Risk has been depicted as one of the core features of our contemporary societies, reflecting the growing use of science in understanding and governing uncertain events (Giddens 1990). The language of risk has become pervasive in medicine and public health policies (Armstrong 1995). Alongside with risk, uncertainty is an important characteristic of social regulation of health. For example, uncertainty, as a concept in its own right, is slow to be implemented in health policies. Indeed, it is largely avoided, as direct and simple messaging is preferred to admitting that one is not quite sure what the proper measures in a particular situation might be (Sarkki et al. 2014). This has important consequences on individuals’ risk perceptions and behaviours and it places the focus on individual responsibility and accountability for ones’ health. A frequently used example is the risk associated with alcohol consumption and smoking during pregnancy (Bell, McNaughton, and Salmon 2009; Lowe and Lee 2010). Another recent example are the policies adopted by some countries during the first and second waves of the COVID-19 pandemic, which stressed the individuals’ responsibility to adopt behaviours that lower their risk of contracting and spreading the virus, an option not equally open to all citizens. 

Beside the issue of how uncertainty shapes health policies and how health policies integrate uncertainty and its consequences, this call for papers also welcomes contributions addressing how lay people manage health amidst uncertainty in everyday life. Zinn (2008) suggested that individuals cope with risk and uncertainty using a variety of strategies, including hope, faith or trust. Handling uncertainty is more complex than merely internalising expert advice. It cannot be separated from the values and emotions involved, and the moralisation of health in the context of the “new public health” and the individualisation of risk management (Petersen and Lupton 1996). While individuals are expected to take responsibility for reducing risks, they usually make decisions under uncertainty in connection with the constraints and multiple other dimensions of their existence, as in the case of the genetically at-risk status (Caiata-Zuffery 2015).

Biomarkers of bio-psycho-social complexities: effacing luck and uncertainties in the making of epigenetic knowledge 

Luca Chiapperino

STSLab, Faculty of Social and Political Sciences, Institute of Social Sciences, University of Lausanne, Lausanne, Switzerland

Epigenetic modifications – which include DNA methylation, histone modifications and regulation of gene expression by RNAs – are often represented as potential bio-dosimeters of lifestyle and environmental exposures. Global and gene-specific methylation patterns, in particular, are claimed to account for the biological effects of different individual behaviours and exposures, such as psychotropics consumption, smoking, nutrition and physical activity. Measuring epigenetic modifications, though, seldom provides biomarkers to predict and intervene into health trajectories: epigenetics is a chief mechanism through which lifestyles and environmental exposures affect gene expression, yet little actionable epigenetic knowledge exists to promote organismic development, prevent late life diseases and potentially protect future generations’ health. So, how is this knowledge of the epigenetic biomarkers of lifestyle behaviours, the social environment and exposures stabilised and then transformed into normative claims of responsibility to protect one’s epigenome? To answer this question, the present paper builds upon two threads of my research, one empirical, the other theoretical. 

First, I detail how epigenetic marks of lifestyles and/or exposures are made to hold by transposing these biological traces across different animal models and human studies. The convergence of these clues requires a specific work – which is conditional to the erasure of suppositions, differences, gaps and uncertainties – prioritising consistent biological pathways that build up evidence across species. Researchers actively transform imprecise information in animal models into a hypothesis to be tested across bio-medical settings, thus in turn transforming (through extrapolations) evidentiary clues of bio-social traffic into established, discrete, identifiable biomarkers of disease risks. This stability of knowledge comes, however, at the expense of considering uncertainties around the informational value of these markers, as well as through the exclusion of other contextual factors contributing to epigenetic modifications (e.g., psycho-social determinants of health, living conditions, etc.) and their impact over health. 

Second, I draw on the debate on ‘moral luck’ – i.e. the import that factors beyond one’s control have on the cogency of normative claims such as responsibilities – to criticise claims towards backward- and forward-looking responsibilities to protect one’s epigenome for the sake of personal health. Luck, I argue, is part and parcel with the actions required to protect one’s epigenome, as well as the biological mechanisms that regulate it (i.e., stochasticity). Taking luck seriously entails therefore embracing these constitutive uncertainties and their impact over the formulation of normative claims around epigenetics. A consideration of luck reveals the vulnerabilities, circumstances and uncertainties that call into question responsibility claims, and calls for directing our moral intuitions away from the dominant atomistic framings parsing out individuals or collectives in the societal uptake of epigenetics.

To conclude, the paper highlights the intertwined moral and epistemic work scientists perform to establish epigenetic biomarkers, and how this work is conditional to exclusions of luck, stochasticity and uncertainties for both evidential and normative claims about epigenetics’ contribution to health.

