Publications
Lury, C.

in M. Biagiolo and M. Sunder (eds) Academic Brands: Distinction in Global Higher Education, 2022

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The chapter describes the emergence of MyUniversity, which it describes as a personalized generic. MyUniversity is understood to be a response to the saturation of the HE sector with sameness, in which the need to be distinctive is propelled by rankings. As personalized generics, universities are able to generate value and difference from the ways in which students are identified as ‘one of a kind’ in conjunction with their own creation as ‘a kind of one’.

Keywords:

Personalization, Customer Relations Management, platformization, datafication, education and generic.

Celia Lury ‘”One of a kind”’: MyUniversity as a personalized generic’ in Academic Brands: Distinction in Global Higher Education, edited by M. Biagiolo and M. Sunder. Cambridge: Cambridge University Press, in press.

Viney, W., Day, S., Bruton, J., Gleason, K., Ion, C., Nazir, S.

Sociology of Health & Illness, 2022

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Using interview and observational data from a busy and research- intensive breast cancer service in the United Kingdom, we discuss recent developments in personal-ised medicine. Specifically, we show how clinical and research practices meet in clinical pathways that are reconfigured in response to changing approaches of diagnosing, monitoring, treating and understanding cancers. Clinical pathways are increasingly sensitive to changes in evidence deduced through new technolo-gies and therapies as well as decisions based on inten-sive, iterative analysis of data collected across a range of platforms. We contribute to existing research by showing how the organisation of clinical pathways both maintains established clinical practices and responds to new research evidence, managing a threshold between evidence- based and experimental medicine. Finally, we invite comparisons with other forms of personalisation to understand how they depend on the ‘real time’ collection, analysis and application of data.

Keywords:

Breast cancer, clinical pathways, personalisation, personalised medicine, translational research

Viney, W., Day, S., Bruton, J., Gleason, K., Ion, C., Nazir, S., & Ward, H. Personalising clinical pathways in a London breast cancer service. Sociology of Health & Illness. 2022; 44: 624–640. https://doi.org/10.1111/1467-9566.13441

Day, S. Viney, W.

2022

This short booklet provides an overview of our research and research findings in a London breast cancer service. We found that ‘personalised’ approaches were transforming the treatment of breast cancer. We explored the impact of new research activities, therapies, and hospital management. We are very grateful to everyone who has contributed to our work.

Day, S., Viney, W., Bruton, J., Ward, H.

New Genetics & Society, 2021

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Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013–14) and, prompted by these earlier findings, an interview study in HIV services (2014–15). We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach.

Keywords:

Experimental, care, medicine, breast cancer, HIV

Sophie Day, William Viney, Jane Bruton & Helen Ward.Past-futures in experimental care: breast cancer and HIV medicine.’ New Genetics and Society, 40:4, 449-472

Phan, T., Wark, S.

Culture Machine, 2021

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Between 2016 and 2020, Facebook allowed advertisers in the United States to target their advertisements using three broad “ethnic affinity” categories: “African American,” “U.S.-Hispanic,” and “Asian American.” This paper uses the life and death of these “ethnic affinity” categories to argue that they exemplify a novel mode of racialisation made possible by machine learning techniques. These categories worked by analysing users’ preferences and behaviour: they were supposed to capture an “affinity” for a broad demographic group, rather than registering membership of that group. That is, they were supposed to allow advertisers to “personalise” content for users depending on behaviourally determined affinities. We argue that, in effect, Facebook’s ethnic affinity categories were supposed to operationalise a “post-racial” mode of categorising users. But the paradox of personalisation is that in order to apprehend users as individuals, platforms must first assemble them into groups based on their likenesses with other individuals. This article uses an analysis of these categories to argue that even in the absence of data on a user’s race—even after the demise of the categories themselves—users can still be subject to techniques of inclusion or exclusion for discriminatory ends. The inductive machine learning techniques that platforms like Facebook employ to classify users generate “proxies,” like racialised preferences or language use, as racialising substitutes. This article concludes by arguing that Facebook’s ethnic affinity categories in fact typify novel modes of racialisation today.

Keywords:

Racialisation, Facebook, Ethnic Affinities, Proxies, Post-Race

Than, P., and Wark, S. ‘What Personalisation Can Do For You! Or, How to Do Discrimination Without Race.’ Culture Machine 20. 2021.

Redd, R. , Cooper, E., Atchison, C. , Pereira, I., Hollings, P., Cooper, T., et al.

