RESUMEN
We demonstrate a transnationally situated dialogue as a method to bring ethnographic and historical research in Brazil, East Africa (Kenya, Tanzania and Uganda), India, Russia and Spain into conversation to show three cancer epistemics sites (research, detection, and care access) where the politics of cancer epistemics are at play. First, in the field of research, we show how certain ways of knowing, and certain questions about and interests in cancer, are privileged over others. Using examples from Spain and East Africa, we highlight how a shift towards microbiological and high-technology research has outpriced many more locally grounded research agendas, ignoring questions of industrial and capital accountability in cancer aetiology. Second, we look at ways of making cancer visible, how knowledge is mobilised in cancer detection and screening, where and for whom. We discuss the increased individualisation of risk which is reframing cancer surveillance and therapeutic agendas. Using examples from India, Spain and Brazil, we demonstrate how the epistemics of cancer detection generate discourses of blame and responsibility at the individual level and accentuate existing inequities whilst simultaneously absorbing patients and their families into complex networks of surveillance. Lastly, we examine how the epistemics of cancer implicate the very possibilities of accessing cancer care, shaping care pathways and possibilities for patients. With ethnographic examples from India, Russia and Brazil, we demonstrate how an orientation towards the individual shifts attention away from the commercialisation of healthcare and dominance of logics of profit in therapeutics. Throughout the paper, we point towards what is holding these cancer discourses together and grapple with how the politics of cancer epistemics are at play across the globe, even if they appear to be taking many different forms. Our approach highlights how practices are mirrored in the framing, implementation, detection and care of cancer with far-reaching effects.
RESUMEN
The paper analyses illness experiences of breast cancer in women undergoing treatment at the Hospital of Cancer III of the National Institute of Cancer. It argues that part of the interviewed women's experience was constructed from the interaction between family coexistence and the mobilisation of different cultural meanings of the disease and femininity, negotiating senses for biomedical entities. The study results from a qualitative research of ethnographic inspiration that interviewed women undergoing treatment from breast cancer during 2015. It draws on the accounts to discuss the interaction of society with biomedical entities for the significance of cancer in Brazil between the 1990s and 2010s.
Analisa as experiências de adoecimento por câncer de mama de mulheres em tratamento no Hospital do Câncer III do Instituto Nacional de Câncer, Rio de Janeiro. Argumenta que parte da experiência das mulheres entrevistadas foi construída pela interação entre a convivência familiar e a mobilização de diferentes significados culturais da doença e da feminilidade, negociando sentidos para entidades biomédicas. O estudo resulta de uma pesquisa qualitativa de inspiração etnográfica, que entrevistou mulheres em tratamento de câncer de mama ao longo de 2015. Parte dos depoimentos para discutir a interação da sociedade com as entidades biomédicas para a significação do câncer no Brasil entre as décadas de 1990 e 2010.
Asunto(s)
Neoplasias de la Mama , Antropología Cultural , Brasil , Femenino , Feminidad , Humanos , Investigación CualitativaRESUMEN
Resumo Analisa as experiências de adoecimento por câncer de mama de mulheres em tratamento no Hospital do Câncer III do Instituto Nacional de Câncer, Rio de Janeiro. Argumenta que parte da experiência das mulheres entrevistadas foi construída pela interação entre a convivência familiar e a mobilização de diferentes significados culturais da doença e da feminilidade, negociando sentidos para entidades biomédicas. O estudo resulta de uma pesquisa qualitativa de inspiração etnográfica, que entrevistou mulheres em tratamento de câncer de mama ao longo de 2015. Parte dos depoimentos para discutir a interação da sociedade com as entidades biomédicas para a significação do câncer no Brasil entre as décadas de 1990 e 2010.
Abstract The paper analyses illness experiences of breast cancer in women undergoing treatment at the Hospital of Cancer III of the National Institute of Cancer. It argues that part of the interviewed women's experience was constructed from the interaction between family coexistence and the mobilisation of different cultural meanings of the disease and femininity, negotiating senses for biomedical entities. The study results from a qualitative research of ethnographic inspiration that interviewed women undergoing treatment from breast cancer during 2015. It draws on the accounts to discuss the interaction of society with biomedical entities for the significance of cancer in Brazil between the 1990s and 2010s.
