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Vital Circulations // Vital Data

White Rose Vital Circulations Network Symposium 3

Universities of Leeds, York and Sheffield

Friday July 22nd 2022, 12:30 – 16:45 BST (Zoom)

This one-day online symposium considers the theme of data circulations in the broad context of the ‘vital’ – bodies, life and death – and its various circulations – the biotic or pathogenic, the infrastructural, the digital, the transplantable and the heritable. Too much of a focus on matter in these contexts might elide the role that vital data play in these flows; as a virus and its mutations move around the world, calls come for data to be shared openly between nations. Before human tissue is shipped internationally for clinical transplant, donor and patient data must be checked for compatibility. Data and matter become entangled in vital circulations. As such, with this third of the Vital Circulations symposia, we explore how data – and the values and practices surrounding them – constitute an important current in these contemporary ‘vital circulations’. We do this through bringing into conversation a cross-disciplinary range of provocations from the arts and humanities, critical data studies, and the social sciences.

Confirmed speakers include:

• Itzelle Medina-Perea, The University of Sheffield

• Ilaria Galasso, University College Dublin

• Ernesto Schwartz-Marín, University of Exeter

• Eva Hilberg, The University of Sheffield

Presentations will include discussions of citizen-led forensics, the use of data mining for drug discovery, notions of ‘real world evidence’ and ideas of collective good in the context of genetic research.

Schedule:

12:30-12.45 Opening: ‘Vital Circulations’ | Jieun Kim

12:45-13:00 Vital Circulations // Vital Data | Ros Williams

Session 1 (Chair: Lijiaozi Cheng)

13:00-13:30 The next data revolution? – The promises of Real World Evidence | Eva Hilberg

13:30-14:00 Patterns in Practice – beliefs, values and feelings in practitioners’ engagements with data mining for drug discovery | Itzelle Medina Perea

14.00-14.30 Discussion, with intervention from discussant Paul Martin

Refreshment break (30 mins)

Session 2 (Chair: Ros Williams)

15:00-15:30 Genetic data and the collective good: participants as leaders to reconcile individual and public interest | Ilaria Galasso

15:30-16:00 Citizen-Led Forensics: Participatory challenges to the politics of vitality in the search for the disappeared in Mexico | Ernesto Schwartz-Marín

16:00-16:30 Discussion, with intervention from discussant Marie-Andrée Jacob

16:30-16:45 Concluding remarks to close (Ros Williams and Paul Martin)

Background:

Over the last two years, we’ve been exposed to daily-updated data dashboards – figures of infection, hospitalisation, mortality, vaccine uptake. These digits might be understood as numeric representations of bodily states – disease, illness, death. They might be what most of us think of at the moment when we’re invited to consider how ‘vital’ data circulate. Yet they are part of a global mosaic of such data that do (and sometimes do not) flow; from the promises of expansive health data platforms and machine learning, the possibilities of citizen-led attempts to collate and manage health data, to the material complexities of infrastructural interoperability, and professional and public reticence about data giving, sharing and use.

Some of these vital data are heavily commercialised, their production encouraged by massive corporations who’ve increasingly sought to monetise well-established practices of tracking ourselves (Sharon 2018; Williams et al. 2020). These might be understood as another asset in the bow of what increasingly is referred to as platform capitalism (Snricek 2016). Other vital data have very different biographies. For example, plans to create links between the UK’s National Health Service (NHS) patient data and commercial and academic researchers have stalled multiple times; still other NHS data still managed to find their way into the Government’s Home Office, being used in live immigration cases (Medina Perea et al. 2020; Fitzgerald et al. 2020). Then there is the increasingly data-driven world of biomedicine. Genomics, regenerative and personalised medicine, pharmaceutical development – these fields (or at least our imaginaries of them) all rely on the fast, high yield of vital data to generate treatments and, perhaps, profit. What are the contours of these circulations, what constitute these data, and what values and practices delimit their circulation and use? Simultaneously, these data might also delineate difference: ethnic- or gender-specific drug outcomes might reify differences in unexpected ways, as data potentially participate in ‘othering’ us (Pollock 2012)

Through the symposium, we seek to ask:

• In what ways do vital data circulate, or fail to flow, in the broader context of vital circulations?

• In what different contexts do these vital data flows (and stoppages) take place? What values are entangled in these contexts? On what practices do they rely?

• How might vital data play a role in (re)producing difference, or othering certain individuals or groups?

• In what different contexts – the commercial, the commons – might vital data flow, and with what consequence?

