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.
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.
friends enact, query and transform promissory visions and agendas for personalised, predictive and preventative cancer medicine through different kinds of participation (and non-participation). We trace how patients and their families engage with personalised genomic medicine for cancer through various kinds of clinical and other encounters and partnerships. We explore co-production and efforts to ‘empower patients, researchers and providers to work together toward development of individualised care’ in the words of the mission statement of the US NIH PrecisionMedicine
So we haven't actually looked at personalised medicine, precisionmedicine, whichever you want to call it, nearly as much as what we'd like to. But, of course, it is going to be an issue. And part of the reason has also been that, in most countries with the highest level of deprivation, not only have they never heard of precisionmedicine or personalised medicine but they've absolutely no chance of having any access to it anyway … one of the problems of precisionmedicine is it's got
benefits, especially those who are too ill or those for whom new therapies remain beyond the horizon, only accessible for future patients, not patients in the here and now. As one patient advocate, Toni, commented about precisionmedicine: ‘It's got everything going for it in terms of making the gap even greater between the richer and the poorer countries because these drugs, by definition, are much more expensive but they have a huge difference in their … potential impact.’ Yet opportunities and capacities to voice this kind of concern or critique are constrained by the
These concerns about a lack of support for and awareness about ovarian cancer meant that Rebecca was particularly invested in social media campaigns such as Everything Teal. She was also optimistic about the prospects of a breakthrough in precisionmedicine research:
I reckon in about the next ten years … hopefully we'll have a breakthrough or … perhaps if we could just … get more funding and get more like what breast has done because breast has had such a significant increase in survival rate … I
partners to enable faster and more personalised patient benefit’.
Presented by the trial website as ‘the largest precisionmedicine trial in non-small cell lung cancer globally’,
Matrix involves a rolling programme of recruitment to treatment arms which can close and open as knowledge about the effectiveness of drugs develops through the research. In press releases about the trial, the principal investigator (PI), Dr Gary
spiralling costs of precisionmedicine have been expressed in a range of quarters. In the journal Nature Biotechnology , Schellekens et al. criticise what they see as an ‘outmoded’ process of drug regulation, but they also state that ‘the main contributor to soaring costs is innovation in a market that is driven by what is offered, rather than by medical need’ (Schellekens et al. 2017 : 507). Cancer charities also become involved in lobbying around pricing strategy. For example, the CRUK website ran a story about pricing, quoting Professor Richard Sullivan, director of
Gene-expression profiling in early-stage breast cancer
Choon Key Chekar
. Patients’ and practitioners’ ambivalence was overlaid with more totemic, anticipatory regimes of personalised medical futures, even in processes which purported to question the value of the test and aimed to capture a broad range and variety of experiences to guide policy formulation. The arbitration of contested and conflicting evidence from trials and patient and clinician testimony resulted in continued valuing of the test within the NHS, thus ensuring both that the commercial imperative and the promise of precisionmedicine continued apace