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- Convenors:
-
Myriam Durocher
(University of Amsterdam)
Samuel Thulin (Concordia University)
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- Format:
- Combined Format Open Panel
Short Abstract:
These two sessions explore the links between bodily data and health, from critical and/or creative perspectives. We approach data largely in terms of meaning produced in the context of bodily testing or material sampling (e.g., blood tests, tissue sampling, urine analysis, etc).
Long Abstract:
As concern grows all over the world around widespread health issues, many of which are framed as noncommunicable diseases, data are positioned as key in the management of health risks. While many of these “noncommunicable” diseases are addressed by health authorities via a lifestyle approach centred on data monitoring, some of these conditions are either undocumented/little monitored, or left under-researched in terms of disease causation pathways, revealing how not all bodies and health issues are taken care of equally (e.g., cases of environmental racism, gender-, sex-, or race-based bias in science, etc.).
These two sessions explore the links between bodily data and health, from critical and/or creative perspectives. We approach data largely in terms of meaning produced in the context of bodily testing or material sampling (e.g., blood tests, tissue sampling, urine analysis, etc.).
Questions to be explored include (but are not limited to):
- What kind of health is framed or excluded by these data?
- Whose body/what kind of body is of concern/is absent?
- What is “data” in contexts of health and bodily testing?
- How can we use insights from feminist and Indigenous STS researchers and artists to rethink/disrupt/reclaim data production, mobilization, and meaning-making?
- How are data made to speak of bodies’ materialities, of boundaries and/or links with environments?
- How can creative approaches to data production, mobilization and (re)mediation help disrupt the taken-for-grantedness of data and ideas of objectivity?
- How can creative approaches to data offer a critical take on power as it relates to data?
- Ethical questions surrounding testing/sampling/analyzing bodily matters in the context of health risk prevention or control are also welcome.
The second session will feature creative works on the theme of working with/re-rerouting data and their meanings with regards to bodies and/or health.
Accepted contributions:
Session 1Sammie Jansen (Wageningen University Research RIVM) Marcel Verweij (Utrecht University)
Long abstract:
The human exposome “encompasses life-course environmental exposures (including lifestyle factors), from the prenatal period onwards” (Wild, 2005). Using big data methods, the approach increases understanding of environmental health risks by (more precisely) measuring and integrating physical and social exposures and revealing biological disease mechanisms. It promises to provide evidence for prevention and public health policies.
As precisely measuring and integrating external exposures – e.g. climate, socio-economic factors – is complicated, prominence is given to the use of “omics” technologies and biomarker identification. However, this ‘biologization’ of environmental health risks easily leads to privileging biological individual-level explanations and solutions to managing health risks (Giroux, 2023). Given current (neo)liberal discourses, it is not unlikely that responsibility for managing environmental health risks is assigned to individuals over governments. However, as individuals and governments have different moral reasons and opportunities to promote and protect (environmental) health, responsibilities should be shared (Verweij & Dawson, 2019).
This paper outlines how the exposome approach, despite the holistic conceptualization and ambition to improve the conditions for a healthy life, can also easily reinforce perceptions of individual responsibility. We explore ethical reasons for assigning responsibility for tackling health risks to argue what forms of responsibilization might be unreasonable or unfair. For example, many structural social and environmental factors underlying health risks are unequally distributed along socio-economic gradients and can be largely outside individuals’ control and within the sphere of government responsibility. We explore exposome research strategies to clarify and emphasize collective and governmental responsibility for diminishing environmental health risks.
Myriam Durocher (University of Amsterdam)
Long abstract:
This paper starts with presenting the broad lines of a research project where I compare testing practices in Quebec & Canada dedicated to preventing and controlling chronic conditions associated with food ingestion, such as diabetes, with others dedicated to preventing health conditions associated with the ingestion of pesticides and contaminants. I approach these practices as constitutive of the apparatus dedicated to preventing long-term diet-associated health risks and argue that it not only integrates different approaches to risk and ways of caring for health and bodies, but also that it orients where the onus of responsibility lies when it comes to managing or preventing diet-associated health conditions, playing a role in invisibilizing the environmental factors in disease causation and reinforcing the individualization of health (responsibility) rather than its collectivization. Building on this, I draw on feminist and decolonial approaches to data to reflect on how the data generated in the context of these testing practices (the data themselves, but also the ways in which they are produced and mobilized) contribute to reinforcing existent power relationships that ultimately affect unevenly people’s health.
Fabiana Li (University of Manitoba) Rossio Motta-Ochoa (Université de Montréal)
Short abstract:
We examine how anemia became a public health risk and target of government interventions in Puno (Peru), the standards and technologies used to diagnose anemia, and how local knowledges can expand medicalized approaches to nutrition and health in rural communities.