Asunto(s)
Neoplasias de la Mama/historia , Informes de Casos , Clasificaciones en Salud , Antropología Cultural , Brasil , Historia del Siglo XXRESUMEN
This article discusses the different meanings attributed to the right to health in the mobilizations to guarantee care for rare disease patients in Brazil. Since the early 1990s, rare disease patient family associations have been putting agendas to the public authorities, with demands ranging from the recognition of diseases to the development of research and diagnostic tests. The trajectory of the mobilizations to guarantee care for rare disease patients is part of a broader process of social articulation around the possibilities and limits of the Brazilian National Health System. The right to health is at the center of this process, being the Subject of varied debates and interpretations in the political, health, and legal arenas, involving arguments guided by scientific evidence, legal principles, and moral values. We argue that these variations in the directions of the right to health have involved concomitant processes of strengthening networks of rare disease actors and institutions, and of maturing the health care system, both converging towards the establishment of a moral economy of rare disease patients. This moral economy is centered on the idea that the public health relevance of these diseases cannot be identified by epidemiological evidence, but rather by individual and family experience. We used a wide scope of documentation: texts from newspapers and magazines widely circulated in the country, legislative material, publications in specialized journals, and website materials from rare disease patient organizations in Brazil (AU)
Asunto(s)
Humanos , Accesibilidad a los Servicios de Salud/legislación & jurisprudencia , 17627/historia , Enfermedades Raras/economía , Política de Salud , Activismo Político , BrasilRESUMEN
This study discusses actors and institution movements leading to the disclosure in 2014 of Resolution 199 by the Brazilian Ministry of Health, which establishes the National Policy for the Comprehensive Care of Persons with Rare Diseases. Taking as sources the mainstream newspapers, drafts law, and secondary literature on the subject, we begin our analysis in the early 1990s when the first patient associations were created in Brazil - mainly for claiming more funds for research on genetic diseases - and arrive at the late 2010s when negotiations for a national policy are taking place in the National Congress. Resolution 199 is part of an ongoing process and the path towards its disclosure and the complications that followed have given us elements to discuss contemporary aspects of the Brazilian public health. Based on the references of the history of the present time and the social studies of science, we argue that two aspects have been fundamental to creating a national policy: framing different illnesses within the terminology "rare diseases" and the construction of a public perception about the right of health which is guaranteed by the 1988 Brazilian Constitution.
En este trabajo se analizan los movimientos de actores e instituciones que llevaron a la promulgación, en 2014, de la Resolución 199 del Ministerio de Salud de Brasil, que establece la Política Nacional de Atención Integral a las Personas con Enfermedades Raras. Tomando como fuentes los principales periódicos, proyectos de ley y bibliografía secundaria sobre el tema, comenzamos nuestro análisis a principios de la década de 1990 con la creación de las primeras asociaciones de pacientes en Brasil, para reclamar fundamentalmente más fondos para la investigación de enfermedades genéticas, y llegamos a fines de la década de 2010 con las negociaciones para una política nacional. La Resolución 199 es parte de un proceso en curso, en el que el camino hacia la promulgación y las complicaciones posteriores nos dan elementos para discutir aspectos actuales de la salud pública brasileña. Sobre la base de la historia del tiempo presente y los estudios sociales de la ciencia, argumentamos que hay dos aspectos que han sido fundamentales para crear una política nacional: enmarcar diferentes enfermedades en la terminología "enfermedades raras" y la construcción de una percepción pública sobre el derecho a la salud, que se garantiza en la Constitución brasileña de 1988.
