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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

Throughout this book we have endeavoured to demonstrate the diversity, complexity and contingency of personalised cancer medicine in practice, focusing in particular on its meanings and implications for patients as they craft their individual and collective futures. We have encountered a range of ways in which personalised medicine does not meet the promise articulated in popular totemic versions of its transformative powers. We have also shown how its values and meanings multiply in practice, and the work that is involved in extracting or

in Personalised cancer medicine
Gene-expression profiling in early-stage breast cancer
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

were also framed as deriving personal value from the test, which offered relief and prevented toxic side-effects when they could avoid chemotherapy with more certainty. The NHS was presented as deriving efficiency gains and financial benefits from these outcomes. The value of being ‘future-oriented’, not being backward or overtaken by other countries, was also asserted through these processes. Oncotype DX became totemic of the future of personalised medicine, generating a sense of shared commitment to its realisation (Jerolmack and Tavory 2014 ). Reducing suffering

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

Personalised medicine for cancer is at the forefront of the new bioeconomy and visions for the future of healthcare. It promises treatments tailored to individuals’ genomes and those of their cancers, as well as more precise diagnosis, prognosis and prevention. Widely celebrated as revolutionary and transformational, the risks and ethical conundrums of personalised medicine are confronted every day by patients, clinicians and researchers, but are consistently underplayed in the mainstream media (Marcon et al. 2018 ). Cancer research has a

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

initiative, 1 and trace the kinds of participation involved in ‘participatory medicine’ (Hood and Auffray 2013 ). As Prainsack ( 2017 ) notes, the emphasis is on patients driving these new agendas, inviting them to generate data and push the boundaries of research and care. Drawing on Adams et al.'s discussion of anticipation and futures, it appears that personalised medicine ‘mobilizes everything and everyone’, aiming for certainty but working in a context of the ‘ever changing nature of truth’ ( 2009 : 256, 246

in Personalised cancer medicine
Open Access (free)
Participation to build the bioeconomy
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

personalised medicine agenda of the NHS, which is a top level objective of the NHS. And very few people really quite get what that means. And in reality what it means is that – it's really a big data project, so it looks like a lab based project but it's actually – actually a project about the, the – about leverage of large datasets. And so the end point of the programme really is that genomics data, er, will be merged with all the other data that can be linked through someone's NHS number into a central data repository. And from that, tools will be

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

yet fully embedded in standard NHS care. Exploring how smaller-scale clinical research creates and prepares the way for further public/private partnerships to deliver personalised medicine, we focus on a feasibility study in an NHS hospital for a commercial molecular profiling test developed by a US company that we are calling Virtue. The multi-platform profiling test can guide treatment decisions for locally advanced or metastatic, gynaecological cancers. 3 First, we look at how the feasibility study was part of

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

We have explored molecular profiling for some breast cancer patients for whom targeted treatments have a longer history than for most cancers, but where the introduction of commercial tests is relatively recent in UK contexts. We have also considered gynaecological cancer patients accessing another commercial test as part of a feasibility study. For other cancer patients, personalised medicine is experienced via a new generation of larger-scale, multi-sited adaptive clinical trials. It is to this platform that we now turn

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

experimental ethos perpetuated through major charitable institutions that fund cancer research – institutions that are embedded in the fabrics of our lives via a plethora of fundraising initiatives and charitable giving. This further increases pressure on decision makers. Third, and perhaps most importantly, personalised medicines are most effective for particular subgroups of patients, depending on their genomic profile, and yet evidence of this benefit can be difficult to generate. The way in which the effectiveness of cancer therapies is evaluated tends to rely on a lot

in Personalised cancer medicine
Open Access (free)
Theatre and the politics of engagement
Author: Simon Parry

This book is about science in theatre and performance. It explores how theatre and performance engage with emerging scientific themes from artificial intelligence to genetics and climate change. The book covers a wide range of performance forms from the spectacle of the Paralympics Opening Ceremony to Broadway musicals, from experimental contemporary performance and opera to educational theatre, Somali poetic drama and grime videos. It features work by pioneering companies including Gob Squad, Headlong Theatre and Theatre of Debate as well as offering fresh analysis of global blockbusters such as Wicked and Urinetown. The book offers detailed description and analysis of theatre and performance practices as well as broader commentary on the politics of theatre as public engagement with science. It documents important examples of collaborative practice with extended discussion of the Theatre of Debate process developed by Y Touring theatre company, exploration of bilingual theatre-making in East London and an account of how grime MCs and dermatologists ended up making a film together in Birmingham. The interdisciplinary approach draws on contemporary research in theatre and performance studies in combination with key ideas from science studies. It shows how theatre can offer important perspectives on what the philosopher of science Isabelle Stengers has called ‘cosmopolitics’. The book argues that theatre can flatten knowledge hierarchies and hold together different ways of knowing.