Long abstract:
Our paper is based on preliminary research that examines how anemia has been defined and why it became a public health emergency in Puno, Peru. Often associated with conditions of poverty, inequality, and marginalization, anemia intersects with discourses around economic productivity, development, and progress. Bodily data showing “iron deficiency” and therefore high rates of anemia (especially in young children and pregnant women) have prompted officials and experts to make anemia prevention a regional and national priority. The availability of rapid tests that measure hemoglobin levels facilitated the detection of anemia and increased awareness of iron deficiency among the general population. Consequently, the prevalence of anemia diagnoses in rural communities marked a shift in how people understand health and nutrition, and children “at risk” became a target of public health interventions. High rates of anemia among populations in situation of poverty may reflect the medicalization of social problems that are inextricably tied to the legacies of colonialism and economic marginalization. Moreover, it puts the focus on individuals, making them the target of campaigns to “improve” their lifestyle, personal habits, and food preferences. Based on documentary research and semi-structured interviews with anemia experts in Peru, this paper aims to address the following questions: How is bodily data translated into lack of iron and used to define anemia? What are the standards and technologies used to diagnose anemia among people from rural communities in Puno? In what ways can local knowledges expand medicalized approaches to nutrition and health in rural communities?
Rachel Washburn (Loyola Marymount University)
Long abstract:
Pulse oximeters are small devices commonly used in clinical contexts to assess patients’ blood oxygen levels. Developed in the early 1970s, finger pulse oximeters work by shining light through the fingertip to establish the oxygen content of arterial blood. Because of the way pulse oximeters use light to determine blood oxygen levels, the scientists who developed these devices assumed that measurements were not affected by factors such as subcutaneous fat, skin thickness, or skin tone. However, by the late-1980s, these assumptions were questioned, especially those related to skin tone. Dozens of studies were carried out by investigators across the United States and elsewhere which showed that finger pulse oximeters modestly overestimated the blood oxygen levels of patients with darker skin tones, an important finding that has implications for medical care. Over the past few years, and because of the COVID-19 pandemic, the accuracy of pulse oximeters has attracted renewed attention, with several leading scientists arguing that the flaws in the devices are an example of systemic racism in healthcare. This paper analyzes the science on which claims about pulse oximeter accuracy, particularly with respect to skin tone, are based. We show that there has been wide variation in how researchers have studied the impacts of skin tone on pulse oximeter accuracy, which has not only contributed to debate in this area but also contributed to the construction of race in and through biomedicine.
Samuel Thulin (Concordia University)
Long abstract:
I propose to present on my ongoing work in diabetic data art (Thulin 2022), with a particular emphasis on my recent project Sensing Sugar (2023), an online artwork that allows visitors to experience and contribute to the production of music and visuals based on blood-glucose data.
Sensing Sugar plays on the relationships between embodied sensations and quantitative data. In daily life, blood-glucose levels trace diabetics’ continual navigation between numbers (blood sugar measurements, grams of carbohydrates ingested, units of insulin injected, minutes of exercise performed etc.) and feeling (the jitteriness, irritability, and weakness of low blood sugar; the sluggishness, brain fog and fatigue of high blood sugar etc.).
Typically, numbers are taken to be the arbiters of how well one has been managing their illness and what the expected outcomes might be. The number of numbers collected and the ways of making them interpretable is steadily on the rise. This has been referred to as a “diabetes data revolution” (Kowalski, 2019) fuelled by developments in sensor technologies, such as Continuous Glucose Monitors (CGMs).
Looking beyond their diagnostic utility, Sensing Sugar proposes to re-connect the blood-glucose measurements that diabetics collect multiple times a day to feeling and affect through the mediation of audio and visual synthesis. The project creates data-driven music and visuals that aim not to provide any therapeutic insights on the data, but to provide a meditation on the aspects of diabetes and data collection that overflow biomedical interpretative logics, offering an alternative way of sensing blood sugar.
Lyndsey Beutin (McMaster University) Cal Biruk (McMaster University)
Long abstract:
Type 1 diabetics are an intensively surveilled category of people, hooked into vast data systems and technological infrastructures in the name of managing their health. This surveillance, framed as benevolent and rendered as a form of care, is anchored in the idea that technology brings freedom from the constraints of sickness. Yet, people with type 1, who live constantly connected to biometric technology in order to survive, offer important alternative perspectives on freedom, health, and technology that can provide insight to the fields of surveillance studies and science and technology studies. In this session, Beutin and Biruk discuss using photo-elicitation interviewing and zine-making methods to document how sick people envision and enact fabulous lives beyond the data, technologies, and metrics that often govern our bodies, minds, and health management. By focusing on type 1 diabetics, the larger project aims to build an archive of now-obsolete diabetic technologies that did not work as promised. In so doing, it offers a critical and historicized material reflection on the dominant discourse that technology is liberating and will either fix or save sick people from ourselves, when in fact, it is often our tinkering, intuition, and embodied knowledge that makes the technology livable in spite of its pitfalls. During our presentation, we will engage in a group photo-elicitation exercise and a “scribble-rant” zine-making exercise, where audience members will get to try out the methods of this project, share insights that arise, and comment on the potential and limitations of our creative methodology.