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
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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
Open Access (free)
Dalia Abdelhady, Nina Gren, and Martin Joormann

In this introduction, the authors explain the context of the case studies, which is identified as a process of re-bordering within Europe that is maintained by a strengthening of bureaucracies and institutional structures. At the same time, welfare bureaucracies construct the refugee as a source of risk that needs to be governed, disciplined and mitigated on a daily basis. This process, the authors argue, is fraught with violent practices that are to be studied throughout the book.

in Refugees and the violence of welfare bureaucracies in Northern Europe
Contesting the meaning of the 2015 refugee crisis in Sweden
Admir Skodo

The chapter focuses on Sweden and illustrates the construction of refugees as a national risk, which ultimately impeded the ability to respond to the influx of large number of refugees in 2015. The analysis reveals a fundamental difference between the national and local government. The national government saw 2015 as a threat to sovereignty, while the municipalities saw it as a strain on the bureaucracy that was successfully managed, but the lessons and resources of which were lost on the government and the state precisely at the moment when new practices were established that could effectively deal with another mass entry. The national government curtailed the autonomy of the local government, however. The author concludes that, far from threatening Swedish state sovereignty, the ‘refugee crisis’ has both justified, asserted, and extended sovereignty by recourse to national and international law, and an associative chain link between asylum seekers, illegal immigration, terrorism, and crisis.

in Refugees and the violence of welfare bureaucracies in Northern Europe
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Young Palestinian men encountering a Swedish introductory programme for refugees
Nina Gren

The chapter interrogates the Swedish introductory programme that is expected to aid in integrating refugees. The analysis illustrates experiences of frustration, loss and dependence, which often thwart the hopes and dreams of mobile youth who arrive in Sweden. Despite policy-makers’ attempts to individualise the programme and to offer extensive support, institutional requirements and the disciplining of refugees have immobilising effects, not least when it comes to social mobility and higher education.

in Refugees and the violence of welfare bureaucracies in Northern Europe
Institutions and the challenges of refugee governance
Dalia Abdelhady

The chapter focuses on media constructions of a refugee crisis in 2015 and underscores the central theme of challenging the various institutions of the welfare state. According to the analysis of newspaper articles, state institutions were unable to cope with the demands of bureaucratically managing and assisting those who came to Sweden seeking help. The author underscores the salience of the institutional crisis rather than moral panic that shaped the public framing of the crisis in 2015. Such institutional emphasis facilitates a restrictive turn in reception polices that can be justified through the invocation of notions of order, discipline, control and management without challenging the nation’s self-image as generous and self-righteous.

in Refugees and the violence of welfare bureaucracies in Northern Europe