Asunto(s)
Enfermedades Genéticas Congénitas , Genética Médica , Política de Salud , Programas Nacionales de Salud , Enfermedades Raras , Brasil , Prestación Integrada de Atención de Salud/historia , Prestación Integrada de Atención de Salud/legislación & jurisprudencia , Enfermedades Genéticas Congénitas/historia , Enfermedades Genéticas Congénitas/terapia , Genética Médica/historia , Política de Salud/economía , Política de Salud/historia , Política de Salud/legislación & jurisprudencia , Historia del Siglo XX , Historia del Siglo XXI , Humanos , Programas Nacionales de Salud/economía , Programas Nacionales de Salud/historia , Programas Nacionales de Salud/legislación & jurisprudencia , Programas Nacionales de Salud/organización & administración , Periódicos como Asunto , Derechos del Paciente , Política , Enfermedades Raras/clasificación , Enfermedades Raras/genética , Enfermedades Raras/historia , Enfermedades Raras/terapia , Grupos de Autoayuda/historia , Grupos de Autoayuda/organización & administración , Terminología como AsuntoRESUMEN
Mammographic screening for breast cancer is a widely used public health approach, but is constantly a subject of controversy. Medical and historical research on this topic has been mainly conducted in Western Europe and North America. In Brazil, screening mammography has been an open topic of discussion and a challenge for health care and public health since the 1970s. Effectively, Brazilian public health agencies never implemented a nationwide population-based screening programme for breast cancer, despite the pressures of many specific groups such as advocacy associations and the implementation of local programmes. This article examines the complex process of incorporating mammography as a diagnostic tool and the debates towards implementing screening programmes in Brazil. We argue that debates about screening for breast malignancies, especially those conducted in the late twentieth and early twenty-first centuries, took place in a context of change and uncertainty in the Brazilian health field. These discussions were strongly affected both by tensions between the public and the private health care sectors during the formative period of a new Brazilian health system, and by the growing role of civil society actors. Our study investigates these tensions and their consequences. We use several medical sources that discussed the topic in Brazil, mainly specialised leading oncology journals published between 1950 and 2017, medical congress reports for the same period, books and theses, institutional documents and oral testimonies of health professionals, patients and associations collected in the framework of the 'The History of Cancer' project from the Oswaldo Cruz Foundation and Brazilian National Cancer Institute.
Asunto(s)
Neoplasias de la Mama/historia , Detección Precoz del Cáncer/historia , Mamografía/historia , Brasil , Neoplasias de la Mama/diagnóstico por imagen , Atención a la Salud/historia , Femenino , Historia del Siglo XX , Historia del Siglo XXI , Humanos , Mamografía/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Salud Pública/historia , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/historiaRESUMEN
Resumo Neste artigo, discutimos os caminhos que levaram o câncer de mama ao estatuto de grande problema de saúde pública e tópico constante de debates pela sociedade brasileira. Tendo como marco temporal o século XX, traçamos um amplo perfil das transformações nas abordagens ao câncer de mama no Brasil com base no desenvolvimento de novas tecnologias diagnósticas e terapêuticas e no jogo de forças entre diferentes grupos relacionados à sua implantação. Mostramos como, a partir do desenvolvimento de tecnologias médicas de diagnóstico precoce, deu-se mais atenção ao processo de prevenção à doença, implicando controvérsias sobre a melhor forma de implementar as práticas de prevenção. A análise se caracteriza como um estudo qualitativo de abordagem histórica, dialogando com trabalhos da história da medicina e dos estudos sociais das ciências. A investigação é pautada em fontes médicas (revistas especializadas, anais de congressos, teses, manuais); documentos institucionais e legislativos; jornais e revistas leigas; e um conjunto de entrevistas realizadas pelo projeto "História do Câncer: Atores, Cenários e Políticas Públicas" (Fundação Oswaldo Cruz/Instituto Nacional de Câncer).
Abstract This study discusses the trajectory of breast cancer to becoming a major public health issue and constant topic of discussions in Brazilian society. We trace an extensive profile on the changes in approach concerning breast cancer in Brazil, considering the development of new diagnostic and therapeutic technologies and the power struggles between the different groups involved in their implementation. We show that with new technologies major attention was directed to the prevention of breast cancer, which led to controversies on how it would be done. The analysis is framed as a qualitative study with a historical approach based on studies of medical history and the Social Sciences. The data were collected from medical sources (specialized journals, congress reports, medical thesis and books); institutional and legislative documents; magazines and newspapers; and a corpus of interviews made by the project "History of Cancer: Actors, Scenarios and Public Policies" (Fiocruz/INCA).
