(A01)
Biosocial forms of living: imbricating technologies, social and medical knowledge
Location Cavendish Lecture Theatre (Faraday Complex)
Date and Start Time 27 Jul, 2018 at 09:00
Sessions 3

Convenors

  • Luca Chiapperino (University of Lausanne) email
  • Yannis Papadaniel (University of Lausanne) email
  • Giada Danesi (University of Lausanne) email

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Short abstract

This panel aims at analysing biosocial engagements as practices materializing and giving sense to the entanglement of bodies and environments, by addressing one common question: how do technologies and experiences, biographies and biologies intertwine in the production of biosocial forms of living?

Long abstract

Pioneering studies of technology in medicine (e.g. Mol and Elsman 1996) have long drawn the attention of STS scholars to the heterogeneous configurations of social and factual elements giving sense to diagnoses and the experience of illness. More recently, the opportunities offered by post-genomic sciences are widely regarded as heralding a turn (e.g. Ingold and Palsson 2013), which alleges opening up the conceptualizations of biology to its complex sociocultural imbrications. Although the latter ground their approach to bodies upon concepts and metaphors still in the making, it is worth asking how this emerging episteme influences the ways individuals (patients and relatives) experience illness, and what parallels can be made with established accounts of the role of technologies in these processes.

To this purpose, this panel aims at analysing biosocial engagements as practices materializing and giving sense to the entanglement between bodies and their (ecological, social, cultural) environments. In particular, we are interested in documentations of how agents dealing with a medical ordeal, kinship and heritability issues or social behaviours mobilise and transform cultural habits (e.g. eating, sport, etc.), knowledge of body/environment relationships (e.g. exposures, microbial symbioses, etc.), and biomedical technologies of health and disease (e.g. digital monitoring, self-quantification).

We encourage submissions deeply rooted in empirical studies of the biosocial at the crossroads between technoscience, biomedicine and society, which address one fundamental question: how do technologies and experiences, biographies and biologies intertwine in the production of and experimentation with biosocial forms of living?

This panel is closed to new paper proposals.

Papers

Plasticity before plasticity: an archaeology and biopolitics of biosocial entanglements

Author: Maurizio Meloni (Deakin University) email
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Short abstract

Histories of plasticity of the body become more visible by the day in the Global North and South. This paper offers an archaeological view of how plasticity was used in ancient and early modern times to establish hierarchies between human groups, prefiguring an alternative history of racism.

Long abstract

As a contribution to an alternative history of biopower, one that does not project back on ancient times twentieth century eugenic tropes of genetic hardness and fixity, I discuss here the phenomenology and politics of plastic bodies in ancient and early modern medicine, particularly humoralism in its global ramifications. The differential plasticity of various populations was used since the beginning of medicine (in the West and beyond) as a form of biopolitical distinction between sexes and between ruling and ruled groups, for instance Greeks/Romans and the Orient, temperate countries and the tropics, inaugurating a tradition that will last well until nineteenth-century colonialism: plasticity at the service of imperial projects, but also plasticity as a fear of degeneration in consequence of human migrations to new colonies. I argue that we need to excavate this deep history of plasticity as always gendered and racialized to see why today it is particularly on women, in the Global South, or among vulnerable populations in the North, that scientists find compelling cases to detect this emerging plasticity of bodies to their local surroundings.

Environmental epigenetics and mental health research: enacting trauma in the lab

Author: Georgia Samaras (Technical University of Munich) email
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Short abstract

This paper contributes to better understanding how environmental epigenetics refigures mental health research in the lab. It investigates how psychosocial trauma is transformed into a research object that is accessible in lab experiments and examines notions of pathology and therapy that co-emerge.

Long abstract

Environmental epigenetics (EE) is a field that understands the human

body and mind as malleable by its surroundings: environmental

factors, for example air pollution or nutrition but also stressful living conditions, are considered to influence the gene activity and hence physical and mental health. I am particularly interested in the hypotheses that negative events in life, such as trauma and stress, can leave marks on the epigenome that increase the likelihood of mental illness in later life (Yehuda et al. 2015). In my PhD project, I investigate how researchers in one specific psychiatric research institute use approaches from EE to better understand mental illness. In this talk, I will specifically focus on how they enact trauma as an epistemic object in their work. Drawing on participant observation, qualitative interviews and literature analysis, I investigate how researchers transform trauma into a research object that is accessible in the lab, for example, by experimentally enacting it as 'maximum stress'. I trace how trauma is enacted in different experimental set-ups (cell culture, mouse model, human cohorts) and how researchers configure the relations between these different research models. Across these different levels, I investigate how this increasingly biomolecular perspective on mental health refigures current understandings of trauma in terms of pathology and nosology and shapes researchers' visions of potential therapies and prevention strategies.

