Clinical genetics and public policies: how should rare diseases be managed?

The implementation of a specific policy for rare diseases in the Brazilian Unified Health System presents challenges in terms of its rationale. Recognizing the importance of rarity in the context of public health means understanding genetics as one of the dimensions of disease and accepting thatBrazilis undergoing a period of transition in health indicators. Although most rare diseases lack pharmacological treatment and genetic counseling constitutes the best strategy for their prevention, the cost of “orphan drugs” and their consequent lack of cost-effectiveness are still claimed as hurdles to the implementation of public policies in this field. Epidemiological aspects should not be used as isolated criteria for prioritization in public policies

Clinical genetics and public policies : how should rare diseases be managed?

The implementation of a specific policy for rare diseases in the Brazilian Unified Health System presents challenges in terms of its rationale. Recognizing the importance of rarity in the context of public health means understanding genetics as one of the dimensions of disease and accepting that Brazil is undergoing a period of transition in health indicators. Although most rare diseases lack pharmacological treatment and genetic counseling constitutes the best strategy for their prevention, the cost of “orphan drugs” and their consequent lack of cost-effectiveness are still claimed as hurdles to the implementation of public policies in this field. Epidemiological aspects should not be used as isolated criteria for prioritization in public policies

AS VIOLAÇÕES SOFRIDAS PELO POVO KRENAK E O DANO CAUSADO AO PROJETO DE VIDA

Este artigo versa sobre as violações cometidas pelo Regime Militar ao povo Krenak e o possível dano ao projeto de vida. Conceituando esta espécie de dano como violação de direitos humanos, irá discorrer sobre a criação da Guarda Rural Indígena (GRIN), a instalação do presídio indígena em suas terras chamado “Reformatório Krenak” e o deslocamento forçado para outro centro de detenção indígena, denominado fazenda Guarani, no município de Carmésia/MG. Procurará se demonstrar que as ações cometidas a este povo, pelo Estado Brasileiro, devem ser reparadas também por atingir o modo e a expectativa de vida que possuíam a época. Para melhor identificar estes danos causados, o trabalho recorrerá à peça inicial da Ação Civil Pública nº 64483-95.2015.4.01.3800, impetrada pelo Ministério Público Federal, que trata das violações sofridas pelos Krenak e o Relatório da Comissão Nacional da Verdade, Volume II. Também se demostrará que a Corte Interamericana de Direitos Humanos já vem entendendo que este tipo de dano deve ser reparado

DIREITO DA ANTIDISCRIMINAÇÃO E DIREITOS DE MINORIAIS: PERSPECTIVAS E MODELOS DE PROTEÇÃO INDIVIDUAL E COLETIVO

O artigo objetiva analisar o desenvolvimento do direito da antidiscriminação e do direito das minorias, considerados na perspectiva dos direitos humanos e em sua inserção neste campo do conhecimento. Cuida-se de pesquisa teórica, mediante o exame da bibliografia pertinente e visando à exploração das compreensões vigentes destas categorias, proporcionando maior familiaridade com o problema. Nessa tarefa, salienta a origem comum, tensões e limites destes dois campos do conhecimento e da técnica jurídica, enquanto concretizações do direito humano e fundamental de igualdade. Procede a uma análise comparativa entre algumas técnicas e as perspectivas empregadas por tais campos jurídicos, concluindo pela necessidade de uma compreensão adequada do conceito de direito coletivo como categoria central para a efetividade do direito antidiscriminatório, enfatizando os modelos individual e grupal de proteção jurídica do direito de igualdade

Clinical genetics and public policies: how should rare diseases be managed?

The implementation of a specific policy for rare diseases in the Brazilian Unified Health System presents challenges in terms of its rationale. Recognizing the importance of rarity in the context of public health means understanding genetics as one of the dimensions of disease and accepting thatBrazilis undergoing a period of transition in health indicators. Although most rare diseases lack pharmacological treatment and genetic counseling constitutes the best strategy for their prevention, the cost of “orphan drugs” and their consequent lack of cost-effectiveness are still claimed as hurdles to the implementation of public policies in this field. Epidemiological aspects should not be used as isolated criteria for prioritization in public policies

External control of fluoridation in public water supply of Canoas/RS

The aim of this study was to evaluate the concentration of fluoride in public water supplies in Canoas/RS. Samples of drinking water were collected in duplicates for eight months on 22 different points grouped into three water treatment plants of the city. The measurement of fluoride concentration was performed using the electrometric method. The analysis of samples collected in the study period showed that there was oscillation in fluoride concentrations in accordance with the sampling months (from 0.185 to 1.605 ppm /L). Of the samples, 96 (54.5%) were inadequate (0.6 ppm 0.9 ppm) as the fluoride concentration. Of inadequate samples, the majority showed concentrations above the maximum acceptable concentration for drinking water standard. There was statistically significant difference among the three water treatment plants regarding the suitability of the fluoride concentration (p 0.001). The large variation in relation to fluoride concentration as well as the high percentage of inadequate samples revealed the need to implement measures of external control to ensure continuous effectiveness of water fluoridation