The symposium is part of the wider Vital Circulations network, a ESRC White Rose University Consortium-funded collaborative network. It is the third in a series of symposia, including Biomes, Bodies and Buildings and Tissue Donations Beyond the Gift of Life. Discussions from these symposia will be drawn into a final network symposium in Autumn 2022, and contributors will be invited to participate in a network-wide special issue.

Abstracts and speaker bios

The next data revolution? – The promises of Real World Evidence | Eva Hilberg, University of Sheffield

A quiet epistemic revolution is underway in the field of pharmaceutical regulation – purportedly opening medicine’s highly specialised decision-making processes towards influence from the ‘real world’. Real World Evidence (RWE) is the emerging paradigm promising to transform the field of pharmaceutical regulation to include evidence derived from Real World Data (RWD), that is, data generated in non-randomised controlled (RCT) study designs in a potentially radical turn away from the erstwhile ‘gold standard’ of medical research. There is considerable emphasis on the experience of patients within this concept of the ‘real world’, giving rise to new hopes about inclusion and representation of both experience and outcomes. This hype around RWE is not accidental, but actively promoted by central institutions such as for instance the FDA and the US’ 21st Century Cures Act (2016). However, nothing about this ‘real world’ is clear-cut, as other post-approval gatekeepers are conducting their own assessments of RWE’s promise, leading to fundamental regional disconnects especially where it comes to evaluating the actual quality of the data being generated in different ‘real world’ modalities such as registries, insurance data collections, and more individualised digital health applications. This paper argues that the resulting tensions are effects of an instance of promissory regulation (Hogarth & Martin 2021), which can lead to a further real-term fragmentation of access to treatments and may fail to deliver on the hopes of already underserved patient communities such as those with rare disease.

Eva Hilberg is a Post-doctoral Research Associate at the iHuman Institute (Sociological Studies), University of Sheffield, where she works on a Wellcome Trust-funded project on ‘Orphan Drugs: high prices, access to medicines and the transformation of biopharmaceutical innovation’ (PI: Prof. Paul Martin). Her previous work analysed the use of new technologies and intellectual property rights in the definition of global health priorities, and has been published in ‘BioSocieties’, ‘Third World Quarterly’, ‘Critical Public Health’, ‘Social Science and Medicine’, and ‘Sociology of Health and Illness’.

Patterns in Practice – beliefs, values and feelings in practitioners’ engagements with data mining for drug discovery | Itzelle Medina Perea, University of Sheffield

The use of AI techniques in drug discovery has a long history with waves of interest dating back to the 1960s. However, similar to other domains, the last couple of decades has seen renewed interest fuelled by the rapid growth of available data, the increase in computing power, the development of new methods for processing data, and the optimisation of machine learning algorithms. These developments have provoked mixed reactions within the drug discovery community. They have brought excitement and enthusiasm, but also fear, anxiety and scepticism. Many have argued that the current AI hype overlooks many limitations of these techniques and raise concerns about their black-boxed nature. Such beliefs, values and feelings play out as complex power dynamics among practitioners across the drug discovery pipeline. I will present our early analysis of a series of interviews, focus groups, diaries and observations with a team working on a drug discovery project at a major UK pharmaceutical company, reflecting on how our participants’ beliefs, values and feelings about machine learning techniques and practices in this context are shaping their culture of practice and how they relate to one another and the people impacted by their work

Itzelle Medina Perea is a postdoctoral researcher at the Information School, University of Sheffield, where she also completed her PhD in 2021. She’s working on Patterns in Practice (PIP), an AHRC-funded project that is exploring how practitioners’ beliefs, values and feelings interact to shape how they engage with and in data mining and machine learning– forms of ‘narrow AI’. PIP investigates three different – and contrasting – contexts: pharmaceutical drug discovery, higher education learning analytics and arts practice. The project runs from August 2021 to February 2024. She is also part of Living With Data, a research project that aims to understand people’s knowledge and perceptions of data practices, and what they think constitute ‘fair’ data practices. As part of her PhD research, Itzelle explored how sociocultural values interact with material conditions to shape “data journeys” in the UK health sector, focusing on the reuse of patient data for research.