Asunto(s)
Humanos , Masculino , Femenino , Cirugía General , Terapéutica , Neoplasias de la Mama/historia , Neoplasias de la Mama/prevención & control , Neoplasias de la Mama/diagnóstico por imagen , Tamizaje Masivo , Salud Pública , Diagnóstico , Acceso a Medicamentos Esenciales y Tecnologías SanitariasRESUMEN
This article addresses the shaping of cancer as a relevant medical and social problem in the Brazilian state of Ceará from 1940 to 1954. While this disease initially garnered little importance on the local medical and health agenda, and was considered a problem for philanthropy, a group of physicians and allies brought cancer to the public health agenda and led to the Campaign Against Cancer in 1954. This group's ability to unite internal and external allies with a broader reach portrayed cancer as a relevant medical and social problem in Ceará. We demonstrate this new portrayal in medical articles, institutional documents, biographies, newspapers, and other documents produced on and by the characters involved with anticancer activities in Ceará.
RESUMEN
Resumo Analisa a conformação do câncer em problema médico-social relevante no Ceará, entre 1940 e 1954. Nos anos 1940, a doença possuía pouca importância na agenda médica e sanitária local, sendo considerada um problema de filantropia. A partir da ação de um grupo de médicos e seus aliados, o câncer foi posto na pauta dos médicos e da saúde pública, levando à Campanha Contra o Câncer, em 1954. Argumentamos que o enquadramento do câncer como um problema médico-social relevante no Ceará esteve ligado à capacidade desses médicos em agregar aliados internos e externos para ampliar o alcance de suas agendas. Utilizamos artigos médicos, documentos institucionais, biografias, jornais e outros documentos produzidos sobre/pelos personagens envolvidos com as ações anticâncer no Ceará.
Abstract This article addresses the shaping of cancer as a relevant medical and social problem in the Brazilian state of Ceará from 1940 to 1954. While this disease initially garnered little importance on the local medical and health agenda, and was considered a problem for philanthropy, a group of physicians and allies brought cancer to the public health agenda and led to the Campaign Against Cancer in 1954. This group's ability to unite internal and external allies with a broader reach portrayed cancer as a relevant medical and social problem in Ceará. We demonstrate this new portrayal in medical articles, institutional documents, biographies, newspapers, and other documents produced on and by the characters involved with anticancer activities in Ceará.
Asunto(s)
Humanos , Historia del Siglo XX , Salud Pública , Medicina , Neoplasias , BrasilRESUMEN
Introdução: O presente artigo analisa como a prevenção ao câncer de mama foi comunicada à população pelo Jornal O Globo no século XX tomando como ponto de inflexão a incorporação da mamografia na prática médica brasileira. A forma como esse veículo apresenta a dimensão da prevenção participa na decisão das mulheres a se submeterem ou não ao rastreamento e de buscar mecanismos para preveni-la. Objetivo: Debater a forma pela qual a mídia impressa, veículo de ampla circulação, apresenta conteúdos sobre a prevenção ao câncer de mama. Método: Trata-se de um estudo qualitativo de base histórica que utilizou a Análise de Conteúdo como ferramenta para tratamento dos dados. Os critérios de inclusão para constituição do painel amostral foram o artigo ou a coluna terem sido publicados no século XX, e conter elementos que tratassem da prevenção do câncer de mama. Resultados: Foram recuperados 1.007 recortes entre propagandas e anúncios, notas, colunas e reportagens acerca do câncer de mama. O corpus final de análise possui 76 recortes categorizados como prevenção e diagnóstico precoce. Conclusão: A noção de prevenção do câncer de mama é transversal a todas as categorias emersas e se confunde com a noção de diagnóstico precoce, o que retrata controvérsia entre os conceitos de prevenção primária e secundária, informando de forma assídua e erroneamente os leitores sobre fatores de risco e detecção precoce da doença.
