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.
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 personalisedmedicine 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
Gene-expression profiling in early-stage breast cancer
Choon Key Chekar
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 personalisedmedicine, generating a sense of shared commitment to its realisation (Jerolmack and Tavory 2014 ). Reducing suffering
Personalisedmedicine 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 personalisedmedicine 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
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 personalisedmedicine ‘mobilizes everything and everyone’, aiming for certainty but working in a context of the ‘ever changing nature of truth’ ( 2009 : 256, 246
personalisedmedicine 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
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 personalisedmedicine, 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.
First, we look at how the feasibility study was part of
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, personalisedmedicine is experienced via a new generation of larger-scale, multi-sited adaptive clinical trials. It is to this platform that we now turn
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, personalisedmedicines 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
the same and doing away with any middle organism. 3-D bioprinting of organs takes personalisedmedicine to the next level, offering the possibility of printing an individual’s organs sourced from their own cells, on demand, hence avoiding contagion from other humans or non-human animals entirely. Specialised printers use biological inks (bio-inks such as differentiated-, human embryonic-, or induced pluripotent stem cells) to print layers of living materials one slice at a time, placing them on top of each other. 3-D bioprinting works with organic materials such as