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.
Highlights
As society creates and defies new scientific and ethical dilemmas in the post-genomic era[1], clinical diagnosis alone – symptoms, physical examination, biochemical and imaging tests – is not sufficient without the concomitant use of genetic tests to identify potentially affected individuals
We argue that Brazil’s underlying socio-ethical, cultural and political economic contexts, as observed both on fieldwork notes and oral life history narratives, influenced the way through which people have been engaging with cancer precision medicine tools and enabling their co-production for a ‘public health genomics’ culture around Brazil’s developing country scenario
Despite having a public health system that is scarce in resources under Brazil’s developing country scenario, the BrasMEN initiative developed a ‘global south’ solution to invest in risky developments such as a cancer precision medicine to tackle a public health issue in a more sustainable and equitable manner than has been established in Euro/North American contexts for Multiple Endocrine Neoplasia Type 2 (MEN2)
Summary
As society creates and defies new scientific and ethical dilemmas in the post-genomic era[1], clinical diagnosis alone – symptoms, physical examination, biochemical and imaging tests – is not sufficient without the concomitant use of genetic tests to identify potentially affected individuals. Continuous research on genes and their signalling pathways inducing inherited diseases expands the understanding of human genetics, and offer unique opportunities for new approaches to prevention, diagnosis and treatment for various forms of illnesses such as cancer[2,3] In this sense, advances in precision medicine promote the development of novel biotechnologies to track altered genes and transform medicine’s modus operandi around treatment, moving from symptomatic to a pre-symptomatic approach for patients’ maximum benefit[3]. The limits to ‘biocitizenship’ have already been outlined at Euro/North American contexts, and according to this evidence, ‘biocitizenship’ and patient ‘empowerment’
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