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This talk challenges a key tacit assumption about the policy potential of epigenetics, namely, that it has great value for action on the health consequences of environmental exposures and the embodiment of social inequalities. Epigenetic modifications such as DNA methylation get increasing attention as biological correlates of social conditions, lifestyles and/or environmental exposures. Yet, the actionability of this information is not clear. Some have criticized that epigenetics would only bolster the idea that individuals are responsible for their exposure to hazardous environments. Others have questioned the added value of this information to existing policy claims addressing complex entanglements of health and environmental and/or structural inequalities. These scholars argued that interindividual epigenetic variation can hardly be connected to the social or environmental processes that produced it.

Building upon six years of fieldwork, my talk explores the technical and experimental work invested into connecting structural policy-level interventions with epigenetic knowledge of exposure-related disorders. The connections between social justice and epigenetics rest upon a distinct kind of expert work “complexifying” (see Chiapperino 2024) the experimental designs and knowledge claims of this research. Some of the field’s epistemic norms and values are used for this purpose, including those relating to: a) the multiple social-biological transitions shaping the epigenome; b) the epigenetics of culture and ethnicity; c) the effectiveness and viability of social and environmental interventions into the epigenome. Is an epigenetic science supportive of complex politics of health and environmental injustices just a mirage, or a concrete opportunity for future public health promotion?

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Environmental epigenetics is a bourgeoning research approach within the life sciences accompanied by promissory rhetorics about its potential therapeutic benefits. Through a discourse analysis of scientific publications and qualitative interviews with researchers from neurosciences and molecular biology, our paper explores why approaches from epigenetics have been adopted in psychiatric research: scientists affirm three main ways of applying epigenetics, mobilising the clinical relevance of epigenetics and making it appealing to actors in applied research. As we unfold, this definition of relevance builds an essential bridge between scientists across different research fields. However, we will carve out struggles of doing relevant research in epigenetics. These struggles materialise in three points of critique the epigeneticists further towards scientists in applied fields concerning the acceptable level of uncertainty for epigenetic knowledge to be considered relevant. To sustain their promises of relevance, epigeneticists propose research consortia as a fix that, however, cannot solve fundamental epistemic problems firmly inscribed into the field’s research practices: while environmental epigenetics is hyped as a solution to public health problems, there are still too many epistemic problems in human epigenetics to deliver on this promise. The article locates these ambivalent dynamics in a fast-paced postgenomic context in which epigenetics is both presented as an innovative solution to the global mental health challenge and as a fragile knowledge domain. With our paper, we contribute to STS literature to explore how scientists attempt to do relevance within a funding landscape that incentivises quick translations rather than exploratory research.

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The sciences of environmental epigenetics and the Developmental Origins of Health and Disease (DOHaD) have become central in efforts to understand how early-life experiences impact health across the life course. This paper draws on interviews with epigenetic scientists and laboratory observations in the United States and Canada to show how scientists enact epigenetic biomarkers as molecular vestiges of early life and the consequences this has for postgenomic approaches to health, risk, and intervention. We argue that this process demarcates early life as the optimal time to study and intervene in health and positions biomarkers as conceptual and methodological tools that scientists mobilize to reimagine early life environments. These environments include Positive Childhood Experiences (PCEs), which reflect a novel epistemic object in behavioral epigenetics. Though distinct from widespread research on Early-Life Adversity, we show how PCEs continue to essentialize experience in gendered and individualized ways. Further, this paper suggests how the focus on molecular vestiges of early life also allows scientists to capitalize on uncertainties in epigenetics and DOHaD to create stability despite epistemological and biological unknowns. These findings contribute new perspectives to social studies of epigenetics, biomarkers, and the production of novel epistemic objects in postgenomic knowledge practices.

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This paper thinks with and through the neuroscience of emotion to interrogate the boundaries of ‘emotional behavioral disorder’ (EBD), a disputed psychiatric and special-education category, as a recognized disability in education. Historically, EBD has served as a catch-all bin for children’s underspecified mental health difficulties, and has controversially overlapped with categories of socioeconomic marginalization. Yet, emotional distress and aggression present real challenges in the everyday management of children’s school participation and rights to education. The controversies surrounding EBD are especially acute in Israel, where the number of school children classified as having an ‘emotional-behavioral disorder’ has increased seven-fold in the past two decades, and where policy reforms increasingly call for the mainstreaming of special-needs pupils in general (not special education) classrooms.

Based on semi-structured interviews with 45 homeroom teachers in general-education classrooms, and critical analysis of scientific and policy documents, we characterize the blurry boundaries of EBD and how teachers apprehend its nature and legitimacy in elementary vs. secondary schools. Drawing on critical neuroscience and feminist disability studies, we show that EBD is configured through teachers’ locally specific understandings of children’s brains, emotional experience and moral behavior; and we highlight how teachers cultivate practices of care around EBD.

Findings call attention to the culturally-specific translation of child mental health epistemologies in local contexts, and to certain conditions that may drive the fashioning of school as a therapeutic environment.

