Click the star to add/remove an item to/from your individual schedule.
You need to be logged in to avail of this functionality.
Log in
- Convenors:
-
Ingrid Metzler
(Karl Landsteiner University of Health Sciences)
Erik Aarden (Alpen-Adria University Klagenfurt)
Send message to Convenors
- Chairs:
-
Erik Aarden
(Alpen-Adria University Klagenfurt)
Ingrid Metzler (Karl Landsteiner University of Health Sciences)
- Format:
- Traditional Open Panel
Short Abstract:
This panel seeks to bring together scholars who work on the envisioning, development, use and/or governance of testing in various domains and arenas of bio-medicine, in order to discuss transformations in the phenomenon of testing and the normative positioning of STS work in this field.
Long Abstract:
This panel seeks to bring scholars into conversation that engage with testing in bio-medicine, e.g., by exploring the development of tests; their uses in clinical or (public) health practices; their assessment; or their regulation. We seek to shed light on how biomedical tests are simultaneously governed and used as governing devices.
Over the last three decades, scholars in STS and related fields have engaged with testing in bio-medicine, often focusing on particular domains or arenas. By way of example, from the late 1980s on scholarship has engaged with genetic tests, as these were envisioned, developed, and used in clinical and/or public health practices. They have also engaged with the regulations of genetic tests. Simultaneously, work in the sociology of diagnosis has studied how testing in clinical practices contributed to ‘making up people’. More recently, scholars have engaged with the development, use, and regulations of tests in emerging fields such as translational sciences or precision medicine. They have also drawn attention to the political economies of testing industries and the multiple bodies and practices involved in their regulation and governance. Last but not least, a body of scholarship has explored the ways in which biomedical tests have been developed and used as governing devices in global health.
In this panel, we seek to use testing in bio-medicine as a boundary object that allows us to open up a conversation between these areas of research. We invite empirical and theoretical contributions that engage with the envisioning, development, uses, assessment, and regulations of testing in diverse bio-medical domains and arenas. Attending to the conference theme, we aim to highlight how different forms of testing travel, how the phenomenon of testing transformed over time and how we as STS scholars take normative positions vis-à-vis testing in biomedicine.
Accepted papers:
Session 1Adam Hedgecoe (Cardiff Unviersity)
Long abstract:
Drawing on ethnographic observations in over 290 clinical team meetings and covering a range of conditions from inherited heart disease, cancer, developmental delays and dysmorphia, this paper seeks to explore professional decision making around clinical genomic sequencing. With a specific focus on decisions about a particular kind of ambiguous result – called Variants of Uncertain Significance (VUS) – this paper examines the role of the perceived ‘actionability’ of specific genomic results in prenatal testing. The key insight centres on the way in which clinicians’ beliefs about how parents will react to a result feed back into decisions about the status of such ambiguous results, builds on previous STS work around actionability from Nicole Nelson, Alberto Cambrosio and Stefan Timmermans.
Jia-shin Chen (National Yang Ming Chiao Tung University)
Long abstract:
Heart rate variability (HRV) testing captures the fluctuations in heartbeats, generating parameters believed to mirror various aspects of autonomic nervous system activity. Widely integrated into smartwatches and clinical tools, it serves as an indicator of physiological functions in both healthy and unwell individuals. In Taiwan, HRV testing has been utilized within a context known as autonomic imbalance (AI), an unofficial diagnosis encompassing diverse medically unexplained symptoms associated with anxiety, depression, or other mental distresses. Some physicians employ HRV testing as 'scientific' evidence of AI's presence and pathology to categorize and tailor treatments for those deemed 'imbalanced.' However, the acceptance of this methodology varies significantly among patients and physicians. Despite its extensive usage in research and practical settings, HRV testing does not uniformly command the scientific credibility claimed for it. This case study offers an initial glimpse into the societal and scientific dynamics surrounding a biomedical test, illustrating the concept of glocalization. It prompts deeper exploration into how technology navigates, interprets, and reshapes by showcasing how a global technology both validates and disputes a condition rooted in local biology.