Wellcome Open Research, 2021

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Background:  This study assesses the behavioural responses to SARS-CoV-2 antibody test results as part of the REal-time Assessment of Community Transmission-2 (REACT-2) research programme, a large community-based surveillance study of antibody prevalence in England.
Methods: A follow-up survey was conducted six weeks after the SARS-CoV-2 antibody test. The follow-up survey included 4500 people with a positive result and 4039 with a negative result. Reported changes in behaviour were assessed using difference-in-differences models. A nested interview study was conducted with 40 people to explore how they thought through their behavioural decisions.
Results: While respondents reduced their protective behaviours over the six weeks, we did not find evidence that positive test results changed participant behaviour trajectories in relation to the number of contacts the respondents had, for leaving the house to go to work, or for leaving the house to socialise in a personal place. The qualitative findings supported these results. Most people did not think that they had changed their behaviours because of their test results, however they did allude to some changes in their attitudes and perceptions around risk, susceptibility, and potential severity of symptoms.
Conclusions: We found limited evidence that knowing your antibody status leads to behaviour change in the context of a research study. While this finding should not be generalised to widespread self-testing in other contexts, it is reassuring given the importance of large prevalence studies, and the practicalities of doing these at scale using self-testing with lateral flow immunoassay (LFIA).Keywords:

SARS-CoV-2, COVID-19, lateral flow immunoassay, behavioural change

Redd R, Cooper E, Atchison C et al. Behavioural responses to SARS-CoV-2 antibody testing in England: REACT-2 study [version 2; peer review: 1 not approved]. Wellcome Open Res 2021, 6:203. doi.org/10.12688/wellcomeopenres.16662.1

Thao Phan, Scott Wark,

Big Data & Society, 2021

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This commentary uses Paul Gilroy’s controversial claim that new technoscientific processes are instituting an ‘end to race’ as a provocation to discuss the epistemological transformation of race in algorithmic culture. We situate Gilroy’s provocation within the context of an abolitionist agenda against racial-thinking, underscoring the relationship between his post-race polemic and a post-visual discourse. We then discuss the challenges of studying race within regimes of computation, which rely on structures that are, for the most part, opaque; in particular, modes of classification that operate through proxies and abstractions and that figure racialized bodies not as single, coherent subjects, but as shifting clusters of data. We argue that in this new regime, race emerges as an epiphenomenon of processes of classifying and sorting – what we call ‘racial formations as data formations’. This discussion is significant because it raises new theoretical, methodological and political questions for scholars of media and critical algorithmic studies. It asks: how are we supposed to think, to identify and to confront race and racialisation when they vanish into algorithmic systems that are beyond our perception? What becomes of racial formations in post-visual regimes?

Keywords:

Racial formations, data formations, algorithmic culture, Paul Gilroy, post-race, post-visual

Phan, T., & Wark, S. ‘Racial formations as data formations.’ Big Data & Society. 2021. https://doi.org/10.1177/20539517211046377

Johnstone, F., Imber, K.

Anti-Portraiture: Challenging the Limits of the Portrait., 2020

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Anti-Portraiture: Challenging the Limits of the Portrait is the first collection of essays to explore portraits that contest and transcend the established conventions of their genre. In the disciplines of art history and visual culture the portrait is typically understood as an artistic representation of a unique human subject: scholarly emphasis is placed on the significance of visual and psychological likeness, or on the expression of personal, familial or social identity. Significantly, the very notion of the ‘human subject’ has been actively shaped by historical portrait practices, with the traditional portrait strongly associated with the self-determining, privileged individual of Western modernity. While recent scholarship in the humanities and social sciences has responded to the complexities of contemporary subjectivity with new conceptual models, theorizations of the portrait have largely failed to keep pace.

Examining works in a range of media including sculpture, photography, installation, and sound art, this collection of essays makes the case for an expanded definition of portraiture, and presents fresh paradigms for thinking about subjectivity, embodiment and representation. Offering a timely reappraisal of the terms through which portraiture is conventionally approached, Anti-Portraitureaims to shape future academic debate and influence curatorial practices and institutional acquisition policies.

Johnstone, F. and Imber, K. Eds. Anti-Portraiture: Challenging the Limits of the Portrait. London: Bloomsbury, 2020. ISBN: 9781784534127. 

Luna Puerta, L., Kendall, W., Davies, B., Day, S., Ward, H.

2020

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Background: Biobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re-conceptualize the impact of public involvement in biobanks.

Methods: A systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted.

Results and discussion: Forty-one studies covering thirty-one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners.

Conclusions: Functional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long-standing disagreement about the values of public involvement. This study urges a re-imagination of impact, re-conceptualized as a two-way learning process. More support will help researchers and members of the public to undergo such reflective exercises.

Keywords:

Biobank; impact; public involvement.

Luna Puerta L, Kendall W, Davies B, Day S, Ward H. The reported impact of public involvement in biobanks: A scoping review. Health Expect. 2020 Aug;23(4):759-788. doi: 10.1111/hex.13067. Epub 2020 May 6. PMID: 32378306; PMCID: PMC7495079.

Lury, C., Day, S.

Theory, Culture and Society, 2019

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Recognising that many of the modern categories with which we think about people and their activities were put in place through the use of numbers, we ask how numbering practices compose contemporary sociality. Focusing on particular forms of algorithmic personalisation, we describe a pathway of a-typical individuation in which repeated and recursive tracking is used to create partial orders in which individuals are always more and less than one. Algorithmic personalisation describes a mode of numbering that involves forms of de- and re- aggregating, in which a variety of contexts are continually included and excluded. This pathway of a-typical individuation is important, we suggest, to a variety of domains and, more broadly, to an understanding of contemporary economies of sharing where the politics of collectivities, ownership and use are being reconfigured as a default social.

