Abstract
Drawing on empirical ethnographic research in Brazil this paper examines how in the spaces between identifying genetic markers and conditional cancer risk, environments and diverse epigenetic logics are emerging and being negotiated among research and clinical communities, patients and their families. Focusing on an arena of research and medical intervention related to a gene variant known as R337h, thought to occur with high frequency in the south of Brazil and linked to the cancer syndrome Li–Fraumeni, it emphasises the relevance of examining epigenetics as an emic category but also its utility as an analytic category. It shows how, in a context of not yet fully knowing how and in what ways R337h contributes to increased cancer, a range of different ‘environments’ are invoked that unevenly articulate an emerging and still inchoate and unfolding terrain of understanding. In an arena of expanding genomic research and medicine, where the identification of low-risk mutations associated with cancer is increasingly common, the Brazilian case provides a particular lens on the way environments and genes are being meaningfully calibrated and how differently implicated communities resourcefully populate the gaps in knowledge and understanding with consequences for research, care and embodied risk.
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Notes
This initial hypothesis does not seem to have gained much research traction across a broad cancer genetic research community in Brazil or elsewhere (see Armstrong, 2014). How it may be re-emerging or transformed by evolving terrains of epigenetic inquiry related to R337h requires further research.
It is possible that these would now be framed in much more explicit epigenetic frames of reference given this research terrain has likely evolved since my field work in 2010–2012.
This expression is not translated but were her exact words she used in English. She may have been referring to ‘cultural fingerprint’.
Later, this cancer specialist suggested that the high rate of breast cancer could be related to something in the environment in the region referring to water pollution. She did not however elaborate. While a focus on genetic ancestry facilitated discussion of cultural ‘behaviours’ it did not seem to easily widen a paradigm for research that included questions of pollution.
There were also some scientists who articulated similar doubts. One molecular biologist from Porto Alegre for instance said “perhaps we will never know absolutely know what is happening…there isn’t a 100% rule. There are so many factors that could be involved”. He also added however “the more we study the more doubts we have but we have to move forward with this.”
The term ‘Gaúcho’ refers to the regionally identified people of the southern most state of Rio Grande do Sul.
In other papers, I have also discussed how this history of social medicine also shapes the ‘activism’ of health professionals and their commitment to public health (see for instance Gibbon, 2016). See also Behague (2016) for a discussion of how the long duree of Brazilian public health has shaped the medicalisation of mental health in Brazil.
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Acknowledgements
I would like thank all those who agreed to participate in the outlined research. I extend my sincere gratitude and thanks to the anonymous reviewers and editors of the special issue who generously provided feedback. I also acknowledge the support of the Wellcome Trust who provided financial support for the research discussed in the article.
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Gibbon, S. Calibrating cancer risk, uncertainty and environments: Genetics and their contexts in southern Brazil. BioSocieties 13, 761–779 (2018). https://doi.org/10.1057/s41292-017-0095-7
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DOI: https://doi.org/10.1057/s41292-017-0095-7