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Digital culture and personalised medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

While many cancer patients experience molecular diagnostics and targeted therapies as part of standard treatment or through clinical trials provided free-of-charge through the NHS, others turn to private providers to craft their own care pathways, utilising private health insurance, savings, taking out loans or raising money via crowdfunding online. In Chapter 6, we explore how practitioners, patients and their relatives seek to tailor their care and treatment pathways via these kinds of engagements with private healthcare. We examine ambivalence about access to expensive experimental treatments as part of NHS or private care, and draw associations between optimisation, actionability and adaptability via personalised diagnosis and therapies and patient entrepreneurship, and the intensified responsibilities for health and healthcare therein. Through this exploration we situate personalisation in relation to transformations in citizenship and consumption via social media platforms, and argue that this brings another layer of care, biosociality and identity work for patients and their relatives as they navigate the hope and social obligations of personalised cancer therapies.

in Personalised cancer medicine
Open Access (free)
Exploring personalised cancer medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

In this chapter we introduce the topics, case studies and the main themes of the book, exploring the medical and scientific, political and economic backdrop to personalised cancer medicine as the context for our study. After briefly outlining our methodology, we describe our orientation to the subject, the key questions and academic influences we have drawn upon and introduce each of the chapters to follow.

in Personalised cancer medicine
Prolonging foreshortened futures
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Chapter 3 explores another technique that offers personalised predictions of responses to treatments for cancer based on molecular profiling, this time for later stage gynaecological cancer patients seeking to prolong foreshortened futures in a non-curative context. Gynaecological cancers encompass cancer of the womb, ovaries, cervix, vagina and vulva, and mainly, but not exclusively, affect post-menopausal women. Awareness of these cancers is low compared with other cancers such as breast cancer (in women); diagnosis and treatments and a range of campaigns and research agendas have been developed to address this. We consider a commercial test developed by a company we are calling Virtue, not yet in routine use, that was embedded in a feasibility study in one hospital. We looked at how the feasibility study was part of building a network of collaborations and an evidence base to extend molecular tumour profiling in gynaecological and other cancers. We explore how expectations of precision and actionability were fashioned yet not always realised in practice, and focus in particular on the kinds of work this involved for practitioners and patients.

in Personalised cancer medicine
Adaptive trials for intractable cancers
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

In Chapter 4 we explore another route by which advanced cancer patients are offered the promise of tailored treatments that may prolong their lives, focusing on an adaptive multi-centre trial for lung cancer that aims to optimise treatments through a process of ongoing adaptation. Lung cancer has a lower public profile than some other cancers and it remains highly stigmatised because of its associations with smoking and higher prevalence among disadvantaged socio-economic groups. Concerted efforts are underway to enhance understanding of the disease and to develop new treatments. We show how the promise of the trial and targeted approaches offered a glimmer of hope for patients and practitioners coping with a bleak prognosis. We explore how the trial, treatments and patient and institutional futures were optimised in these very challenging circumstances. We look at how disappointments, failures and anxieties were navigated by patients and practitioners through containing scepticism backstage, calibrating expectations of extended futures, and cultivating expectations that other patients will benefit in the future instead.

in Personalised cancer medicine
Future crafting in the genomic era
Series: Inscriptions

What does it mean to personalise cancer medicine? Personalised cancer medicine explores this question by foregrounding the experiences of patients, carers and practitioners in the UK. Drawing on an ethnographic study of cancer research and care, we trace patients’, carers’ and practitioners’ efforts to access and interpret novel genomic tests, information and treatments as they craft personal and collective futures. Exploring a series of case studies of diagnostic tests, research and experimental therapies, the book charts the different kinds of care and work involved in efforts to personalise cancer medicine and the ways in which benefits and opportunities are unevenly realised and distributed. Investigating these experiences against a backdrop of policy and professional accounts of the ‘big’ future of personalised healthcare, the authors show how hopes invested and care realised via personalised cancer medicine are multifaceted, contingent and, at times, frustrated in the everyday complexities of living and working with cancer. Tracing the difficult and painstaking work involved in making sense of novel data, results and predictions, we show the different futures crafted across policy, practice and personal accounts. This is the only book to investigate in depth how personalised cancer medicine is reshaping the futures of cancer patients, carers and professionals in uneven and partial ways. Applying a feminist lens that focuses on work and care, inclusions and exclusions, we explore the new kinds of expertise, relationships and collectives involved making personalised cancer medicine work in practice and the inconsistent ways their work is recognised and valued in the process.

Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Chapter 1 sets the scene for the case studies in the book, drawing on STS and related literatures to trace the development of molecular understandings of cancer, tests and treatments and their place in the cancer clinic. The chapter covers the evolution of clinical trials and biobank research, including the rise of adaptive, basket and umbrella trials. We also explore the development of new molecular taxonomies of cancer and the implications of this fragmentation for research and treatment. The drive for personalisation is associated with new understandings of cancer as evolutionary and adaptive, and we explore how professionals make sense of this dynamism when developing treatment and understanding its effects, expressing both optimism and caution about their impact and potential. We consider the new technologies and infrastructures that genomic medicine in cancer involves, particularly in relation to tissue, data and eligibility, as well as new professional arrangements, including multidisciplinary team working, national and international consortia and public–private collaborations. We explore expert disputes, for example about the effectiveness and value of new genomic approaches, particularly in relation to the development of flexible or adaptive trials. Throughout we reflect on what these developments mean for making personalised cancer medicine work in practice, key themes in the chapters to follow.

in Personalised cancer medicine
Syrian asylum seekers and bureaucracy in Germany
Wendy Pearlman

Focusing on Syrian refugees in Germany, the chapter illustrates the mismatch between mobility and hopes on the one hand, and frustrations and dependence on the other. The analysis illustrates that entrapment in different bureaucratic regulations and institutional procedures are experienced as hinderances to establishing oneself in the new society.

in Refugees and the violence of welfare bureaucracies in Northern Europe
Open Access (free)
Asylum and immobility in Britain, Denmark and Sweden
Victoria Canning

The chapter turns attention to the ways the externalisation of controls through physical barriers – walls, wires and border policing – is increasingly supplemented with more banal and bureaucratic internal constrictions which work to encourage immigrants to leave. Detention, degradation and destitution have become the modus operandi for facilitating the removal of unwanted migrant bodies in the UK, Denmark and Sweden. Although there are similarities, each country uses strategies differently, particularly since the increase in immigration to Europe since 2015.

in Refugees and the violence of welfare bureaucracies in Northern Europe
A critical study of social media discourses
Marie Sundström and Hedvig Obenius

The chapter scrutinises the meaning of asylum from the perspective of social media users who may not have experienced mobility. The authors analyse the debate surrounding a decision to deport an elderly woman, which was later overturned by one of Sweden’s Migration Courts. The analysis highlights the dichotomy of inclusion/exclusion as a form of discursive violence that is exercised bottom-up, bringing new insight into an important aspect of the dehumanisation of asylum seekers and refugees.

in Refugees and the violence of welfare bureaucracies in Northern Europe
A visual analysis of four frames of representation of ‘refugeeness’ in Swedish newspapers
Jelena Jovičić

The chapter is based on the examination of visual material and associated imageries of refugees. The analysis puts forth four visual frames for understanding the representation of refugees: victimization – refugee bodies constructed as voiceless victims caught in suffering; securitization – refugee bodies enmassed and posing threats to destabilize sovereignty of the ‘nation state’; reception – images of refugees being welcomed and integrated in Sweden; and humanization – private portraits of people fleeing depicted as complex individuals and active political subjects. These frames allow for an understanding of othering as an important aspect of the visual representation of the sense of crisis.

in Refugees and the violence of welfare bureaucracies in Northern Europe