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.

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

Commercially produced genomic tests for cancer diagnosis, prediction and treatment are being incorporated into NHS care, albeit unevenly and with much contingency in practice. A range of genomic tests are under research and development as part of the widening diagnostics market: a recent report estimated that the tumour-profiling market would be worth $12.4 billion by 2024, with genetic biomarkers accounting for the largest share. 1 Companies are producing suites of tests for different cancers

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

In this chapter, we explore how the promise and the work of personalised cancer medicine has evolved as genomic medicine has advanced. We trace some of the forms of value this has generated for patients and practitioners, industry and economies, and set the scene for our wider exploration of how this kind of future-crafting is reshaping the roles and responsibilities of cancer patients and practitioners. Drawing on a range of social scientific literatures and studies on genomic medicine for cancer, together with data from our own case studies

in Personalised cancer medicine
Cancer, modernity, and decline in fin-de-siècle Britain
Agnes Arnold-Forster

In 1899, the Contemporary Review published an article by the English physician Woods Hutchinson (1862–1930) entitled ‘The cancer problem: or, treason in the republic of the body’. 1 In this article, thick with metaphorical allusions and polemic, Hutchinson condensed to thirteen pages the diverse and fraught anxieties that attended cancer in late nineteenth-century Britain. He wrote about how, over the past thirty years, the ‘deaths per thousand living from this malady’ had doubled in England

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

Breast cancer has long been a focus of research and innovation in genomic medicine, from one of the first targeted therapies, Herceptin, as discussed in Chapter 1 , to testing for mutations in breast cancer susceptibility genes such as BRCA1 and BRCA2, which developed through the course of the 2000s. Research into the molecular biology and gene expression of breast cancer tumours has spurred the identification of a range of variants or subtypes of breast cancer according to their molecular make-up. In addition to the development of Herceptin

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

Tensions around the value generated by the complicated nexus of private, public and industry arrangements of large-scale genomic sequencing initiatives can also be found in the wider political economy of targeted therapies. Personalised cancer drugs promise cures and economic growth. But their expense presents a problem for healthcare providers and patients alike. Recent reports suggest that in one of the largest markets, the USA, spending on cancer drugs in the genomic era has increased dramatically – rising from $26 billion in 2012 to more

in Personalised cancer medicine
Open Access (free)
Janet Wolff

, when I had been living in California for about eighteen months, a routine physical examination showed that I had thyroid cancer. Surgery (a thyroidectomy) further Austerity baby Thank-You Britain Fund letter [8] revealed that the cancer was already in one lymph node. There was, and is, no such thing as a routine physical exam in England, and, since I had no symptoms, I could only conclude that it would likely have been too late by the time the cancer was discovered, had I still lived in England. Then I read Marilynne Robinson’s 1989 book, Mother Country, and

in Austerity baby
Open Access (free)
Translating globalised knowledge in performance
Simon Parry

recognition of the others both as an equal, whenever differences make her or him inferior, and as different, whenever equality jeopardizes his or her identity. (2014, 156) 130 Science in performance The artistic forms discussed in this chapter use different social processes that enable recognition of diverse ways of knowing. They also create aesthetic forms that facilitate the co-location of knowledges in ways that resist premature ordering. In each case an object provides a starting point: skin, breast cancer, khat. As I have discussed in the previous chapter, these

in Science in performance