[Sickle Cell Anaemia: a Brazilian Problem. A bioethical approach to the new genetics].
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.
Diniz
Debora
D
ANIS: Instituto de Bioética, Direitos Humanos e Gênero, Brasília, DF, 70673-970, Brasil. d.diniz@anis.org.br
Guedes
Cristiano
C
D000755:Anemia, Sickle Cell / Q000235:genetics* / Q000517:prevention & control; D001938:Brazil; D005817:Genetic Counseling / Q000941:ethics* / Q000379:methods; D006077:Government Agencies; D006801:Humans; D010174:Pamphlets; D010353:Patient Education as Topic; D011640:Public Policy