Ciência & Saúde Coletiva
Print version ISSN 1413-8123
DINIZ, Debora and GUEDES, Cristiano. Genetic information in the written media: sickle cell anemia at issue. Ciênc. saúde coletiva [online]. 2006, vol.11, n.4, pp. 1055-1062. ISSN 1413-8123. http://dx.doi.org/10.1590/S1413-81232006000400026.
This article examines the strategies used by the media to approach and disseminate information about the most prevalent genetic disease in Brazil, sickle cell anemia. In this investigation we analyzed all articles on this matter published between 1998 and 2002 in two newspapers: A Tarde (State of Bahia, 41 articles) and Folha de S. Paulo (State of São Paulo, 25 articles). We selected four variables: prevention, risk awareness, genetic counseling and the racial dimension of the disease. The results revealed that the national media were giving strong emphasis to prevention. The topic genetic prevention poses a number of ethical dilemmas, particularly in Brazil where selective abortion is illegal. Consequently, the discourse of the media concentrates on pre-conception counseling. The media also appeal to risk groups and carriers to seek for identification of their condition and specialized care. Strong emphasis is further given to the idea that informed people can help to prevent the disease. The subtle line between genetic prevention and recognizing the individual right to reproductive autonomy represents an ethical challenge not only for every public health initiative but also for the media.
Keywords : Sickle cell anemia; Genetic counseling; Media; Bioethics.