en el apetito y en el placer asociado a la ingesta de alimentos, hasta afectaciones en los sentidos del gusto y del olfato. La inflamación aguda o crónica puede favorecer complicaciones graves como malnutrición, incrementar la incidencia de enfermedades y en casos severos, llevar a la muerte. Esta revisión integra evidencia tanto básica como clínica sobre cómo la conducta de enfermedad se relaciona con la respuesta inflamatoria y juega un papel crucial en el mantenimiento de la homeostasis, además se presentan los mecanismos por los que los mediadores inflamatorios inciden en el comportamiento alimentario de los organismos.
... The internalist sources encompass a broader range of non-empirical factors influencing medical judgment (Heyting 1930). Individual clinical experience plays a significant role, incorporating knowledge gained from repeated exposure to similar cases, pattern recognition and intuitive decision-making confidence (Rosenberg, 2002;Fields et al., 2024). This category also includes collective medical knowledge, which is derived from discussions among practitioners, expert consensus and the collective wisdom of the medical community (Monteiro et al., 2020). ...
Medical decision-making relies on scientific data to ensure accurate diagnoses and effective treatments. However, in many real-world scenarios, medical data may be incomplete, unreliable or conflicting, leaving clinicians with significant uncertainty. We propose a pragmatic and structured approach to medical judgment when sufficient empirical evidence is unavailable. We build a heuristic model that integrates multiple sources of knowledge-including evidence-based medicine levels, expert consensus, individual clinical experience, logical reasoning and cognitive biases-to derive a quantifiable degree of belief in a given treatment decision. Each source is assigned a weighted value and their cumulative score determines whether a proposed medical intervention should be accepted or rejected. Unlike traditional Bayesian models, which rely on probabilistic updates, our method prioritizes pragmatic decision-making through an aggregation of both statistical and non-statistical evidence. Our approach integrates both subjective and collective knowledge, emphasizing the central role of clinical expertise and contextual factors in medical practice when evidence-based medicine is insufficient. Through a hypothetical case study on antibiotic administration, we illustrate the practical application of our model. We conclude that our heuristic belief-aggregation model, by formalizing the weighting of diverse epistemic sources-including pragmatic reasoning-enhances decision-making in ambiguous medical contexts where conventional empirical validation is unavailable.
This wife’s reaction to her husband being referred to the memory clinic reflects the paradox of a diagnosis: the possibilities for a sense of control, however fleeting, that comes from being offered reasons and explanations for a set of symptoms and behaviours; while also sitting alongside the fears, anxieties and essential unknowns regarding what the future holds in light of hearing the words, ‘you have Alzheimer’s disease’: a degree of worry that may cause you to choose not to hear them at all. The moments in which these paradoxical interests and concerns meet are often during assessments and consultations that occur in the memory clinic, where patients, families and clinicians navigate the sticky terrain of diagnosis and prognosis. This process requires connections to be made between the label (the diagnosis), the presenting set of difficulties or challenges, and the meanings associated with them for individuals, families and clinicians.
This chapter come to grips with diseases, injuries, and impairments as well as with mental disorders. An attempt is made to define those conditions, how they are being construed and some of the features, which constitute them, though most of them are provisional conventions. Diseases are clusters of signs and symptoms. An important distinction is being made between mere manifestational or purely observational disorders, and single-criterion, usually causal disorders, i.e. disorders defined by their causes. Mental disorders differ from so-called physical diseases in the sense that their limits are broader than those of the affected body. Considering a given disease each patient shares characteristics with many but not all the others. The categories of diseases are neither mutually exclusive, not jointly exhaustive and there are neither necessary, nor sufficient conditions for belonging to those classifications. What’s more, what distinguishes physical from psychological medicine is not some ontological difference between body and mind, but that we grasp mental disorders in terms of reasons rather than causes, through a dialogue with the patient. The term disease intends to refer to a provisional, conventional, useful, and discrete pattern of organic or mental, statistically recurring pathologic processes or states, undergone by an individual, acknowledged by medical science, and which has variable degrees of severity, namely intrinsic suffering, incapacity and/or mortality. The need for medical intervention is constitutive of the concept of disease. Diseases have known or unknown causes, and a natural history, and they are intended to be mutually exclusive. Diseases embody a need for prevention, remedy, or appropriate care. Diseases are neither natural kinds, nor social constructs, inasmuch as they are provisional, shifting, and conventional medical constructs. Ill persons are grouped into overlapping categories, which provide a whole spectrum coming in all grades of severity and not a dichotomy, and that are believed to have utility in the management of their illness and in the circumstances that led to it.
How does a compound become a drug, and how do we decide for whom the drug is intended? Building a history of modafinil, this article examines how classification and serendipity affect drug development. We explore how mental health categories interact with drug development by tracing: how compound CRL40,476 was inadvertently created while exploring other compounds, and then became a focal point for development efforts; and how it secured Schedule IV status (low potential for abuse), orphan drug status (for niche markets), and then blockbuster drug status (>$1bn in annual sales). Classification of modafinil and its uses were negotiated under conditions of uncertainty, requiring substantial efforts to align interests across a wide array of institutions. We highlight these contingencies to show the considerable efforts that go into finding, and creating, markets for drug development. Taking these efforts for granted may confuse invention with innovation and is likely to lead to understatement of the costs and choices involved in drug development, particularly where mental health categories are concerned.
The therapeutic alliance is central to occupational rehabilitation, particularly for immigrant workers who face unique challenges of migration and of social and occupational integration. This study explores the development and maintenance of this alliance between immigrant workers with compensated work injuries and their care providers during work rehabilitation. Using ethnography, semi-structured interviews, and focus groups, the qualitative case study involved 7 injured immigrant workers and their interdisciplinary clinical team. The study identified several factors that weakened the alliance, including administrative complexity, conflicting views on pain and disability, cultural stereotypes, and interorganizational communication issues. Many of these challenges were systemic and structural, occurring outside the clinic, complicating the rehabilitation process, and potentially prolonging the duration of disability. This paper discusses these systemic issues and their implications for the rehabilitation of immigrant workers.
Book synopsis: This book investigates the specific conception and descent of a language of 'degeneration' from 1848–1918, with particular reference to France, Italy and England. Daniel Pick shows how in the refraction and wake of evolution and naturalism, new images and theories of atavism, 'degenerescence' and socio-biological decline emerged in European culture and politics. He indicates the wide cultural and political importance of the idea of degeneration, whilst showing that the notion could mean different things at different times in different places.
This book discusses what makes a person crazy. For many mental health professionals, the DSM is an indispensable diagnostic tool, and as the standard reference for psychiatrists and other psychotherapists, it has had an inestimable influence on the way we view other human beings. What goes in it, and what stays out, is of monumental importance.
This book also discusses how things have taken a strange turn. The fight is no longer about who escapes DSM labeling, but rather, how a person can qualify for a diagnosis. Now mental health professionals must label their clients as pathological in order for them to be reimbursed by their insurance companies. This disturbing trend toward making us crazy when we are simply grappling with everyday concerns has even worse public implications.
The authors also argue that the DSM is not the scientifically based reference work it purports to be, but rather a collection of current phobias and popular mores. (PsycINFO Database Record (c) 2012 APA, all rights reserved)