La justicia social en salud y su relación con la enfermedad de Chagas / Social Justice in Health and its Relationship with Chagas Disease

Introducción: El mal de Chagas es una de las enfermedades consideradas como desatendidas, según la Organización Mundial de la Salud, se encuentra dentro del conjunto de las 17 enfermedades que afectan especialmente a personas que viven en los trópicos. Objetivo: Describir el estado investigativo sobre la enfermedad de Chagas en entornos de la justicia social en salud. Métodos: Se realizó una revisión narrativa, que incluyó 21 estudios empíricos sobre justicia social, bioética y enfermedad de Chagas. La búsqueda se realizó en idioma español, inglés y portugués. El procedimiento se desarrolló en cuatro etapas: búsqueda bibliográfica, sistematización de datos, elección de artículos, evaluación final y análisis temático previa codificación abierta. Se excluyeron estudios clínicos y no se tuvo en cuenta la calidad de su metodología para su inclusión. Se revisaron 21 estudios empíricos de Latinoamérica, Estados Unidos y Europa con diferentes diseños cuantitativos, cualitativos y mixtos. La revisión fue realizada sin límite de tiempo, incluyó estudios hasta la fecha en que se realizó la investigación. Conclusiones: Los enfoques multidisciplinarios que incorporan las actividades de atención en salud, condiciones de vida de las poblaciones y estado de salud son herramientas para reducir la incidencia de la enfermedad de Chagas a largo plazo. Esta enfermedad se vincula con experiencias de marginación, pobreza rural con múltiples impedimentos para acceder al sistema de salud, aspectos que están relacionados con la justicia social en salud y la bioética, todos presentes en procesos socioculturales, políticos y económicos que pueden ser analizados desde la salud pública(AU)

Introduction: Chagas disease is one of the conditions considered as "neglected," according to the World Health Organization, is one of the 17 diseases that affect especially people living on the tropics. Objective: To describe the research status concerning Chagas disease in healthcare social justice settings. Methods: A narrative review was carried out, which included 21 empirical studies on social justice, bioethics and Chagas disease. The search was carried out in Spanish, English and Portuguese. The procedure was developed in four stages: bibliographic search, data systematization, article selection, final evaluation and thematic analysis after open coding. Clinical studies were excluded, while the quality of their methodology was not taken into account for their inclusion. Twenty-one empirical studies with different quantitative, qualitative and mixed designs were reviewed, from Latin America, the United States, and Europe. The review was conducted without a time limit and included studies up to the date the research was conducted. Conclusions: Multidisciplinary approaches that involve healthcare activities, population living conditions, and health status are tools for reducing the incidence of Chagas disease in the long term. This disease is associated with experiences of marginalization and rural poverty, with multiple impediments for healthcare access, aspects related to social justice in health and bioethics, all present in sociocultural, political and economic processes that can be analyzed from the field of public health(AU)

Cancer: a perspective of human dignity and informed consent from ethics and justice / Cáncer: Una perspectiva de la dignidad humana y el consentimiento informado desde la ética y la justicia

ABSTRACT This article attempts to reflect on the importance of thinking in general about illness and about cancer, from an ethical perspective. This approach reveals the central role of personal dignity and the moral relevance that supports the reasons for respecting people. The ethical values that sustain the practice of medicine must aim at uplifting this dignity and seeking situations of justice, since living in a community expresses intersubjectivity that cannot be truncated by illnesses like cancer. Therefore, situations involving poverty cannot justify the lack of health care, and if such lacks occur, they run counter to ethical awareness in the deepest sense and destroy intersubjectivity. As a result, cancer is suffered as a vital experience, in a framework of lives that are lived and are not simply objects of study; those stricken with cancer are individuals who are denied the human right to health, and undergo the elimination of their dignity, the cancelation of justice, and a death sentence. Society is part of these actions and at the same time, suffers from the disappearance of hope. In this sense, the process of informed consent is used as a tool that encourages dialog and understanding between doctors and patients during proper treatment, on a shared path.(AU)

RESUMEN El artículo pretende hacer una reflexión sobre la importancia de pensar, en general, la enfermedad y, en particular, el cáncer, desde una perspectiva ética. Este acercamiento permite vislumbrar el papel central que tiene la dignidad de las personas y la relevancia moral que apuntalan las razones por las cuales ellas han de ser respetadas. Los valores éticos que sustentan la práctica médica han de apelar a enaltecer dicha dignidad y buscar situaciones de justicia, dado que vivir en comunidad da cuenta de una intersubjetividad que no puede ser truncada por enfermedades como el cáncer. Esto evidencia que las situaciones de pobreza no pueden justificar la carencia de cuidados de salud y que, cuando esto sucede, se contraviene, desde lo más hondo, una conciencia de carácter ético y se rompe la intersubjetividad. El cáncer se sufre en tanto experiencia vital, en un marco de vidas vividas y no simplemente de objetos de estudio; los enfermos son personas a quienes se les niega el derecho humano de la salud, se les borra su dignidad, se cancela la justicia y se les condena a la muerte. La sociedad es parte de estas acciones y a la vez sufre la cancelación de esperanzas. En este sentido, se retoma el proceso del consentimiento informado (CI) como una herramienta que permite el diálogo y la comprensión entre médicos y pacientes en la atención digna, en un camino compartido.(AU)

Correr el riesgo: ¿desventaja social o capacidad? / Run the risk: social disadvantage or capability? / Correr o risco: desvantagem social ou capacidade?

