Paper short abstract:

Matters of care involve partaking in struggles to make other worlds possible - not knowable, visible, countable but possible. Studying philosophy's involvement in changing primary education, I explore how attending to the work of matters of care complicate matters of capitalisation and factisation.

Paper long abstract:

Matters of care involve (feminist) partaking in struggles to make other worlds possible (Puig de la Bellacasa 2017) - not knowable, visible, countable, evidenceable, measurable, valuable, but possible; as well as possible. Through observations from a larger project 'Achieving Good Science', in which we study the everyday scientific work of five disciplines, I ethnographically explore how philosophy is getting involved in changing primary education. The philosophers I study are committed to shifting such education from a didactics of training individuals to one that fosters the collective development of relational skills. They draw on Deleuzian-Guattarian concepts such as 'dividu' which for them are not fancy concepts to theorize with in high-ranked journals but notions to situate back "into the mud of the world" they emerge from. Philosophy then becomes getting involved in teaching children to cultivate food, cook together, programme applications, practice aikido, produce theatre/music performances; children also take philosophy classes. This theoretically sophisticated and deeply pragmatic approach comprises involving and convincing municipalities, schools and industrial philanthropists of the importance of such philosophy for deprived and radicalising neighbourhoods. It requires factisation (better individual test scores per pupil) and capitalisation (long-term economic development of the neighbourhoods), which are commonly seen as the opposites of matters of care. I specify how attending to the work of matters of care of such philosophy in the mud complicates the relationship with matters of factisation/capitalisation, and thereby might inspire struggles to serve 'urgent need for democratic capacity building' (Verran 2017); as well as possible.

Paper short abstract:

Mobilising ethnographic materials gathered in a dialysis unit, the paper investigates how "quality of life" is crafted. It analyses both, enactments of quality of life and the tinkering with entities in nephrological practices, thus, providing an experiment in the making of normativities in STS.

Paper long abstract:

Since the first attempts to treat renal failure through dialysis, patient's quality of life has been a concern for nurses and physicians. While ethnographies provided by medical anthropologists (Kierans 2005; Russ, Shim, Kaufman 2005) have mentioned this issue, they have not studied it systematically. Drawing on the STS approach to turn normativities into an object to study (Pols 2006; Mol 2008; Thévenot 2002), this presentation, thus, investigates how in nephrological practices "quality of life" for patients on dialysis is crafted.

Mobilising ethnographic materials gathered in 2016 and 2017 on a dialysis ward in an Austrian hospital, I will first tease out how mundane goings-on of seeing and treating patients enact quality of life. I will then analyse how nurses, physicians, and patients tinkering with various entities, thus allowing patients to live as well as possible with their disease. My main argument will be that, while both ways of studying the crafting of quality of life provide valuable insights, it is the latter that allows articulating the concerns embedded in the mundane goings-on on the ward, what caring for patient's quality of life implies and what it does not imply.

Through the case of "quality of life", the paper will shed light on normativities in the making in a particular set of health care practices and suggest experimentation in the form of foolish storytelling as a way to explore the normativities that we, in STS, develop in accounts about them.

Paper short abstract:

When researching a telecare practice, different forms of good care appear. Through the case of Bob, a patient of a telecare project, I will discuss normativity-in-the making of nurses and researchers. I will show how different forms of good care can become bad care and what good research should be.

Paper long abstract:

When performing research in care practices, there is care all around. Caring for patients, caring for technology and caring for respondents. All involved feel that care should be good, but what counts as good is, can differ. In this paper I will discuss different forms of care and varieties in the 'good' of patients, nurses and researchers. The case of Bob, one of the patients of a telecare project for patients with severe mental illnesses, who live at home, is an example of my fieldwork. I will demonstrate how in an innovative practice different forms of good care can lead to bad care. I also will discuss what good research is in such practices, as good research is also about care. I will argue the importance of care in knowledge making, through good methods and naming the matters of concern. In researching how humans and non-humans in the telecare practice change care, which might pressure what good care is, I bring forward those changes which can help nurses and patients establish the good. Through and in this research I care. I will discuss the normativity-in-the-making of the nurses, but also of myself, as I do agree with Puig de la Bellacasa that care is an affective state, actual doing and about a 'moral political obligation', which is all about normativity-in- the-making. I will discuss where my care, including my normativity, is in my research and if that is where it should be.