Introduction: This article discusses how the prevention of breast cancer was reported to the population by the newspaper O Globo in the 20th Century, taking as an inflection point the incorporation of mammography into Brazilian medical practice. The way in which this vehicle presents the dimension of prevention participates the decision of women to undergo or not screening tests and to seek mechanisms to prevent this condition. Objective: Discuss the way in which the print media, a vehicle of wide circulation, produces and presents contents on the prevention of breast cancer. Method: This is a qualitative, historical-based, study that used Content Analysis as a tool for data processing. The inclusion criteria for constituting the sample panel was the article or column has been published in the 20th century and contain elements that dealt with the prevention of breast cancer. Results: 1,007 clippings published over the course of the 20th century have been retrieved between advertisements, notes, columns and reports on breast cancer, the final corpus of analysis has 76 clippings categorized as prevention and early diagnosis. Conclusion: The notion of breast cancer prevention is transversal to all emerging categories and there is a confusion with the notion of early diagnosis, which portrays a controversy between the concepts of primary and secondary prevention, informing misleading and assiduously the readers about risk factors and early detection of the disease.
Introducción: El presente artículo analiza cómo la prevención del cáncer de mama fue comunicada a la población por el diario O Globo en el siglo XX, tomando como punto de inflexión la incorporación de la mamografía en la práctica médica brasileña. La forma como este vehículo realiza la presentación de la dimensión de la prevención participa en la decisión de las mujeres a someterse o no a exámenes de rastreo y en su decisión de buscar mecanismos de prevención. Objetivo: Debatir la forma en que los medios impresos, vehículos de amplia circulación, produce y presentan contenidos sobre la prevención del cáncer de mama. Método: Se trata de un estudio cualitativo de base histórica que utilizó el Análisis de Contenido como herramienta para el tratamiento de los datos. El criterio de inclusión para la constitución del panel muestral fue el artículo o columna haber sido publicado en el siglo XX y contener elementos que tratase de la prevención del cáncer de mama. Resultados: Se recuperaron 1.007 recortes publicados entre propagandas y anuncios, notas, columnas y reportajes acerca del cáncer de mama. El corpus final de análisis posee 76 recortes categorizados como prevención e diagnóstico precoz. Conclusión: La noción de prevención del cáncer de mama es transversal a todas las categorías emergentes y se confunde con la noción de diagnóstico precoz, lo que retrata controversia entre los conceptos de prevención primaria y secundaria, informando muchas veces y erróneamente los lectores sobre factores de riesgo y detección precoz de la enfermedad.
Asunto(s)
Historia del Siglo XX , Neoplasias de la Mama , Detección Precoz del Cáncer , Medios de Comunicación de Masas , Prevención PrimariaRESUMEN
Esta dissertação analisa o processo de organização das primeiras ações sistemáticas de controle do câncer e de estruturação da cancerologia no Ceará, entre os anos de 1940 e 1960. O objetivo é discutir a relação entre as ações de um grupo de médicos com a sistematização das ações anticâncer no estado, ressaltando as suas articulações com aliados internos e externos à classe médica. Nesse sentido, investiguei a documentação referente à trajetória da medicina e da saúde pública no Ceará, com destaque para a publicação Ceará Médico, material bibliográfico e biográfico produzido por esses personagens sobre o/no período estudado e outras fontes referentes à trajetória do controle do câncer, como decretos - leis, relatórios de instituições, atas de reuniões, discursos proferidos pelos médicos, e teses defendidas na Faculdade de Medicina do Ceará. Argumento que a mobilização dos cancerologistas pelo controle do câncer e pela organização de sua prática consistia em uma agenda de grupo, com o objetivo de definir um lugar de atuação para a cancerologia no Ceará e de projetar a iniciativa local como parte das redes em conformação no Brasil no período, integrando-se à campanha nacional contra o câncer. A conclusão deste trabalho é que a iniciativa dos cancerologistas foi capaz de alterar o estatuto da doença de uma agenda de grupo para um problema médico e social relevante, ainda que distante de ser uma prioridade da saúde pública estadual no fim dos anos 1950. (AU)