El artículo aborda las nociones de riesgo y aceptabilidad del riesgo desde una perspectiva de justicia social, particularmente, a la luz del enfoque de capacidades propuesto por Amartya Sen. Se argumenta que el riesgo puede ser la expresión de restricciones en las capacidades de los sujetos, partiendo de desventajas sociales que pueden estar normalizadas en su cotidianidad. Por otro lado, puede ser pensado como expresión de capacidad, en aquellos casos en los cuales es aceptado o admitido a través del ejercicio de la libertad, siempre que los sujetos que así se relacionan con el riesgo, lo conciban en consonancia con su idea de una vida buena, cuya construcción implica el desarrollo pleno de la capacidad de agencia. Finalmente, se presentan algunas reflexiones sobre la materia dentro del ámbito de la salud pública.

This article discusses the notions of risk and risk acceptability from a social justice perspective, especially in light of the capability approach proposed by Amartya Sen. The article argues that risk can be the expression of restrictions on subjects' capabilities, deriving from social disadvantages that can be taken for granted in their daily realities. On the other hand, risk can be viewed as an expression of capability in cases where subjects have accepted or admitted the risk through the exercise of freedom, as long as the subjects that relate to the risk do so in keeping with their idea of a good life, the building of which implies the full development of capability for agency. The article concludes with some thoughts on the issues of risk and risk acceptability in the sphere of public health.

O artigo aborda as noções de risco e aceitação do risco desde uma perspectiva da justiça social, especialmente, através do enfoque de capacidades proposto por Amartya Sen. É argumentado que o risco pode ser a expressão de restrições das capacidades dos sujeitos, partindo de desvantagens sociais que podem se encontrar normalizadas no seu cotidiano. Por outro lado, pode ser interpretado como expressão de capacidade, naqueles casos nos quais é aceito ou admitido através do exercício da liberdade, sempre que os sujeitos que assim se relacionam com o arriscado, concebam isso em sintonia com sua ideia de uma vida boa, cuja construção implica o desenvolvimento pleno da capacidade de agência. Finalmente, se apresentam algumas reflexões sobre a matéria dentro do âmbito da saúde pública.

Bioética e saúde global: cuidados primários como instrumento de justiça social / Bioethics and global health: basic health care as an instrument of social justice

Este artigo reflete acerca das desigualdades em saúde em escala global. Para tanto, descreve o percurso da bioética desde seu surgimento até constituir-se como campo do saber, apresenta os múltiplos desafios encontrados, e enfoca nas iniquidades em saúde como exemplo flagrante de injustiça social no domínio da saúde global. É considerado como base de reflexão o modelo utilitarista, que visa o máximo bem para o maior número (a população em escala global), pois é o que mais se aproxima dos objetivos da Organização Mundial da Saúde (OMS). · luz do utilitarismo é também discutida a estratégia da Declaração de Alma-Ata para a implementação universal de cuidados primários de saúde, considerada resposta bioética válida que poderá contribuir para minimizar a injustiça social global. Conclui considerando ser urgente a reflexão bioética sobre esta ameaça à dignidade humana tornando necessárias rápidas intervençães para travar o crescente abismo entre os povos com diferentes níveis de desenvolvimento.

Limites e possibilidades do exercício da autonomia nas práticas terapêuticas de modificação corporal e alteração da identidade sexual / Limits and possibilities to the exercise on autonomy in therapeutic practices of physical modification and sexual identity alteration

As normas brasileiras condicionam o acesso às modificações corporais para alteração da identidade sexual à confirmação do diagnóstico psiquiátrico de transexualismo - transtorno de identidade de gênero ou sexual -, e o acompanhamento psiquiátrico por dois anos para sua realização. O desconforto com o sexo anatômico e o desejo de a pessoa modificar a genitália para a do sexo oposto é o principal critério definidor do diagnóstico de transexualismo. A cirurgia de transgenitalização é considerada etapa final do tratamento, e vem sendo admitida pela instância judicial como condição necessária para a alteração da identidade sexual legal. O artigo discute o conflito moral entre o sujeito transexual e as normas vigentes em relação ao exercício da autonomia individual nas práticas terapêuticas, aplicando as ferramentas da bioética, a partir da análise dos argumentos utilizados pelas instâncias de saúde e judicial sobre o tema, nos artigos, documentos e decisões judiciais nacionais. Observa-se que houve avanços no acesso aos recursos terapêuticos e legais, mas as limitações e restrições ainda impostas ao exercício da autonomia do/a transexual podem ter efeitos negativos para a saúde e os direitos daqueles não considerados pela norma vigente como "verdadeiros transexuais". Os direitos da pessoa transexual à assistência integral à saúde, inclusive sexual, e ao livre desenvolvimento de sua personalidade são infringidos no momento em que a autonomia do paciente não é adequadamente preservada pelas normas vigentes, convertendo-se os direitos humanos num tipo de dever de a pessoa adequar-se à moralidade sexual dominante.