Paper short abstract:

Reflecting on my research concerned with unconventional medicine, I will think through the ways in which STS can and should relate to "alternatives" in the today "post-truth" world. I will argue that the ontological openness of a concrete practice is a key characteristic to be examined and valued.

Paper long abstract:

Since 1970s STS has been invested in making visible and supporting epistemic and political alternatives. It has contributed to opening up policies and democratising knowledge. Recently, with the rise of "post-truth" and the strengthening leverage of various "alternative facts" in established institutions and debates, STS started reconsidering some of its normative positions and research strategies (including on the pages of EASST Review). In this paper I reflect on my ethnographic research which deals with unconventional and alternative medicine (CAM) in the Czech Republic and, in particular, the interfaces and frictions between CAM and biomedicine in daily practices of therapists, doctors and patients. In our study, we try to look at CAM and the realities it makes "visible, audible, tangible, knowable" (Mol 2002) without measuring them with the yardstick of established 'evidence-based' (EBM) knowledge. We witnessed many stories of better and good lives with CAM, stories that tend to be dismissed by current biomedicine. However, we also encountered CAM practices that seemed rather dubious to us and potentially harmful for their users. How should we face them as researchers? I want to argue that, in principle, opening up biomedicine to questioning and interference from 'other' branches of medicine deserves support. However, CAM should also be able to face critical questions and the ontological openness and inclusivity of a given practice seems as a key characteristic to be examined and valued in this context as it is a precondition for reflexive agency and the re-building of the shared ecologies of life.

Paper short abstract:

This paper explores the treatment of leprosy as a global technoscientific product based on a set of biomedical classifications. It offers a view on how the biomedical cure of leprosy is being currently questioned by patients in Brazil and provides insights into the ways it shapes care and resources.

Paper long abstract:

Drawing on literature from STS, this paper explores the treatment of leprosy as a technoscientific product based on a set of biomedical classifications and offer a view on how the cure is currently being challenged by patients. This paper is based on six years of field research, consisting of ethnographic incursions in former leper colonies and hospitals, and interviews with current patients, physicians, and biologists in Brazil. Many patients and hospital staff, point out that they would only recognize the cure of leprosy if the patients do not have to return to hospitals after discharge due to leprosy reactions. Ever since the advent of the Multi-Drug Therapy (MDT) in the 1980s, it has been taken for granted that leprosy can be cured after several months of treatment. However, finishing the MDT regimen does not necessarily lead to the end of the need for health care; or, some might say, to the end of the disease itself. Immunologically mediated episodes known as leprosy reactions may occur in up to 40% of those who have already been discharged, leading to severe and irreversible nerve damage and disabilities. This paper explores how the focus on the break of the transmission chain through MDT, by enacting the biomedical cure of leprosy, might have silenced the lack of knowledge on how to efficiently treat the reactions and have led to a lack of resources to the required life-long health care. It explores the effects a global technology of cure at a local level.

Paper short abstract:

The relatively recent concept of personalized medicine (PM) is already getting renamed as precision medicine (also PM). I will argue that this implies shifts in normativity that borrow from practices of both technical precision (as in tailoring) and precision warfare (as in 'magic bullets').

Paper long abstract:

In previous decades (say, from the 1950s), medical science has focused on inventing generalizable diagnostics and treatments ('blockbusters'). Evidence-based guidelines were intended to establish 'the best for the most'. More recently however (from the 1990s), personalised medicine looks for care that is maximally adapted to the bodies and the lives of singular persons - 'tailoring' being the dominant technological metaphor. Still more recently (from 2012 onwards), the P of PM has come to stand for Precision, not Personalised. Specification and individualisation thus no longer concern different persons / bodies, but different organs and cells. For instance, PM drugs are designed to act as true magic bullets finding their way through the body only to hit the diseased body part. No more side effects because of maximum target orientation.

By comparing practices of precision in medicine and health care with other practices that value precision, I will describe the normative shifts (related, among others, to inclusion and exclusion from therapies) embedded in the transition from 'blockbuster medicine' to personalised medicine to precision medicine. Normative shifts that borrow from the norms of both technical precision (as in tailoring) and precision warfare (as in magic bullets). I will also show which type of values may disappear from care practices when they become precision practices: anti-individualistic values of solidarity and cohesion, that stress what persons and bodies have in common.

Paper short abstract:

This paper examines how the different normativities that underpin social studies of donation have contributed to shaping the ways in which the topic has been rendered. It will sharpen STS tools to navigate conflicting normativities and to address the ethico-political question of intervention.

