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

We wanted to learn about new ways of diagnosing and treating cancers that are associated with what in the UK is called ‘personalised medicine’. We followed the work of one scientific team who use samples to develop ‘liquid biopsies’, extracting and tracking circulating tumour DNA. We propose this ‘personalised’ monitoring involves the figuration of disease. Using the terms developed by Erich Auerbach (1938; 1946), we suggest that personalised tracking may establish serial, figure-fulfilment relationships, connecting [with connections between] events and persons. We show how the development of liquid biopsies in oncology involves multiple figures in pictorial, numerical, and conceptual forms. Using serial liquid biopsies, patients can be stratified into sub-groups but also into figures of personalisation.

Keywords:

Personalised medicine; Molecular genetics; Liquid biopsy; Breast cancer; Auerbach

Viney, W. and Day, S. ‘Figuring Molecular Relapse in Breast Cancer Medicine.’ In Figure: Concept and Method, edited by Celia Lury, William Viney, and Scott Wark. PalgraveMacmillan, 2022.

Platforms for standardising and sharing data between research and care are in construction, as they have been for some years. Currently, they take the form of creating a large ‘knowledge bank’ linking health records and biological samples with explicit consent for research use. Researchers will be able to work with the data without being able to identify patients, through pseudonymising techniques. This virtual research space is described as a “walled garden”. In this chapter, we ask what/who/when is a person as they are disassembled, transformed, layered and valued; emerging from and disappearing into data that are disaggregated and segregated. Together—an anthropologist, an epidemiologist and a patient who is fortuitously known as the gardener and has participated in many research studies since 2013—we hope to re-aggregate data and reconstruct a fuller history in which the patient is recognisable. This enquiry necessarily raises questions about the different ways in which a person is figured and distributed through personal experience, ethnography and biomedicine.

Keywords
Participation; Biobanking; Breast cancer; Biomedicine; Data

Day, S., Smith., and Ward, H. ‘The Gardener and the Walled Garden’. In In Figure: Concept and Method, edited by Celia Lury, William Viney, and Scott Wark. PalgraveMacmillan, in press.

This chapter discusses three figures of speech: the organization Not Iin Our Name (NION), #JeSuisCharlie and #MeToo and describes the ways in which, as figures of speech, they constitute persons through a consideration of the use of names, pronouns and numbers. Concerns include whether the person so constituted is singular or plural, how participation in the figure of speech is configured, whether the persons are recognized to be ‘proper’, and whether and how the persons can speak the truth. The conclusion brings these concerns together in the proposal that what distinguishes the persons of #JeSuisCharlie and #MeToo is that they are ‘stuck in the middle’ with ‘People Like You’.

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.

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.

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.

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?

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:

Biobank; impact; public involvement.

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.

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

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

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

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

This introduction will outline the concept and practice of “figure” and “figuration.” The word “figure” can refer to numbers, characters in text or representations of persons or other entities in images or to a movement or series of movements, a diagram or a short succession of notes. In uses such as prefiguring, configuring, and disfiguring, it can refer to a process, opening questions of ordering, causality, premonition, (retrospective) fulfilment, prophecy, anticipation, redemption and pre-emption. As a noun, configuration can refer to an assemblage or the ways in which technologies materialise cultural imaginaries. Figures sit between the representational and the abstract; they can be inhabited and, in being inhabited, can be turned. We conclude by inviting readers to “go figure!”

Scholarship on the history of political arithmetic highlights its significance for classical liberalism, a political philosophy in which subjects perceive themselves as autonomous individuals in an abstract system called society. This society and its component individuals became intelligible and governable in a deluge of printed numbers, assisted by the development of statistics, the emergence of a common space of measurement, and the calculation of probabilities.  Our proposal is that the categories, numbers, and norms of this political arithmetic have changed in a ubiquitous culture of personalisation. Today’s political arithmetic, we suggest, produces a different kind of society, what Facebook CEO Mark Zuckerberg calls the ‘default social’. We address this new social as a ‘vague whole’ and propose that it is characterised by a continuous present, the contemporary form of simultaneity or way of being together that Benedict Anderson argued is fundamental to any kind of imagined community. Like the society imagined in the earlier arithmetic, this vague whole is an abstraction that obscures forms of stratification and discrimination.