The biosocial imaginaries of epigenetics: performance, visibility, ethopolitics

Authors: Luca Chiapperino (University of Lausanne) email
Francesco Panese (University of Lausanne) email
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Short abstract

This talk investigates how researchers in epigenetics and Developmental Origins of Health and Disease (DOHaD) currently (re)produce, perform and experiment with alternative imaginaries of biosociality.

Long abstract

This talk investigates how researchers in epigenetics and Developmental Origins of Health and Disease (DOHaD) currently (re)produce and experiment with imaginaries of biosociality. Drawing from an empirical investigation of laboratory practices and contemporary scientific literature in these domains, we show how scientists perform an ideal of biosocial articulations between the biological instantiations of lifecourses and biographies on the one hand, and the socio-political modulation of biological predispositions on the other. From the construction of the organic inscription of contextual and/or experiential phenomena (e.g. methylation marks of stressful experiences or environmental exposures), to its reverberation into socio-political claims to protect one's epigenome for the benefit of future generations, we describe the fields of epigenetics and DOHaD as providing visible traces of the entanglements between social conditions and biological substrata, generating material instantiations of biosocial modulations anchored into imaginaries of social order.

Looking at the plurality of strategies scientists adopt to objectivise the biosociality of living forms in epigenetic and DOHaD research, we underline that several barriers can be found in the technoscientific repertoire of these biosciences for seizing biosocial hybridity. These constraints reverberate also in the imagination of moral and political strategies of intervention currently spreading out of epigenetic knowledge of health programming, with the resulting effect of giving evidence to distinct biosocial forms of ethopolitics; namely, by paraphrasing Rose (2007), the politics of how we should conduct our biography appropriately in relation to our biology, and vice versa.

Vaccines' intricacies and elusive biological processes

Author: Roberta Pala (University of New South Wales) email
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Short abstract

My paper investigates the encounter between immune system and vaccine matter, considering the networks and bio-cultural implications that unravel from it. I focus on the unexplained circumstances of vaccine 'failure' in order to appreciate scientific surprises as novel and productive events.

Long abstract

My paper investigates vaccines as complex material events, going beyond the current debate between pro or anti-vaccination advocates. I problematise the concept of a biological body, by focusing on the encounter between immune system and vaccine matter, and the diverse ramifications that emerge and cross over due to this intervention. I consider biological processes in terms of elusive, unfinished and interdependent cultural and ecological moments that remain contingent, learnt, diverse and not always predictable. Vaccines as biological compositions can elicit tensions and impact interconnected networks that entangle biological experiences with lifestyle choices, environmental milieus, genetic characters, nutritional habits, and contingent or random events.

I consider how STS can help to rethink those unexplained and unexpected circumstances of vaccine 'failure' and suboptimal immunization, often categorised and dismissed as rare exceptions, by regarding them as productive of new experiences. By giving voice to vaccines as more-than-human actants, and by manoeuvring different disciplinary influences, I analyse those circumstances where vaccines' workings remain elusive to scientific knowledge and control, in order to represent the ambivalence and complexity of the biological body. In this way, the paper will challenge ideas of bodily integrity, and will expose and welcome ecological perspectives of bodies' interrelatedness. This is in line with STS' ontological turn, as it moves from the epistemological focus on how scientific knowledge is produced to the more provocative question of how biological processes are enacted and played out contingently. My paper will insert itself in the current STS debate that considers the challenges of talking about a world that is in constant process.

Embodiment and self-care practices: how injured runners negotiate medical expertise online

Author: Patricia Campbell (Red Deer College) email
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Short abstract

Recognizing the materiality of communication practices, this paper examines how mediated biomedical expertise becomes intertwined with the social and embodied experience of injury in an online community to produce situated knowledges that challenge or reconfigure dominant biomedical practice.

Long abstract

In STS explorations of configurations between technoscience, biomedicine and society, the communication technologies that mediate and shape these engagements have been largely ignored. The internet alters users' relationship with biomedical expertise in two main ways: it provides individuals with previously inaccessible medical expertise from multiple sources; and it allows them to form communities where they can negotiate this expertise and share their experiences of health and illness. Using the model of coproduction, this paper investigates how recreational runners negotiate the care of their material bodies in this virtual space. The ethnographic methods include a case study of the online collective, Running Mania, in particular, participant observation of the injury forum and interviews with the website's users. The paper argues that even in the absence of direct expert involvement, collective reflexivity toward freely accessible mediated medical expertise becomes intertwined with runners' social and embodied experiential expertise to produce new forms of situated knowledge and caring practices that often challenge or reconfigure dominant medical practice. However, the body is problematized online, where embodied expertise is (re)produced in the absence of a running body, blurring the distinction between interactional expertise (talking about running) and contributory expertise (doing running). In this virtual space, embodied expertise becomes entangled in the discursive performance of individual identity, the online enactment of a collective running practice, the attempt to articulate often tacit knowledge, and complex responses regarding trust of medical advice in the absence of face-to-face communication.