Hanna Goldberg (Santa Clara University) Alexis Walker (Columbia University)
Long abstract:
In July 2023, a Business Today headline jubilantly proclaimed: “Harvard scientists unveil anti-aging drug combination to reverse aging in record time.” The article details the work of David Sinclair, a Harvard genetics professor whose team had “reprogrammed” cells to reverse cellular aging, as they described it. Sinclair’s work is part of the growing “epigenetic clock testing” industry, where companies have begun offering tests to give customers an estimation of their “true” or “epigenetic” age (as opposed to chronological age), as well as supplements and other interventions meant to reverse aging effects. This industry has been led by “scientist influencers” such as Sinclair, who have combined their social media presence and university prestige into substantial business interests – much as university tech transfer offices and innovation regulators of the past several decades have promoted. This paper presents an analysis of the phenomenon of the scientist-as-influencer, using epigenetic clock testing as a key site for understanding the evolving role of scientific experts and expertise in American public life. We base this analysis on an in-depth reading of the online world of epigenetic clock testing companies and leadership: on social media (Twitter/X and TikTok); company websites and public relations materials; customer review sites; and mainstream, business, and tech news sites. We argue that companies selling epigenetic age testing are drawing on shifting cultural narratives about aging and wellness, and are indicative of the future of biomedicine being encouraged by today’s “innovation infrastructure” in the United States – including regulatory and institutional infrastructure.
Lennart van der Molen (Radboudumc) Chiara Silipigni Marianne Boenink (Radboud University Medical Centre) Rik van der Linden (Maastricht University) Harro van Lente (Maastricht University) Edo Richard (Radboud University Medical Centre) Kris Leeuwenberg (Radboudumc)
Long abstract:
Research on biomarkers for brain diseases has led to new knowledge of disease pathways. This research is fueled by the hope that biomarker tests eventually will predict, diagnose or prognosticate brain diseases and help selecting patients for therapy and monitoring treatment effects. The focus on biomarkers has become the dominant direction in research on brain diseases (‘biomarkerization’), at the expense of other directions. Moreover, the increasing use of biomarker tests also affects the conceptualization of the diseases and the experience of patients and health systems. In an interdisciplinary project we analyze the broader impacts of the ongoing ‘biomarkerization’ of brain disease and how these are evaluated by stakeholders.
In this presentation, we compare the emergence of biomarkers in disease criteria and diagnostic guidelines for Multiple Sclerosis, Alzheimer’s disease and Parkinson’s disease, focusing on the resulting shifts in conceptualization of these diseases. An important aspect that we will address is the moment of diagnosis, is this becoming increasingly early, shifting from the symptomatic phase to prodromal and preclinical phases? Furthermore, we will discuss shifts in the goals that guide the revisions of the diagnostic criteria, and the reasons for these revisions. In addition, we will discuss the number of requirements for diagnosis that are captured by the criteria. These developments have the potential to significantly impact both clinical and research practice for brains diseases and thus we discuss how these findings may inform a generic analysis of biomarkerization in the domain of brain diseases.
Ronja Tammi (University of Helsinki)
Short abstract:
This paper, based on ethnographic fieldwork in the Finnish Red Cross Blood Service, analyses the ways testing is used to enact and determine the (un)ethicality of donated blood, blood products as well as the people and institutions handling and governing it.
Long abstract:
Blood can be considered as a classical topic—as a metaphor and as an actual human biological material—in social sciences studying phenomena of the medical world, kinship, and donation practices. However, since Titmuss’s famous book published in 1970, the world of blood and its donation have come a long way—or have they? In this paper, I examine how the ethics and moral properties of donated human blood, as well as the people donating, handling and governing it, are enacted in the testing practices of the Finnish Red Cross Blood Service's (FRCBS) everyday work.
This paper stems from ethnographic fieldwork and expert interviews collected in 2023–2024 at the FRCBS. The fieldwork was conducted at the main FRCBS site, which is an extraordinary place: all blood donated in Finland is transported there, where it is separated and processed into various blood products, tested for infectious diseases as well as for blood groups, and eventually sent to hospitals. In this paper, which is still very much a work-in-progress, I focus on looking into the ways blood products sold for hospitals, as well as their handlers, governing institutions and donors are enacted as (un)ethical and how value is given for donated human blood in these everyday practices.