Keywords: epigenetics, bio-psycho-social, uncertainties, luck, complexity work.  

“It Was Like War but We Were Fighting Together.” Coping with Risk, Uncertainty and Responsibility During the COVID-19 Pandemic - Ethnographic Explorations of a Nursing Home

Sandra Staudacher, Nora Peduzzi and Megan Davies

University of Basel, Institute of Nursing Science & Institute of Social Anthropology

Older people in need of long-term care in nursing homes are among the most vulnerable groups for the Coronavirus disease (COVID-19) and thus in the public health discourse seen as “at risk”. In Switzerland, nearly half of all COVID-19-related deaths have occurred in nursing homes. In the context of the rapid and dynamic evolution of the COVID-19 pandemic the federal government and the cantons introduced different measures to protect the more than 90,000 residents of Swiss long-term care facilities against infection. Depending on the epidemiological situation, the implemented measures varied from simple hygiene guidelines to the elaboration of complex protection concepts and visit bans. In a situation of general uncertainty of how this virus was transmitted, how the pandemic would develop and what so called “side effects” possibly could be expected for society at large, institutions and policy makers on all levels nevertheless rather reacted than acted with foresight. The consequence of these reactionary developments on the national level was that the responsibility first was delegated to the cantons and from the cantons mostly directly to the long-term care facilities. The nursing homes in Switzerland were therefore largely left to their own devices and had to find a way to weigh various risks such as possible infections or social isolation of residents. At the same time, all decisions at the level of the nursing home management as well as concrete actions of nursing and care staff were characterized by great uncertainty. 

This paper bases on data from the “Tri-National Ethnographic Multi-Case Study on Quality of Life in Long-Term Residential Elder Care” (TRIANGLE), a project which is co-funded by the EU and the Research Fund of the University of Basel. We explore how a nursing home in the canton Basel-Land coped with risk and uncertainties during the first and second wave of the COVID-19 pandemic. From October 2020 to February 2021 the TRIANGLE research team conducted an ethnographic study including observations, interviews and document analysis. We accompanied 12 residents, their relatives and 20 professional staff (eg. nurses, activation staff, physiotherapists doctors, CEO, cleaners, etc.) in their everyday activities during the ongoing pandemic, while they had to cope with several COVID-19 outbreaks in the nursing home. 

We  will depict how the nursing home staff more and more had to leave their usual person-centered care approach (McCormack et al 2011) behind and instead had to implement more general rules, procedures and measures. The ethnographic data shows how the staff were confronted with a high burden of responsibility to – as a nurse said - “win this war” against an unpredictable virus while not being able to pay justice to individual needs and their professional ethos. A general narrative of coping to provide at least basic care, helping each other beyond the usual professional responsibilities and tasks during the biggest COVID-19 outbreaks through interprofessional collaboration came up. This shows how the pandemic had severe consequences not only for nursing home residents but also for staff in nursing homes, who all of a sudden had to make decisions and take actions society did leave to them. 

Keywords: elder care; interprofessionality; person-centered care; COVID-19 pandemic; ethnography   

Facing Uncertainty in early Dementia Diagnosis Practice: Policies matter

Mira Feyᵃ Olivier Giraudᵇ Barbara Lucasᵃ Jenny Maggiᶜ Samia Hurstd Ana Gurauaᵈ

ᵃHaute école de travail social Genève (HETS/HES-SO), Geneva, Switzerland; 

ᵇLaboratoire interdisciplinaire pour la sociologie économique; (Lise), CNRS-Cnam (Centre national de la recherche scientifique and Conservatoire national des arts et métiers), Paris, France; 

ᶜInstitut de recherches sociologiques, Department of Sociology, University of Geneva, Geneva, Switzerland; 

ᵈInstitute for Ethics, History, Humanities (IHEH2), University of Geneva, Geneva, Switzerland

Early diagnosis and post-diagnostic support were defined as key features in the first Swiss National Dementia Strategy 2014–2019, as they intended to both enhance the patients’ quality of life and contribute to cost containment. This federal diagnosis policy was backed by the diffusion of shared recommendations for dementia diagnosis made by an alliance of specialists from various disciplines (Bürge, et al. 2018). However, in practice, there is still a high degree of diversity in the concrete steering and implementation of dementia diagnosis across Switzerland, as the actual implementation of such public health policies remains a cantonal competence. Moreover, a plurality of reasons exist why early diagnosis may be considered beneficial or harmful to the affected persons, their family, health care professionals, and society as a whole. Hence, early diagnosis can confront health professionals with a range of ethical issues at each step of the diagnosis process. Yet, to date, only very few publications on cantonal dementia care policies exist, and even less that deal with the ethical issues related to dementia diagnosis practices. 