Paper long abstract:

Organ donation has received considerable attention within the social sciences. This paper will examine how the different normativities that underpin existing social studies have contributed to shaping the ways in which deceased donation has been rendered. Firstly, the polarised moral landscape will be analysed by juxtaposing the antagonistic ethical normativities that populate the literature; either those that take a denunciatory critical angle on the practices of procurement and unveil the bads of donation, or conversely those that justify and praise organ donation as a healthcare practice legitimised by the commendable goods of caring for donors and saving lives with transplants. Secondly, I will show how an STS material semiotics approach enabled me to offer a novel account of donation outside the aforementioned conflicting normativities. Crucially, in this story donation is studied ethnographically and articulated as an integrated healthcare practice but with a set of enduring difficulties that can neither be removed, nor justified or vilified with an appeal to reasons and an individual rights-based normative stance. The empirical investigation is committed to accounting for the practicalities and specificities that condition and constrain the given medical practices. The STS task at hand is to navigate the conflicting normativities and to grapple with the entrenched complexities and difficulties whilst moving within, and expanding, the interstitial spaces between critique and justification. Lastly, I will elucidate how STS analytic tools can be sharpened and mobilised to intervene in bioethical debates by furnishing them with situated knowledge from the practices and the practitioners involved.

Paper short abstract:

Juxtaposing routine Hepatitis C diagnostic testing in clinical settings with more decentralized testing drives, I explore competing enactments of "good diagnostics" in-practice. Discussing varying downstream results (intended or not), I also reflect on challenges for making such explorations matter.

Paper long abstract:

New pharmaceuticals have induced a therapeutic revolution for Hepatitis C virus (HCV) infections, promising to cure this intractable liver disease in over 90% of cases. With the purported solution to HCV looming large, "finding the missing millions" (WHA 2018) of unknowingly infected individuals has become a leading premise for global public health. To this end, HCV-testing is taking center-stage as biotech companies vie for top spot of recommended diagnostic test. Against this backdrop, I leverage ethnographic engagements in Austria and STS-insights into the enactment of bodies, health, and diagnoses (Mol 2002; Mol, Moser & Pols 2010; Yates-Doerr 2017) to explore the mundane practices of HCV diagnostic testing. Juxtaposing routine diagnostics in clinical settings with more decentralized testing drives, I attend to the instructive slippage between high-sensitivity laboratory testing and broad-impact screening efforts and ask how each of these enacts varying forms of "good diagnostics." While maximizing diagnostic certainty is the clear clinical target, the use of rapid tests in screening drives involves constant tinkering and myriad instances of uncertainty. However, as I will argue, this comparison does not easily translate into deficiencies of the latter. The uncertainty inherent in broad-impact screening routinely overflows, producing novel spaces for exchange-as-care and for rendering bodies sensitive to the risks of HCV. Ultimately, these purportedly competing forms of "good diagnostics" depend on one another while their results (intended or not) vary. I finish by reflecting on the practical challenges for STS-researchers to resist either-or choices and fashion ways to make different enactments matter.

Paper short abstract:

This paper discusses the differences and similarities in the aims, values and concerns of researchers working in Health Technology Assessment. It studies how the goods and the bads are negotiated in this interdisciplinary group, and how this relates to the idea of good science in related fields.

Paper long abstract:

In our project 'Achieving Good Science. A cross-disciplinary study' we follow researchers from five different disciplines in their daily research practices to find out what researchers care about and how they work hard to achieve what they see as good science. This paper discusses our ethnographic fieldwork in the Health Technology Assessment unit of Epidemiology. In this unit, researchers from different scientific backgrounds (psychologists, doctors, economists) with different uses of methods (experiments, computer simulations, action research) and various ideas of good science (prevent disease, make technologies patient centered, improve health care) are united. Moreover, most of the projects conducted within this unit have an interdisciplinary character. In one project, HTA researchers for example collaborate with business life to develop a Quality of Life measurement tool for infants, while another HTA researcher tries to cooperate with several health care organizations and the municipality to improve the care for people who leave an institution (e.g. a rehabilitation center). In this paper I focus on the differences and similarities in the aims, values and concerns of researchers working in this interdisciplinary field. I study how the goods and the bads are negotiated within these research projects, as well as between the researchers of this unit. An additional question is how this diversity of aims and values relates to the idea of good science in its mother-field epidemiology, and the monodisciplinary focus of the hospital.