Keywords:

Algorithm, individuation, numbering, optimization, pathway, personalization

Lury C, Day S. ‘Algorithmic Personalization as a Mode of Individuation’. Theory, Culture & Society 36, 2 (2019):17-37. doi:10.1177/0263276418818888

Day, S., Lury, C.

Theory, Culture & Society, 2017

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This article explores two examples of non-visibility as a way of describing the specificity of contemporary surfaces of visualization. The two cases are the disappearance of Malaysia Airlines Flight 370, the scheduled passenger flight from Kuala Lumpur to Beijing, which lost contact with air traffic control on 8 March 2014 at 01:20 MYT, and the 276 Nigerian girls who went ‘missing’ at about the same time. The analysis is developed through an exploration of these examples in terms of the patterning of vision produced in recursive relations, or relations of feedback with the environment. We argue that changes in the organization of this feedback, which we describe as ‘rendition’, equip contemporary observers with both the capacity to see ‘close up at a distance’ and the capacity to be situated adjacent, next to or ‘beside from above’.

Keywords

Double bind, double blind, rendition, surfaces, vision

Day, S. and Lury, C. ‘New Technologies of the Observer: #BringBack, Visualization and Disappearance.’ Theory, Culture & Society, 34, 7–8 (2017): 51–74. doi: 10.1177/0263276417736586.

Day, S., Coombes, R. C., McGrath-Lone, L., Schoenborn, C., Ward, H.

Sociology of Health and Illness, 2016

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We conducted ethnographic research in collaboration with a large research-intensive London breast cancer service in 2013-14 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal.

Keywords:

UK, personalised medicine, breast cancer, ethnography, stratification, healthcare markets

Day, Sophie E.; Coombes, R. Charles; McGrath-Lone, Louise; Schoenborn, Claudia and Ward, Helen. ‘Stratified, precision or personalised medicine? Cancer services in the “real world” of a London hospital.’ Sociology of Health and Illness 38,8 (2016): https://doi.org/10.1111/1467-9566.12457

Day, S., Lury, C.

Quantified: Biosensing Technologies in Everyday Life, 2016

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This chapter argues that tracking involves an increasingly significant and diverse set of techniques in relation to the ongoing transformation of relations between observer and observed, and between observers. These developments include not only the proliferation of individual sensing devices associated with a growing variety of platforms, but also the emergence of new data infrastructures that pool, scale, and link data in ways that promote their repurposing. By means of examples ranging from genes and currencies to social media and the disappearance of an airplane, it is suggested that practices of tracking are creating new public-private distinctions in the dynamic problem space resulting from the analytics that pattern these data. These new distinctions are linked to changing forms of personhood and changing relations between market and state, economy and society.

Keywords:

Composition, observation theory, biosensing, tracking, feedback loops, public-private

Day, Sophie E. and Lury, Celia ‘Biosensing: Tracking Persons’. In Quantified: Biosensing Technologies in Everyday Life, edited by Dawn Nafus, 43-66. Cambridge MA: MIT Press. DOI:10.7551/mitpress/9780262034173.003.0003

Day, S, Gleason, K, Lury, C, Sherlock, D, Viney, W, Ward, H

BMJ: Medical Humanities, Forthcoming 2022

We explored working and living with cancer at a large research-intensive National Health Service (NHS) hospital breast cancer service and adjoining non-governmental organisation (NGO). The project had three elements that were largely autonomous in practice but conceptually integrated through a focus on personalised cancer medicine. Di Sherlock held conversations with staff and patients from which she produced a collection of poems, Written Portraits. At the same time, we conducted interviews and observation in the hospital, and hosted a public series of science cafés in the NGO.

The trajectory of this project was not pre-determined, but we found that the poetry residency provided a context for viewing participation in experimental cancer care and vice versa. Taking themes from the poetry practice, we show how they revealed categories of relevance to participants and illuminated others that circulated in the hospital and NGO. Reciprocally, turning to findings from long-term ethnographic research with patients, we show that their observations were not only representations but also tools for navigating life in waiting with cancer. The categories that we discovered and assembled about living and working with cancer do not readily combine into an encompassing picture, we argue, but instead provide alternating perspectives.

Through analysis of different forms of research participation, we hope to contribute to an understanding of how categories are made, recognised, and inhabited through situated comparisons. In personalised medicine, category-making is enabled if not dependent on increasingly intensive computation and so the practices seem far removed from mundane processes of interaction. Yet, we emphasise connections with everyday practices, in which people categorise themselves and others routinely according to what they like and resemble.

Keywords:

Cancer care; Medical humanities; social anthropology; poetry.

Day, S., Gleason, K., Lury, C., Sherlock, D., Viney, W., Ward., H. ”In the Picture’: Living and Working With Cancer’. BMJ: Medical Humanities. Forthcoming 2022.