| Full text | |
| Author(s): |
Maria Sharmila Alina de Sousa
;
Dante Marcello Claramonte Gallian
[2]
;
Rui Monteiro de Barros Maciel
[3]
Total Authors: 3
|
| Document type: | Journal article |
| Source: | Saúde debate; v. 43, p. 114-132, 2020-02-10. |
| Abstract | |
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. (AU) | |
| FAPESP's process: | 12/21942-1 - Perceptions and attitudes of patients, relatives, health professionals and regulators on bioethical issues in Brazil and the United Kingdom: the case study of the familial medullary thyroid carcinoma |
| Grantee: | Maria Sharmila Alina de Sousa |
| Support Opportunities: | Scholarships abroad - Research Internship - Doctorate |