Our contribution will address the dilemmas related to early Alzheimer’s diagnosis practice in Switzerland by putting them in their cantonal political context. Based on three recent case studies (Tessin, Vaud, and Zürich), we identify key ethical issues while arguing that these dilemmas are related to the specific characteristics of the respective cantonal dementia policies as well as to the network of cantonal actors specialized in the health and well-being of the elderly. These networks are constituted by the medical specialists in the fields of geriatrics, psycho-geriatrics, psychiatry, neurology, but as well by associations specialized in the support of the elderly. Government, both at a cantonal level as well as at the level of local authorities plays an important role. Our general hypothesis is that the nature of the dilemmas as well as the solutions used to address them are shaped by the articulation of the cure/care divide specific to each canton.

In the introduction, we shortly summarise previous research on ethical issues related to early diagnosis and characterize the Swiss Dementia Strategy with regards to these issues. In the first, theorical part, we present a comparative analytical grid aimed at relating the ethical issues experienced at the level of policy implementation with the cantonal dementia policy structures and dynamics. Three dimensions of dementia cantonal public policy are considered: the institutional dimension (referring to the power structure into the field), the normative dimension, and the dimension of services provision and coordination. In this context, drawing on discourse-analytic insights as developed in the field of interpretive policy analysis (Bacchi 2012), we assume that the ethical dilemmas and their regulation are – at least partially - constituted by the cantonal policy context, and result from conflictual “negotiations” among key actors. In the second, empirical part, we start by presenting our design and methodology

(a). We first look in at how dementia diagnosis is framed, regulated and implemented in the cantons of Tessin, Vaud and Zürich. (b). Then, we focus on the ethical dilemmas reported by health and social professional in those cantonal contexts, and the different way these were framed by the actors. (c).Those dilemmas include pre-symptomatic diagnosis (biomarkers), early detection, medical uncertainty, and diagnostic disclosure. In the final part of the paper, we will discuss our first results.

Our presentation is based on an ongoing research project funded by the SNF (PNR 74). Empirically, it draws on three case studies conducted in 2020 which included more than 50 interviews with key actors in the selected cantons.

Keywords: Early dementia diagnosis, uncertainty, health care network, coordination; professional practice, ethical dilemmas, public health care 

 “I will not put myself above my child” – Managing alcohol risk and (re)producing gendered norms of good parenthood during pregnancy.

Irina Radu¹, Solène Gouilhers², Raphaël Hammer², Yvonne Meyer², Jessica Pehlke-Milde¹

¹Zurich University of Applied Science (ZHAW), School of Health Professions, Institute of Midwifery

²University of Applied Sciences of Western Switzerland (HESAV), School of Health Sciences (HES-SO)

Governmentality principles of risk-aversion and individual responsibility have long permeated the realm of family, framing good parenthood as risk-averse parenthood. This also applies to pregnancy, an incipient phase of the transition to parenthood. Here research shows that the role of managing risks for the foetus lies mainly with the woman. The role of male partners during this stage, however, has been underexamined in the sociological literature.

Our study focuses on expecting couples and their experience with and perception of alcohol risk during pregnancy, as well as the construction of boundaries between “harmful”, “risky” and “safe” alcohol consumption habits. To this end, we conducted separate qualitative interviews with 46 couples living in Switzerland. 

Our findings indicate that most expecting parents perceive abstinence, or significant reduction of alcohol consumption, as an integral part of good parenthood. Women in particular, feel responsible for the management of alcohol related risk and uncertainty, which involves an on-going monitoring of their daily habits and bodily sensations, as well as navigating conflicting norms within daily life, work, sociability and coupledom. In this ongoing process of risk monitoring, male partners take on a secondary role, referencing information and risk appraisals provided by the women, and sometimes providing support in situations of uncertainty.

Most men reduce their alcohol consumption marginally. “Shared abstinence” as a way of supporting the women’s abstinence efforts, is seen as ideal but unattainable, by some pregnant women, and as ineffectual, by others. Male partners, meanwhile, stress their willingness to reduce consumption to a similar degree, if asked by their partners. 

Ultimately, we find that the management of alcohol risk during pregnancy contributes to the (re)production of gendered norms of good parenthood, where the future mother is primarily in charge of the child’s health and wellbeing, and the future father inhabits a secondary, supportive role. 

Keywords: alcohol risk, risk during pregnancy, norms of good parenthood, gender norms