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.
Urgent and emergency care (by which we mean a procedure which needs to be done immediately) is, by its very nature, different from planned care. The diagnosis is not always easy to nail down: the patient might be in considerable pain, distress or shock, and the trajectory of care can be uncertain. Cancer care raises issues (and a set of policies) of its own. One of the most high-profile targets in the NHS, introduced in 2000, is the four-hour waiting time target for patients to be seen, treated, transferred or
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.
Companies are producing suites of tests for different cancers
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
Synchronicity in Historical Research and Archiving Humanitarian
Mickaël le Paih
strategic awareness of the historical significance of recent
developments in humanitarian medicine. Fabrice Weissman and Mickaël le Paih, who
now work on hepatitis C and cancer programmes respectively, are thus well placed to
reflect on the use of history in contemporary humanitarian work.
Arguably some lessons arising from our experiences are specific to a medical NGO which
has the peculiarity of having no institutional donors requiring reporting and
documenting and which, nevertheless, has had a
Writing about Personal Experiences of Humanitarianism
that I first picked up my pen at the suggestion of a coach that I write to my younger, boyish self as an experienced ‘adult’ with the wisdom of a longer life journey in humanitarian aid. So it was a deeply personal endeavour that carried on for years as an on–off hobby. Then my mother passed away in April 2018 after a long battle with cancer, and I took six months off to grieve. It was during this time that I determined to finish writing the story, and that resulted in almost a quarter of a million words spilling forth. I was simply aiming to capture on paper any
Cancer, modernity, and decline in fin-de-siècle Britain
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’.
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
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
Gene-expression profiling in early-stage breast cancer
Choon Key Chekar
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
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