Paper short abstract:

Multiple normative structures prescribing research integrity meet. This paper studies these encounters, their consequences and ways to care for both differences and translations between them. It empirically draws from cases in epidemiology and midwifery.

Paper long abstract:

This paper reports on an ongoing qualitative study of research integrity in large-scale, interdisciplinary, collaborative, research settings. Increasingly, research policy and funders prefer interdisciplinary research collaboration. Yet in such configurations, different versions of 'good' or 'proper' science may emerge. Moreover, research integrity or responsible research practice are not universal. There are multiple articulations of responsible research in science within but especially across disciplines. These disciplines or epistemic cultures place different objects at their core: elements or entities they value the most. Accordingly, they design formal and informal structures to permit care for this set of core values. This paper draws from an empirical study of epidemiology and midwifery. In these cases, entities are figured and valued by research policies or guidelines (codes-of-conduct, protocols, etc.) but also with care: 'good data' and 'good birth' respectively. However, the coexistence of different and even competing values of research integrity in collaborative research settings is understudied. This paper describes how research and care labour converge and diverge in the context of articulation of core valued entities. We draw from research on (e)valuation studies, research integrity, the social study of research collaboration, and current literature on care in STS. Subsequently, we develop a conceptual-analytical approach on the different normativities in research integrity as 'matters of care'. We argue that while different and competing normative figurations of research integrity exist within and between these cases, approaching these as matters of care highlights how interdisciplinary collaborations can persist and even prosper.

Paper short abstract:

In this paper, I will discuss the work of UK government scientists charged with researching 'pest control'. I draw on recent scholarship on the mutual constitution of 'good science' and modes of care, to understand British environmental knowledge controversies involving wildlife, science and policy.

Paper long abstract:

The Pest Infestation Control Laboratories (PICL) was a British government research institute, responsible for understanding and preventing how nonhuman organisms compromised human food supplies. Among other disciplines, PICL scientists practised applied ecology and ethology, studying the interactions of wild animal populations with humans, and acting as arbiters of what species should be considered by the state to be 'pests'. PICL was a key source of scientific knowledge and expertise for a series of contentious science-policy debates in the UK, including myxomatosis in rabbits; the exclusion of rabies from the UK; seal culling in Scotland; the eradication of invasive species; and controlling of badgers infected with bovine tuberculosis.

This paper will build upon recent scholarship investigating the mutual constitution of 'good science' and care in laboratories (e.g. Kirk, 2017; Druglitrø, 2017; Mol, Moser, & Pols, 2010). Like some of their colleagues in the lab, the field scientists of PICL were deeply committed to researching with animals as 'humanely' as possible. However, these applied ecologists faced unique challenges of doing so in the unpredictable spaces of field, farm and forest, while also producing policies for 'pest control'. PICL scientists collaborated with animal welfare organisations to do this, building standardised working practices for conservation and field biology. Their work combined anthropocentric priorities and the practicalities of killing, with care for ecosystems and preventing animal suffering. I will contrast PICL's modes of care with those of animal protection activists, showing how these moral differences can lie at the heart of environmental knowledge controversies.

Paper short abstract:

This paper explores mental health responses to the 3/11 disaster in north-eastern Japan from the point of view of providers, and the ways in which professionals situate the practical value of care work within the broader social context and normative scientific discourse.

Paper long abstract:

The 3/11 tsunami and nuclear power plant disasters in Japan have led to complex mental health service responses. Whilst theoretical literature and policy guidelines suggest susceptibility to and the experience of mental illness is relatively uniform and predicable, it is acknowledged that disaster-related mental health measures often lack clear goals -both in the eyes of policy makers, and practitioners- making evaluating outcomes difficult.

The Japanese mental health community is reluctant to put into force clear evaluation measures, for fear they will increase stress on an already traumatized population and raise ethical issues in the collection of personal data. As a result, the national government, which covers most of the costs associated with responding to severe disasters, is unable to evaluate how effective mental health activities have been. This may put continued funding in jeopardy.

From an STS perspective, drawing on long-term ethnographic fieldwork with mental health professionals in northern Japan, this paper will question whether challenges in program evaluation of disaster mental health activities result from a 'scientific deficit' in the mental health field in terms of producing normative outcomes, and how the legitimacy of numbers is resisted or accepted by those whose authority depends on expert judgment, character, or informal knowledge. In a region with severe economic and social changes due to the disasters, job losses and forced relocation, might the role of disaster mental health services be incommensurate with central government directives, or indeed is care itself resistant to normative practices of evaluation?