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.
Chapter 5 analyses the mechanisms of adaptation and settling among Polish migrants in the UK. Even though settlement processes remained more noticeable among the Poles than the Ukrainians, they could still be better characterised in terms of anchoring rather than putting down roots. The research demonstrated the centrality of security and stability in the experience of Polish migrants in the UK. The migrants represented agents looking for life opportunities while recovering their sense of stability and security, based mainly on the ethno-cultural networks, family ties and work opportunities. The footholds strengthening Polishness and ethnic bonds included: Polish language and culture; strong national identity; close family; narrow circles of support and the wider Polish community (particularly involvement in the Polish school, church and voluntary work). They were related to gender and family roles as well as homemaking and other daily practices. The main footholds grounding the migrants in British society encompassed: work, English language (e.g. skills, language classes); children’s (English) school and after-school activities, and anchors in neighbourhoods and local communities. In spite of many commonalities in anchoring across the sample, differences were noticeable between family-oriented participants, single (working) self-oriented migrants and institution-oriented migrants (e.g. the homeless or other vulnerable individuals), showing the variety of adaptation and settling patterns.
This final chapter will draw the various threads of the book together and reflect on them in the light of current debates around Research Ethics Committee (REC) review. This chapter will explore how many of the historical challenges raised by REC practice (for example, the geographical variation in approval rates resulting from autonomous, local committees or the review of scientific quality of applications) are still subject to considerable debate on the part of policy makers and how the proposed responses – because they fail to engage with the central role of trust – run the risk of undermining REC decision making. The chapter then sets out three specific insights – around REC membership, the regulation of risk, and street-level bureaucracies – that arise from the book as a whole.
Michael Pierse, Churnjeet Mahn, Sarita Malik, and Ben Rogaly
The conclusion brings together the range of learning across the book in
relation to co-creativity, radical openness and creative interruptions in a
hostile world. It suggests where the project has succeeded in developing
creative interventions that disrupt the political status quo, while also
conceding those areas where its attempts at doing so were scuppered or
constrained by ideologies, orthodoxies and material practices. The chapter
considers Henry Giroux’s concept of the ‘disimagination machine’ of
neoliberalism and how the creative interruptions surveyed create resources
and strategies with which to challenge the mechanisms of disimagination; it
asks how we have used creativity to envisage alternative futures and connect
with radical pasts.
The concluding chapter explores new directions for research and possibilities of using the theory of anchoring. This part of the monograph opens a discussion about policy and practical implications of anchoring. It underlines the particular importance of the first period of migration, with first encounters and exchanges providing significant framing experiences. The book also highlights the importance of cognitive anchors (both adaptive and adverse) which may be changed when reflected upon by individuals willing to learn, especially when adequately supported. Possible further applications are proposed, based on the principles of cognitive and behavioural therapy to assist migrants in adaptation and settling in the sense of establishing themselves in the receiving society and better satisfying their needs of safety and security. The chapter claims that the theoretical and practical significance of the concept of anchoring seems to go beyond migration studies. This approach might be useful for theorising the recovery of individuals’ safety and stability after major changes and crises, as well as analysing the wider problem of settling and adaptation to life in the complex and changeable world, particularly in the case of those who have experienced traumatic life changes and/or remain not grounded or socially connected, such as homeless people.
Photini Vrikki, Sarita Malik, and Aditi Jaganathan
How have ideas of race and belonging helped shape creative work? Chapter 3
explores how different generations of Black and Asian activists in the UK
have mobilised screen media, from film to digital, as a response to the
institutional practices and cultural norms that generate disparate
racialised outcomes. The discussion provides an opportunity to focus on the
motivations of creative activists who use the film form and podcasting to
agitate for anti-racism. The chapter provides an overview of the Black
British context of creative production and exclusion. It foregrounds the
testimonies of archivists, curators, podcasters and filmmakers to explore
the anti-racist interruptions that are made possible by different media
technologies and platforms; the particular interventions that are envisaged
by cultural producers; and the effects that such representations actually
Co-creation, theatre and collaboration for social transformation in
Michael Pierse, Martin Lynch, and Fionntán Hargey
This chapter assesses, from a range of angles, the successes and challenges
faced by practitioners, academics, community workers, activists and
participants in co-creating a theatre project focusing on civil rights
issues in Belfast. The chapter’s three authors, one a playwright and theatre
director, another a community worker and the third an academic – all of whom
worked together on the project – each provide perspectives on the project.
In the third section, we look at data from the project, including audience
surveys and participant interviews, in order to better understand the ways
in which co-creativity happened and where it was limited or failed. The
‘Creatively Connecting Civil Rights’ strand of the wider Creative
Interruptions initiative on which this chapter is based produced a
commercial play, but also a range of smaller outputs, including a radio
play, short film and monologue. The chapter therefore also facilitates some
consideration of different creative contexts and related approaches.
What can culture, and its manifestations in artistic and creative forms, ‘do’?
Creativity and resistance draws on original collaborative research that brings
together a range of stories and perspectives on the role of creativity and
resistance in a hostile environment. In times of racial nationalism across the
world, it seeks to connect, in a grounded way, how creative acts have agitated
for social change. The book suggests that creative actions themselves, and
acting together creatively, can at the same time offer vital sources of
hope. Drawing on a series of case studies, Creativity and resistance focuses
on the past and emergent grassroots arts work that has responded to migration,
racism and social exclusion across several contexts and locations, including
England, Northern Ireland and India. The book makes a timely intervention,
foregrounding the value of creativity for those who are commonly marginalised
from centres of power, including from the mainstream cultural industries.
Bringing together academic research with individual and group experiences, the
authors also consider the possibilities and limitations of collaborative
From a metaphor through a sensitising concept to an empirically grounded concept
Chapter 2 shows how the author’s empirical research on the processes of adaptation and settlement of Polish migrants in Belgium and later Vietnamese and Ukrainian migrants in Poland provided a basis for her critical reflection on the limitations and sometimes insufficiency of the key concepts used in migration studies, especially the concept of integration. It illuminates how the former empirical work and outcomes of previous analyses of the existing theoretical field in migration studies led the author to her search for different ways of conceptualising migrants’ adjustment and settling, and allowed her to sketch her first integrative and transdisciplinary framework incorporating the previously underestimated psychological perspective. This chapter analyses the role of the metaphor of anchor and how the concept had been built upon, and it highlights the significance of a single study of psychological usage of anchors in therapy for cancer patients to overcome identity crises and restore their feeling of continuity and integrity (Little, Jordens and Sayers 2002). The chapter demonstrates that in spite of its theoretical and practical potential, anchoring has not been developed into an analytical concept either in migration studies or in broader social theory, only being mentioned in passing in a metaphorical way by authors such as Bauman (1997) or Castells (1997). The concept of anchoring is thus presented here as an analytical tool which makes use of the strength of its founding metaphor and the promising intuitions which it embraces. The chapter ends by featuring the general characteristics of the concept.