London School of Hygiene & Tropical Medicine

Abstract:　

Biosociality has become a dominant theoretical lens through which to view developments in genomics and associated life sciences, focusing attention on new patient collectives, treatment promises and choices based around molecular identities. But we know little about how these formations will change as genomics moves into mainstream healthcare for common conditions such as cancer.

In this presentation I discuss preliminary empirical findings from a 5 year Wellcome Trust funded study, held jointly with Sarah Cunningham-Burley, Edinburgh (2015-2019), which we are working on with Emily Ross, Tineke Broer, Choon Key Chekar and Julia Swallow, to explore cancer patienthood in the genomics era (http://www.cancerandsociety.ac.uk).

I consider our findings in relation to new kinds of collectives, promises and choices associated with cancer genomics. Drawing on our initial analysis on online communities of so-called ‘pre-vivors’ at risk of cancer and the accounts of former cancer patients and cancer advocates as they relate to genomics medicine, I explore how participants collectivised and identified themselves in relation to genomics, also teasing out some of the limits on these processes and their implications for the biosociality thesis.

I highlight the episodic and contingent character of biosociality, situating it in relation to other kinds of sociality based around embodied experiences, self-care and cultural memories of cancer and medical procedures experienced by a wide range of patients.

I consider experiences of marginalisation from and deliberate ignorance of biosocial identities and communities in relation to struggles for patients to be treated as unique and deserving of appropriate care, contrasting this with the paradigm of personalisation and stratification offered by genomic medicine.

I also explore how campaigners made the case for participation in trials of new tailored treatments being available to all cancer patients as part of routine care and at the same time queried the hype and feasibility of stratified cancer medicine through appeals to more global kinds of solidarities.

Together then these preliminary findings suggest that at a time in which genomic and other kinds of biomedical innovations are being mainstreamed in clinical practice, social scientists should be wary of mainstreaming biosociality by default, and should instead attend to other countervailing social processes and experiences of advocates and individuals at risk or affected by diseases like cancer: processes and practices which are, at times, in tension with the molecular and promissory emphasis of biosociality.