From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system

Autor: Maria Sharmila Alina de Sousa, Dante Marcello Claramonte Gallian, Rui Monteiro de Barros Maciel
Jazyk: English<br />Spanish; Castilian<br />Portuguese
Rok vydání: 2020
Předmět:
Zdroj: Saúde em Debate, Vol 43, Iss spe2, Pp 114-132 (2020)
Druh dokumentu: article
ISSN: 2358-2898
0103-1104
DOI: 10.1590/0103-11042019s209
Popis: ABSTRACT As biotechnology innovations move from the bench to the bedside and, recently, also to the Internet, a myriad of emanating challenges and potentials may rise under distinct sociocultural and political economic contexts. Using a grounded-theory-inspired case study focused on the Brazilian research consortium for Medullary Endocrine Neoplasia type 2 (BrasMEN) – an inherited syndrome where genetic tests define cost-effective interventions – we outline facilitators and barriers to both development and implementation of a ‘public health genomics’ strategy under a developing country scenario. The study is based on participant observation at three centres and interviews with all who might hold an interest in MEN2 around Brazil. We discuss how a ‘solidarity’-based motivation for individual and collective ‘biocitizenship’ is driving people’s pre-emptive actions for accessing and making personalised healthcare available at Brazil’s Unified Health System (SUS) via the ‘co-production’ of science, technology and the culture for precision medicine – termed Brazil’s ‘hidden’ biomedical innovation system. Given the establishment of BrasMEN as ‘solidarity networks’ – promoting and supporting the cancer precision medicine’s rationale – our data illustrates how a series of new bioethical challenges raise from such engagement with familial cancer genomics under Brazil’s developing country scenario and how this social/soft technology constitute a solution for Euro/North American societies.
Databáze: Directory of Open Access Journals
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