Genetic data and the collective good: participants as leaders to reconcile individual and public interest | Ilaria Galasso, University College Dublin

This paper problematizes the notion of collective good in the context of genetic research and juxtaposes consequentialist and deontological ethics around appropriating and using genetic data. It scrutinizes the frictions between public and individual interests, and between the duty to share (in the name of the “public good”, Harris 2005, Schaefer et al. 2009, Rhodes 2017) and the right not to share (in the name of individual sovereignty, Archard 2008, Beauchamp 2010) genetic data. This paper is grounded on documentary analysis and fieldwork interviews with participant representatives or research leaders concerned with participant protection and involvement in leading genetic research projects (All of Us in the US and Genomics England in the UK) or around genetic data controversies. It focuses particularly on two recent controversies: the case of the UK institute Wellcome Sanger accused of planning unauthorized commercialization of African DNA samples (Stokstad 2019), and the case of the company Genuity Science planning genetic research on brain tumor samples in Ireland with no explicit patient consent (Noteworthy 2020), and then transferring Irish genetic data to a US-based company (Noteworthy 2021). It questions the link between genetic data use and the collective good and concludes by advocating for participant co-governance and co-leadership in genetic research, especially when minorities or vulnerable communities are involved. Moving beyond informed consent and participant/public consultation and engagement, we argue that if genetic research is led or co-led by community representatives, such patient governance can prevent exploitation and promote transparency and trust, fostering the equitable pursuit of the collective good while protecting participant sovereignty. The paper concludes by opening up this argument to the concept of global good and the concerns around the involvement of low-income countries in genetic research: it advocates for investments on research conducted BY them rather than ON them to overcome the risk of exploitation due to power imbalance (Skloot 2010, Stokstad 2019), and the potential “distraction” from the most urgent global health needs (Bayer and Galea 2015, Rao 2016, Wonkam 2021).

Ilaria Galasso is a postdoctoral researcher in the MISFIRES ERC project on collaborative innovation in healthcare for the collective good, at University College Dublin. She has a background in ethical and political philosophy and philosophy of science, she did her PhD in Science and Technology Studies at the European School of Molecular Medicine based in Milan. Ilaria works in the area of political philosophy of biomedicine, with a primary interest in social equity, health equity, and the connections between the two: her research analyzes medical innovation from an ethical and political perspective, by considering the possibly deriving benefits and their distributions and accessibility, in relation to justice, social inequalities and the social determinants of health. Since April 2020 she also collaborates with the multinational social science consortium “Solidarity in Times of a Pandemic”, examining how people responded to the COVID-19 pandemic and the ensuing policy measures, and why, by listening directly to them.

Citizen-Led Forensics: Participatory challenges to the politics of vitality in the search for the disappeared in Mexico | Ernesto Schwartz-Marín, University of Exeter

My work explores the intersections between (in)justice and science in Latin America. I am convinced that ethnographic explorations of how science as practice— and regulatory ideal— shapes our political imaginations provide powerful vantage points for academic critique, but also for social action and interventions. Therefore, I combine participant observation with participatory action research to create citizen-led interventions to gather DNA to search for the disappeared, learn about grass-root intelligence units to tackle kidnapping in Mexico, or think how cultural and digital product such as videogames or soap operas can catalyse meaningful social change oriented towards justice. In this talk I will explore the challenges of mobilising vital components of our bodies such as DNA to create bridges between those absent, or those buried in clandestine mass graves across Mexico. My aim is to elaborate and explore the ways in which my own work creating alternative forms of DNA biobanking with relatives of the disappeared seek to push certain socio-technical boundaries, while at the same time reinforcing the very practices it hoped to challenge. I will explore the manifold ways in which participatory challenges to state centred practices that seek to monopolise, steer, and own vitality have changed me as a researcher, but also the wider discourse on political participation and forensic evidence in Mexico and Latin America. My talk will seek to uncover the thorny and intimate work of caring for vital data in the search for the disappeared in Mexico, while providing a candid view of the dynamics and power plays that have shaped our own participatory experiments. In terms of theory, I will expand and enrich notions of vulnerability, data justice and feminist Science and Technology Studies in context of wide social injustice, conflict and violence such as the current ‘War on Drugs in Mexico’, that according to the Mexican government has produced ~350,000 violent executions and over 100,000 disappeared persons in the last 15 years.

Ernesto Schwartz-Marín is a Science and Technology Studies scholar working in the fields of biomedicine, forensics, and citizen science at Exeter University. Ernesto’s works explores the development of participatory models to intervene in humanitarian crises via grass-roots databases, and citizen-led science, he has been Principal Investigator in two ESRC Transformative research projects: Citizen-Led Forensics and Data Justice Project, (2018-21), and Co-PI of large Newton Fund grant that sought to understand and tackle kidnapping in Mexico, Colombia and the US border. His research on genomics, forensics and coloniality has been published in Social Studies of Science, Sociology and Social Research.

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