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- Author: Julia Swallow x
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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.
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.
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 2 explores the promise of prediction and prevention of recurrence in personalised medicine for some kinds of breast cancer through the case of a genomic technique already widely adopted within the NHS across the UK: gene-expression profiling. We consider a genomic test, Oncotype DX, which seeks to identify, among early breast cancer patients, those who would or would not benefit from chemotherapy to prevent future recurrence. The aim here is to limit exposure to chemotherapy, which can be toxic and debilitating. The test was promoted to the health service, practitioners and patients as a means of prediction and prevention, including via practitioners’ and patients’ contributions to processes of regulatory and clinical decision making surrounding the test. Considering how the test was envisaged as a benefit to the NHS and to patients in policy, practitioner and patient accounts of their experiences of decision making regarding chemotherapy, we explore how it fitted in with already complex cancer experiences and hopes for a cancer-free future. We look at how the narrative that the test offers reassurance and prediction came to dominate policy, but also consider situations where prediction and prevention were more contingent and provisional, particularly in the context of clinical encounters.
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 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.
Chapter 5 is about large-scale national studies, recruiting patients with a range of cancers to collect extensive molecular information about cancer and ultimately inform routine patient care via precision medicine. We focus on Genomics England’s 100,000 Genomes Project. After discussing the rise of these mass-participation initiatives and their strong national imaginaries of economic development and cutting-edge healthcare, we explore how practitioners, patients and families made sense of participation, and how this related to their investments in particular institutions and futures. We explore the participatory logic of these initiatives, and the ways in which informed consent processes and genomic literacy agendas were developed and enacted to increase participation. We contrast efforts to improve genomic literacy and informed consent by clearly demarcating personal benefits in terms of improved care from the research dividend to the NHS, but with blurred boundaries in practice. Patients and family members were seeking care through participation and reworking efforts to improve their understanding to establish their worth as a patient and ensure optimal, personalised care into the future. We explore how this was managed by professionals to meet the aims of the programme despite their reservations about its value and implications.
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.
Chapter 7 considers non-participation and exclusions as well as reservation, consternation and rejections around genomic medicine in our research and in the public sphere more generally. We investigate the particular social and cultural contexts in which disengagement and resistance are generated. Exploring negative views and experiences or simply a lack of response to genomic medicine, we consider when these kinds of personalised medicine are ‘not relevant to us’ and why some people just do not have the capacity or resource to engage with them. Rejecting or refusing opportunities to engage with genomic medicine also results from the awareness of competing priorities such as health equality or preventive healthcare as well as a commitment to other forms of care. Not every patient can or wants to craft their own treatment pathways, or looks to the future with a sense of agency and control, and we reflect on what it means to opt out, be excluded or feel left behind by these kinds of research and care. We also discuss the ways in which different agencies and actors strive to tackle disengagement by reaching out to different communities to appeal to their sense of responsibility towards contributing to the prospects of better care for individuals and community now and in the future. We argue that these practices present an important counterpoint to the dominant, inclusive vision of P4 medicine, particularly with regard to personalisation and participation.