Anemia Falciforme: Um Problema Nosso. Uma abordagem bioética sobre a nova genética

Abstract

This article analyzes one of the educational initiatives of the Brazilian Ministry of Health on hemoglobinopathies: the leaflet entitled Sickle Cell Anaemia: A Brazilian Problem. The purpose is to discuss the moral values associated with initiatives in genetics education, and the case study focuses on public policies related to sickle cell anaemia in Brazil. The analysis shows that the topics in the leaflets fluctuate between disease prevention policies and human rights protection, a basic characteristic of the new genetics. In addition, the leaflet s excessive biomedical information hinders understanding by lay readers. The results are analyzed in the light of the contemporary bioethical debate on the new genetics.

Sexuality and sickle cell anemia

“…One publication ( 1) states that SCA is found in all social classes including class A. In this study though, most interviewees were in socioeconomic class C, which may be explained by the fact that this study was carried out in a government hospital and that SCA is more prevalent in people with lower socioeconomic conditions due to the history of SCA in Brazil with hemoglobin S arriving with the slave trade ( 17, 19) .…”

“…The clinical manifestations of sickle cell anemia (SCA), a chronic disease, occur within the first year after birth and extend throughout life with great variability of symptoms ( 1) . The most frequent clinical problem is painful vaso-occlusive events ( 2) ; pain is a constant in the lives of adults ( 3) .…”

Newborn screening program for hemoglobinopathies in Rio de Janeiro, Brazil

“…A Jamaican study reported a mortality rate of 20% during the first 10 years of life of children with SCD that had not been diagnosed in the neonatal period. In Brazil, up to 25% of children with SCD died during the first 5 years of life . Moreover, these studies indicated that the main causes of death included acute infections by encapsulated microorganisms and splenic sequestration.…”

O autocuidado na doenca falciforme

“…4,5 Em virtude do desconhecimento, a mulher, principalmente, acha que sua doença é impeditiva da gravidez. Portanto, em virtude destas questões, o direito de cidadania de constituir família pode ficar extremamente prejudicado.…”

“…Deve-se respeitar a autonomia, privacidade, a justiça e a igualdade. 3,4,5 O resultado destas estratégias é o adulto vivendo o seu direito pleno de cidadania de constituir família e seu direito reprodutivo atendido.…”