This paper if part of my doctoral research project, in which I study the everyday ethics of donated tissues in Finland, analysing egg, blood and corneal donation practices in parallel. In my project I am particularly interested in the role and meanings of genetics in these ethical practices.
Ilaria Galasso (Technical University of Munich) Stuart McLennan (Technical University of Munich)
Short abstract:
This paper examines responsibilization linked to genetic tests in the context of childhood obesity. We argue that the emerging dimensions of responsibility for families are inadequate, and we call for public involvement in the governance for the appropriate management of the risk assessment.
Long abstract:
This paper explores the role of biomedical tests in the context of childhood obesity, by focusing on the consequences in terms of reshaped dimensions of responsibility. The increasing rates of obesity in the global population is among the most serious public health emergencies of our time. The increasing use of genetic testing offers an important opportunity to prevent and treat obesity, especially in children, by timely identifying and targeting its molecular causal mechanisms, but it also raises important concerns. The interplay between molecular and socio-environmental factors is particularly relevant in the context of obesity: we interrogate how a genetic-based risk-assessment approach to obesity redistributes responsibilities between individual families and institutions, and the effects in terms of costs, stigma and calls for action. Grounding ourselves on the STS literature on responsibilization and on personal and social responsibility in health, we argue that the costs and responsibilities (in terms of healthcare, screening, and lifestyle changes) redistributed by genetics of obesity, contrasted with the socioeconomic constraints to the “control” condition of responsibility, pose novel challenges to equity in health. We conclude that institutional support to address specific socioeconomic and psychosocial barriers is vital for the equitable efficacy of genetic approaches to obesity, and we call for the consultation and the involvement of obesity patient advocates as well as the general public in the governance of genetic testing and in the interpretation and the communication of the assessed risk.
Mady Malheiro Barbeitas (CNRS) Koichi Kameda de F. Carvalho (University of Bordeaux)
Long abstract:
In March 2020, the WHO asked all countries to invest into expanding PCR testing to control the spread of the virus causing Covid-19. However, this recommendation was not anticipated or called into question due to the difficulties involved in adopting tests in different countries, as well as the logistics involved in transporting samples, training technicians, and supplying reagents.
In Brazil, the supply of COVID-19 tests has been shaped, on the one hand, by the country's scientific and industrial capabilities, and on the other, by its political context. The country has a long track record in managing health crises, such as the HIV/AIDS epidemic, where the state played an important role in formulating policies focused on access to biotechnologies or also in the research and production of innovations for infectious diseases. However, the political context during the COVID-19 pandemic, characterized by divergent views on the importance of the epidemic within the government, has led the State to gradually lose its leading role in managing the health crisis.
This paper aims to understand what was at stake in the formulation of the COVID-19 testing policy in Brazil in the first year of the pandemic. It also analyzes the different strategies used by national innovation actors to expand diagnostic capacity, revealing the place of testing within the management of the epidemic. The paper draws on interviews (25) with researchers, industrials, policymakers, and testing laboratories, as well as on a visit to a public testing facility.
Katerina Vlantoni (National and Kapodistrian University of Athens)
Long abstract:
During public health crises, from the HIV/AIDS to the recent COVID-19 pandemic, various versions of testing and the discussions surrounding them have been ubiquitous. The configuration and appropriation of medical diagnostics has played a crucial role in shaping policies designed to address these crises, as it affected medical practice and even intersected with ideas about a disease. The use of tests, often contested in practice, has diverse effects in medical practice, medical jurisdiction and public health policy. Noticeably, during the COVID-19 pandemic, mass testing has been crucial in shaping medical responses as well as overall public health interventions.
In this paper, I am going to present a first round of findings from a newly funded research project, which seeks to contextualize the configuration and appropriation of medical/biomedical testing in a specific socio-historical setting, that of the Greek society. The project, called CrisisTesting, is focused on the study of the localization and adjustment of testing in this country, paying close attention to the sociotechnical tensions between testing and public policy. The CrisisTesting research team is especially interested in the technical differences of tests, as these invisibly privilege certain social policies. The research team studies these differences in connection to their social appropriations in four cases, referring to health crises that span from HIV/AIDS to COVID-19. Drawing on STS and History of Science, Technology and Medicine perspectives, CrisisTesting focuses on the interplay between developing, implementing and communicating testing practices as a means of public health policy.