Escola Paulista de Medicina
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2019 - Sousa, Gallian e Maciel - De ‘Mim’ para ‘Nós’: solidariedade e biocidadania no sistema brasileiro de inovação em medicina de precisão para o câncer

Artigo completo: https://www.scielosp.org/article/sdeb/2019.v43nspe2/114-132/

ORIGINAL ARTICLE • Saúde debate 43 (spe2) 10 Feb 2020Nov 2019 • https://doi.org/10.1590/0103-11042019S209


From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system
De ‘Mim’ para ‘Nós’: solidariedade e biocidadania no sistema brasileiro de inovação em medicina de precisão para o câncer

Maria Sharmila Alina de Sousa; Dante Marcello Claramonte Gallian; Rui Monteiro de Barros Maciel

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.

KEYWORDS
Science, technology and society; Technological development and innovation projects; Multiple Endocrine Neoplasia Type 2; Solidarity; Brazil

RESUMO
Ao passo em que as inovações biotecnológicas migram da bancada para o leito e, mais recentemente, também para a Internet, uma miríade de desafios e potenciais pode surgir em contextos socioculturais e político-econômicos distintos. Usando um estudo de caso inspirado na teoria embasada em dados focado no consórcio de pesquisa brasileiro sobre a Neoplasia Endócrina Múltipla do Tipo 2 (BrasMEN) – uma síndrome rara em que testes genéticos definem intervenções custo-efetivas – ressaltamos facilitadores e barreiras para ambos desenvolvimento e implementação de uma estratégia de genômica em saúde pública no cenário de um país em desenvolvimento. O estudo foi baseado em observação participante em três centros e entrevistas com todos que podem ter um interesse sobre a MEN2 no Brasil. Discutimos como uma motivação baseada em ‘solidariedade’ para uma ‘biocidadania’ individual e coletiva está impulsionando ações preventivas nas pessoas para acessar e fazer com que cuidados em saúde personalizados sejam disponibilizados no Sistema Único de Saúde (SUS) do Brasil via a ‘coprodução’ de ciência, tecnologia e a cultura para medicina de precisão – denominado sistema de inovação biomédico brasileiro ‘escondido’. Dado o estabelecimento do BrasMEN como ‘redes de solidariedade’ – promovendo e apoiando a abordagem da medicina de precisão em câncer – nossos dados ilustram como uma série de novos desafios bioéticos surgem desse engajamento com a genômica do câncer familiar no cenário de país em desenvolvimento brasileiro e como esta tecnologia social/leve constitui uma solução para sociedades europeias e norte-americanas.

PALAVRAS-CHAVE
Ciência, tecnologia e sociedade; Projetos de desenvolvimento tecnológico e inovação; Neoplasia Endócrina Múltipla Tipo 2; Solidariedade; Brasil

Introduction
As society creates and defies new scientific and ethical dilemmas in the post-genomic era1, 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 cancer2,3. 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 benefit3.

These new ‘technologies of the self’4 – i.e. genetic tests – carry novel challenges and dilemmas posed by a new culture of potentially enhanced health self-management. When physicians and researchers deal with patients and their families as they engage with genetic testing, for either preventive or curative purposes, in distinct sociocultural and political economic contexts in diverse countries5,6, bioethical issues arise under what has been termed as ‘biological citizenship’ (‘biocitizenship’) – to encompass all citizenship projects that have linked people’s beliefs about the intersecting concepts of politics, identity and biology in the era of precision medicine3. This particular kind of ‘biosocial identities’ tend to gather health beliefs and perceptions about shared or collective health (genetic) risks and responsibilities within an ethics of (self) care and empowerment7,8. The limits to ‘biocitizenship’ have already been outlined at Euro/North American contexts, and according to this evidence, ‘biocitizenship’ and patient ‘empowerment’

consists of a more complex cluster of relationships between the molecular and the population. The biological existence of different human beings is politicised through different complementary and competing discourses around medical therapies, choices at the beginning and end of life, public health, environment, migration and border controls, implying a multiple rather than a singular politics of life9(711).

In this sense, there is the need to consider socio-ethical, cultural and political economic facilitators and barriers for both the development and implementation of a precision medicine approach in countries outside Euro/North American contexts. Comprehension of national and local circumstances and demands are necessary to help understand different types of societal motivations for individual and collective citizenship driving pre-emptive actions for accessing and making precision medicine available. For this, we developed a grounded theory-inspired case study that included participant observation in São Paulo, Ceará and Espírito Santo regional centres of the Brazilian Multiple Endocrine Neoplasia Type 2 (MEN2) research consortium (BrasMEN) and conducted first-person interviews with all who hold an interest in a national precision medicine rationale for MEN2 across Brazil, i.e. patients, family members, health professionals, researchers, policy and decision-makers. We focused on MEN2 as it constitutes a rare example of research in precision medicine where genetic testing enables disease risk-classification defining cost-effective clinical interventions for timely personalised curative and/or preventive treatment10,11. We aimed to observe how, where and who engages with cancer precision medicine for public health purposes in a developing country like Brazil.

Artigo completo: https://www.scielosp.org/article/sdeb/2019.v43nspe2/114-132/ 

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