Living with type 1 diabetes as a biosocial form of living

Author: Giada Danesi (University of Lausanne) email
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Short abstract

This paper explores living with type 1 diabetes as a biosocial form of living through the lens of the uses of diabetes self-management technologies and the entanglements between them and the experiences of the body and the self of people living with chronic illness.

Long abstract

The development of chronic illness has been conceptualised as a particular kind of 'disruptive event or experience' (Bury 1982). This perspective opened up questions about the 'critical situation' prompted by the diagnoses and treatments of chronic diseases, which reconfigure the structures of everyday life and the forms of knowledge that underpin them. Consequently, they lead to in-depth transformations of the everyday practices and the subjective experiences of patients. In this paper, I discuss this biographical disruption in relation to the biosocial entanglements that the diagnosis and the experience of chronic illness encourage.

Drawing from an ethnographic study on diabetes (self-)management tools, the objective of this paper is to explore the entanglements between the uses of diabetes self-management technologies and the experiences of the body and the self of people living with type 1 diabetes. The analysis reveals how the body and crucial daily activities, such as eating and physical activity, as well as social relations and, in a broader sense, the environment of people living with diabetes are reshaped after the diabetes diagnosis and during illness trajectories through the interactions built with new human and non-human actors. These interactions among these heterogeneous agents hold new knowledge and engender practices embedded in biomedicine and clinical and lay experiences of illness. These processes produce a new form of living that we can define as biosocial.

Ovulation biosensors: emerging practices of sensing and knowing

Author: Joann Wilkinson (Lancaster University) email
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Short abstract

In this presentation, I examine women's practices of ovulation biosensing. I show how women come to know ovulation by engaging in reproductive scientific practices at home and by collaboratively coding the data they collect about their bodies with other women online.

Long abstract

Ovulation biosensors are devices worn on, or used with the body, which can help women detect ovulation. The manufacturers of such devices claim that if women know when they ovulate, couples can arrange heterosexual intercourse during this time, and thus increase their chances of conceiving. Within the contemporary UK context, in which becoming pregnant is presented in the popular media, and in medical discourses, as more difficult for women in their 30s and 40s, manufacturers' claims are attractive for those trying to conceive. In this presentation, I show how women try to make sense of the data they produce and collect through ovulation biosensing, and how they negotiate the gap between seeing a sign on device and knowing when ovulation is taking place. The manufacturers of ovulation biosensors present this as a single step in which, on using such products, women will know when they ovulate, and from which, they will be able to make decisions about when to have reproductive heterosexual intercourse. I argue however that the transition from seeing to knowing is understood as more complex because knowledge is not static or packaged but instead done in practices. Women come to know ovulation by engaging in reproductive scientific practices at home including selecting tools, testing bodily fluids, observing changes in data and comparing and collecting samples. By collaboratively coding data with other users online, women learn about their bodies in new ways, but ovulation emerges as uncertain and unstable.

Restorative justice and the epigenetics of early life adversity: new approaches to the biosocial effects of trauma

Authors: Martha Kenney (San Francisco State University) email
Ruth Müller (Technical University of Munich) email
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Short abstract

Epigenetic studies of early life adversity often focus on harm and lasting damage with few suggestions for how to live well with trauma. We explore initiatives in restorative justice and trauma-informed care that draw on the epigenetics of early life adversity, but emphasize recovery and resiliency.

Long abstract

Environmental epigenetics explores how material exposures and social experiences affect gene expression. A key tenant of the field is that exposures in early life have particularly strong effects on later life health. Numerous labs today study the epigenetic effects of "early life adversity," prominently featuring research on the role of trauma and stress for physical and mental health. In our previous work we argued that this research tends to focus on harm and lasting damage with little discussion of reversibility and resilience (Kenney and Mueller 2017). While researchers often emphasize prevention, they offer few suggestions for how communities and individuals can find ways to live well with trauma. For this reason, we have become interested in initiatives in the fields of trauma-informed care and restorative justice that draw insights from the epigenetics of early life adversity, but apply a framework that emphasizes recovery and resiliency. In our ongoing fieldwork in the U.S. Pacific Northwest, we explore the role that bio-based accounts of trauma play in the work of organizations that implement restorative justice and trauma-informed care practices in schools, juvenile corrections, and communities. We investigate how these organizations make sense of biological knowledge and creatively adapt it to restorative justice work, resulting in alternative narratives about trauma and stress that center social justice and health equity. We propose that these narratives are not only important for responding to trauma in institutions and communities, but that they can also be resources for reorienting epigenetic research in the lab.

