A divulgação científica sobre células-tronco do cordão umbilical e placentário na imprensa, no cotidiano médico-científico e nos usuários de serviços de saúde privados

Abstract

The public and private storage of umbilical cord blood and placental stem cells has produced extensive debate both in science and press. Private storage has been suggested to families as a source of hope for existing or incurable diseases. On the other hand, public storage is considered a therapeutic alternative to allogenic bone marrow transplantation (a procedure in which a person receives stem cells from a matching donor) in case of blood-related diseases. According to ANVISA (National Health Regulatory Agency) 2003-2014 database of Bancos de Sangue do Cordão Umbilical e Placentário para Uso Autólogo (Umbilical Cord and Placental Blood Banks for Autologous Use), 105.074 units of umbilical cord and placental blood for autologous use were stored by private banks. Of these, 14 units were used- 5 for autologous transplants and 9 for related donors. However, Rede BrasilCord (the BrasilCord Network), which is made up of public banks, has 22.474 units of umbilical cord and placental blood (UCPB) that have been stored since 2001. Of these, 183 units have already been used in allogeneic transplantation. This paper investigates the strains, connections and contrasting views on the regimes of “hope” and “truth” (MOREIRA; PALLADINO, 2005). These regimes mutually organize and are organized by the scientific dissemination of therapeutic use and scientific studies on umbilical cord and placental stem cells. These studies run through both print and specialized media and are equally present in the routine of health care professionals and potential users of private services. The data cover the period from 2000 to 2014 and were collected from four national news websites (Folha de São Paulo, O Estado de São Paulo, O Globo e Jornal do Brasil) and five scientific journals (Ciência Hoje Online, Revista Pesquisa Fapesp, Agência Fapesp, Agência USP de Notícias e Revista ComCiência). A survey of official documents (ordinances, laws, resolutions, ANVISA database of umbilical cord and placental blood banks, brochures and technical notes) was conducted from 2000 to 2016 to analyze the controversy between the regimes of “hope” and “truth”. It was possible to identify that despite the lower number of UCPB stored in public banks, they were more used than the private ones. Besides the survey, a semi- structured interview was conducted with three different groups: users of private services, health care professionals and press professionals. The aim of this interview was to determine how scientific dissemination reaches the aforementioned groups. The survey findings showed the following: (1) the peaks of news report follow the dissemination of official documents. (2) Specialized media channels were not involved in the medical-scientific controversy surrounding private or public storage. (3) The regimes of “hope” and “truth” are evident on news publications and the theme has been spread to several editorial boards. The findings from the interviews showed the following: (1) Contrast between the regimes of “hope” and “truth”. (2) Users of private services have trivial knowledge of the topic and access to information happens through television and websites. (3) Health care workers showed higher strain regarding the regimes of “hope” and “truth”. (4) Press professionals strive to disseminate accurate information and promote public understanding of science. Thus, evidence of the regimes of “hope” and “truth” is seen in this study. Moreover, this study pinpoints the need to broaden the dissemination of transplant and storage of umbilical cord in public banks as they are considered the fourth option for allogeneic hematopoietic cell transplantation and their prompt availability whenever required, unlike bone marrow transplant, in which a donor must be found. Science journalism is acknowledged here ashaving an important role to play in the spread of new biotechnologies for the laypersons who might not have broad access to this type of information and interpretation of scientific knowledge, raising a participative and democratic scientific culture.