According to current Brazilian health authority policies, one's access to physical modifications to have his/her sexual identity altered is dependent upon an established psychiatric diagnosis of transsexualism - gender or sexual identity disorder - in addition to two years of psychiatric evaluations, in order to have it come to fruition. The discomfort with his/her sexual anatomy and the desire to have his/her genitalia modified is the defining criteria to the diagnosis of transsexualism. Sex reassignment surgery is considered to be the last step of such a treatment, and it is viewed by the Judiciary as a necessary condition to effect change in the legal sexual identity status of the transsexual person. This paper argues the moral conflict between transsexual issues and current health policies related to one's exercise on autonomy with regard to therapeutic practices. Hence, Bioethics tools are applied to the discussion, due to the result obtained from an analysis of the arguments made by the health authorities and judicial systems, on the subject, through articles, documents, and Brazilian court decisions. Regarding therapeutic and legal access, some advances have been made. However, notwithstanding, limitations and restrictions still being imposed regarding the exercise of the autonomy of the transsexual individual, might have a negative impact on the health and legal rights of those not acknowledged by the current norms as "true transsexuals". The rights of the transsexual individual to a comprehensive healthcare assistance system, including sexually related health issues, as well as the right to the free development of his/her personality are infringed, at the very moment when the patient's autonomy is not duly safeguarded by current health policies, thus making human rights look more like a duty, to which the person must adapt to as the dominant sexual morality.

Os novos idosos com aids: sexualidade e desigualdade à luz da bioética / New elderly people with AIDS: sexuality and inequality in the light of bioethics

O objeto dessa pesquisa está focado nos aspectos éticos relacionados ao aumento significativo do número de pessoas com 50 anos e mais contaminadas pelo vírus HIV e/ou vivendo com aids – aumento esse que surge associado a outro fenômeno, também recente, que é o envelhecimento mundial. Essa dissertação se propõe a refletir sobre as questões morais envolvidas neste perfil emergente da epidemia de aids, que é um problema de Saúde Pública - tendo por referência a teoria da justiça (ou eqüidade) - na concepção de desenvolvimento, do economista e filósofo indiano Amartya Sen1 - que tem como parte central nessa abordagem, a análise de privação de liberdades substantivas – que podem estar vinculadas, sob diversas formas, às disposições sociais, políticas públicas e valores prevalecentes na sociedade – limitando escolhas e oportunidades e impedindo assim os idosos de exercer, ponderadamente, sua condição de agente, ou seja, de levar a vida que valorizam.

Public health ethics: towards a research agenda

Public health ethics, as distinct from clinical/medical bioethics, is an emerging field of study in academicsettings. As part of a larger effort to address what the conceptual and content boundaries of this field are, or ought to be, a group at the University of Toronto hosted an international working symposium to discuss and outline a research agenda for public health ethics. The symposium, which took place in May 2002, was organized into four major areas of ethical concern central to public health: individual rights and the common good; risk and precaution; surveillance and regulation; and social justice and global health equity. This paper will provide an overview of some of the main themes and issues that emerged from the key papers that were developed from the symposium and discuss their importance in the emerging field of public health ethics.Significant issues were identified, such as the importance of distinguishing public health ethics from traditional bioethics; the development of the notion of common interests; broad definitions of public health, that include upstream sources of health inequities, and an understanding of the theoretical landscape from which public health ethics has emerged.

Public health and social justice: toward ethical sustainability in healthcare and research

This paper puts forward the notion of ethical sustainability as the manifestation of moral values in public health policy. The most relevant of these values is that of justice, which is interpreted as fairness and qualified according to the type of society: Gemeinschaft, where social relations are ends in themselves, and Gesellschaft, where social relations are means to individual ends. Bioethics, as the dialogical construction of the moral universe and the support ofmoral imagination, is depicted both as a discourse and as a tool for improving the commonwealth.

Natural law, history and politics

The basic philosophical vision and ethical principles of Catholic Natural Law claim universality. Natural Law thinking aspires to objectivity and universality and at the same time is open to the continuing influence fromhistory and politics. The background principles of positive law historically go by the name of Natural Law.Suffering and injustice contribute to a vision both of the structure of human existence and of what we mean byhumane law and ethics. When we confront a cultural crisis, Natural Law, looks not to the past but to the future. Few people today talk of the ethical dimensions of social realities in terms of Natural Law. This is true both in the Church and in the State. In bioethics, the principles rooted in the universal structure of human life have to provide direction and regulations on the playing field of contemporary life and medicine. A liberal Catholic perspective tries to keep in play the universal and the particular aspects of Natural Law reasoning.