Treating and living endometriosis: a biosocial experience

Author: Anne-Charlotte Millepied (Ecole des Hautes Etudes en Sciences Sociales) email
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Short abstract

What makes endometriosis a biosocial experience? This paper focuses on medical work and on the everyday life experience of women affected by this painful and chronic disease, in order to highlight the entanglement of its biological and social dimensions.

Long abstract

Endometriosis is a chronic and debilitating disease affecting between 10 and 20% of women in their reproductive age, but it has long been forgotten, ignored and underestimated. However, we are now - since a decade - in a context of visibilization and publicization of endometriosis. Historical and sociological studies have shown what chronic diseases do to modern medicine: they challenge its efficacity and force it to reorganize itself. The goal of therapy becomes primarily to manage the disease and its chronic nature: this has an effect on medical work but also in the everyday life of patients. This is what I study in my doctoral research on endometriosis, through ethnographic observation of a specialized hospital center for endometriosis in Paris and in-depth interviews with women affected by the disease. In front of endometriosis, the medical profession faces its limits, concerning the diagnosis, the necessity for a multidisciplinary care, and the treatment. There is no cure for endometriosis and women have to manage chronic pain in their everyday life, at work, with friends, in their family, and their intimacy. They often turn to alternative or complementary therapies, ranging from osteopathy and acupuncture to psychotherapy, naturopathy or meditation. In this presentation I would like to understand endometriosis as a biosocial experience, in the medical setting as well as in all the other social spheres where it's involved.

Forgetting about the sword of Damocles: how do people live with presymptomatic diagnosis?

Authors: Madeleine Akrich (MINES ParisTech) email
Vololona Rabeharisoa (MINES ParisTech) email
Florence Paterson (MINES ParisTech, CNRS, PSL) email
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Short abstract

To what extent does presymptomatic diagnosis bring in changes to concerned people's understanding of the disease, their bodies, their everyday lives and their relations to their relatives? We will address this question in the context of a non treatable rare disease called CADASIL.

Long abstract

Our communication is about presymptomatic diagnosis for a disease called CADASIL. CADASIL is a rare autosomic disease, which was identified in 1993: it manifests in multiple cerebral strokes causing progressive neurocerebral degeneration. To date, there is no available treatment, which questions the relevance and the legitimacy of pre-symptomatic diagnosis.

Drawing on a series of interviews with potentially concerned persons, and with some of their relatives, we will explore the following questions:

- To what extent is genetic information decisive in people's understanding of the disease and its implications on their lives?

- How do concerned people take into account genetic information in their approach to their bodies? Does it elicit them to adjust their dailylife routine?

- How does this information affect family relations? More specifically, how do people deal with the ethical dilemmas related to the disclosure of information?

- To what extent does genetic information affect the lives of family members?

We will confront our observations to a series of analytics proposed by social scientists, such as "patient-in-waiting", "asymptomatic ill", and we will discuss the notion of "biosocial forms of living" to describe and analyse the way people make sense of their situation.

Digital biocommunities: community-building and sharing practices on blogs and forums among people diagnosed with bipolar disorder

Author: Claudia Egher (Maastricht University) email
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Short abstract

This paper argues that people diagnosed with bipolar disorder form digital biocommunities by combining personal experiences and particular sharing practices with specific engagements with blogs and forums. This shows that the Internet can enhance solidarity and the development of supportive groups.

Long abstract

Over the last decades, dominant discussions in healthcare have focused either on individuals, conceived as independent, responsible agents, or on entire populations, with health framed as a public good. By studying the online exchanges of people diagnosed with bipolar disorder, this presentation describes how the Internet can enhance solidarity and the development of supportive communities. It thus contributes to a more recent body of work, which highlights the importance of solidarity and relationships for the ways in which people engage with their health issues. The findings reveal that by providing thick descriptions of their personal experiences and of the practices they engage in as they seek to negotiate the meaning of their condition in their daily lives, by sharing their difficulties, and by expressing their needs, people come together online based on increasingly more specific commonalities of experience. Building upon Rabinow's (1996) notion of biosociality, I develop the concept of digital biocommunities to show that online contributors form new subgroups, based not only upon a common diagnosis and shared values, but also on similar responses to particular forms of treatment, similar life circumstances, and similar engagements with the technology of blogs and forums. Digital biocommunities can be of great importance, by facilitating the circulation of knowledge and the provision of support among subgroups of people diagnosed, including contributors geographically at a distance and those who may find face-to-face interaction too exerting. But there is also a danger that they may contribute to new forms of exclusion and inequality in healthcare.

This panel is closed to new paper proposals.