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The last two decades have seen increasing recognition that concussion and other forms of traumatic brain injury may constitute risk factors for Alzheimer’s-like dementias. Unsurprisingly, one consequence of the contemporary ‘concussion crisis’ is the increasing use of animal models aimed at better understanding the neurodegenerative effects of brain injury in humans. In order to better comprehend this emerging field of research, in this presentation I draw upon my observations and interviews with scientists undertaking pre-clinical research and studying brain injury in animals. Following queer theorist Mel Chen, my particular approach is to understand “animality” and “humanity” less as essences that are intrinsically attached to particular species (a mouse, a sheep, a human), than as “sticky” concepts that may-or-may-not be bound to particular bodies. In other words, I seek explore the presence of the human in the animal, and the animal in the human. Based upon my ethnographic work, I suggest that “the human” is ever present in these animal laboratories, not only as an imagined end-point beneficiary of research, but also in the body of a mouse that staggers under a concussive blow, the neuropathological brain slice of a bovine studied under a microscope, and in laboratory protocols stressing a commitment to social justice. I focus in particular upon the raced and gendered implications of these interspecies entanglements, suggesting that while scientists are committed in their progressive political and research agenda, there remain troubling resonances in this particular transposition of human and animal.

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This multilevel study examines the construction of eligible patients in neuroscience, focusing on the example of Deep Brain Stimulation therapy in Italy and Germany. We assert that regional regulations and stakeholders profoundly shape the definition of an eligible patient.

Long abstract:

Deep Brain Stimulation (DBS) is widely considered as a promising neurotechnology for treating various neurodegenerative diseases. However, it is simultaneously surrounded by controversies regarding its clinical application, stemming from historical predecessors such as lobotomy and evoking both sci-fi aspirations and fears. Consequently, DBS is subject to high level of regulation, with only specific patients eligible for the treatment. This study aim is to analyse the construction of eligibility for DBS Italy and Germany through three levels: the regulatory framework; healthcare predictionaries in settings, and patients’ associations. While guidelines may appear uniform at the European level, our exploration underscores the significance of regional organizational environments in the decision-making processes, as well as the importance of non-formal criteria for offering patients DBS. This results in varying patient profiles and expectations, promoting reflection on disparities in health justice within clinical neuroscience. Our data basis includes interviews, ethnographic field notes, and other relevant documents. We assert that regional regulations and stakeholder scope significantly influence the DBS utilization, thereby profoundly shaping the definition of an eligible patient.

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Amidst the rapid advancements in neurotechnology, there has been an intensified discussion on the ethical implications they entail. Our research shifts the focus to public discourse on neuroethics, a topic not extensively covered in recent literature. While existing work predominantly centers on traditional survey methods, this paper addresses a critical gap by employing computational methods to investigate public attitudes toward neurotechnology.

Our study uses neurotechnology-related YouTube videos, extracting video transcripts and users’ comments. With a wide-ranging search string encompassing expressions such as 'brain implant,' 'BCI,' and 'brain chip,' we assemble a dataset of over 1,700 videos with more than 900,000 connected comments. We ask: What are the general public’s prevailing ethical concerns and sentiments concerning neurotechnology? Informed by methodologies akin to previous studies on emerging technologies such as autonomous vehicles, we use word embeddings, a computational text analysis method. Here, we leverage the taxonomy of neurorights, to construct word groupings representing freedom of thought, the right to privacy, and the right to mental integrity, serving as top-down filters in our analysis. This approach allows us to discern the semantic relationships between words, thus unveiling the contextual associations that emerge when neurorights-related terms like 'privacy' are mentioned in our sample. In examining the ethical considerations of neurotechnology, our study adopts an enhanced anticipatory ethics approach, emphasizing the significance of public narratives and lay perspectives. Our analysis contributes not just to the field of neuroethics but also enriches discussions on the role of public discourse in shaping the trajectory of emerging technologies.

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Long abstract:

Recent advances in neuroscience entail a variety of ethical questions. Ethical inquiry to date has focused primarily on the outcomes of this research, particularly technological applications, while few scholars have addressed questions of research ethics. Concurrently, neuroscience research introduces another level of complexity, as it tends to operate in diverse research settings. These range from small patient numbers or even individual patients involved in the research to large patient cohorts. Neuroscience therefore emerges within the tension between research settings of different scales on the one hand and the demand for widely applicable research ethics guidelines on the other. The question as to how these settings being embedded in different scales affects what it means to practice research ethically, however, has been reflected only scarcely to date.

In this paper, we draw on research from the Technical University of Munich’s Innovation Network for Neurotechnology in Mental Health (NEUROTECH), a four-year interdisciplinary research initiative dedicated to the study and treatment of mental dysfunction. As embedded ethicists and social scientists within the network, we accompany two research groups: One involves a small number of patients in frequent intensive research interactions to advance the scientific understanding of language disorders using brain-computer-interface technology. The other works with large sets of patient data to measure and modulate brain activity in patients with chronic pain using electroencephalography. By tracing the forms of social relations that emerge from our empirical analysis, we develop propositions for an ethics of scale in neuroscience research at the art.