Personalised cancer medicine is developing unevenly across a range of tests, treatments and research initiatives. Traversing local and personal quests for care, together with global networks of services, research and innovation, molecular information and tailored treatments involve a complex array of opportunities and expectations, where access and success are stratified along multiple lines. Patienthood, value, big and little futures all multiply through these arrangements, but coalesce into specific, more common or acceptable repertoires of empowered, hopeful patients, prospective economic growth and valued national assets. The future of informed, optimistic, reassured patients, living longer with or beyond cancer by virtue of molecular monitoring and tailored treatments, is aligned with a vision for UK wealth and prosperity, and a health service leveraging assets to work for the benefit of all of its citizenry.

But alongside these optimistic, promissory scenarios, there are numerous stories of disappointment, disengagement and deflection where patients and their relatives do not experience molecular information as empowerment, or cannot access molecular monitoring, tailored treatments or trials offering experimental therapies. Practitioners, too, are engaged in a series of compromises and a complex choreography of care to tailor treatments and tests as best they can, while supporting research efforts now and for the future, in conditions of limited time and resources. Ambiguity surrounds the blurred boundaries between research and care, with each transition between caring for a patient in the present and thinking about patients in the future requiring moral reflection as well as organisation and logistics.

Through these activities, the future comes into the present, as Adam and Groves comment: ‘the future is not simply beyond the present but is a latent and “living future” within it’ (2011: 17). This makes the work of crafting futures a matter of living and working well, or as well as possible, in the here and now, while also thinking beyond this immediate horizon to future selves or others. The extent to which care for oneself and/or others in the present or future can be tolerated varies across time and across different kinds of settings and patients, with those with the lowest reserves of cultural and economic capital having much less time or capacity to care with or about genomics, given how little they themselves are cared for by society at large.

Our study of personalised cancer medicine exploring these different dimensions of genomic-driven research and care was designed to inquire about the work and value of these activities – who does what, who benefits, why? Within this we have sought to pay particular attention to how care and futurity operate, as forms of work and anticipation merge to produce cancer patienthood anew in the genomic era. We have documented an array of activities, discourses and expectations across our case studies, the sheer variety and complexity of which are difficult to summarise. Our impetus for summary is further blunted by our sense of discomfort about mining our data for academic capital in the form of new theories or concepts, given our questioning of these activities when it comes to molecular as opposed to social data. At the same time we owe it to our readership to return to our initial questions and reflect on how future-crafting operates, the kinds of work and value involved, and how we might rethink and revalue care and other work, value and futures, given what we have discovered. We organise these reflections into three main sections in this final chapter, exploring the work of future-crafting, its collective impetus and implications for identity and solidarities, and how value is produced and reconfigured in the process, before moving on to our final thoughts on revaluing research and care in personalised cancer medicine.

Crafting futures as care work in personalised cancer medicine

To care is to anticipate and tend to an uncertain future, to enable and enliven an ongoing identity and maintain a place in the world. Care features prominently in feminist analyses of technoscience and biomedicine, drawing our conceptual and empirical attention to its constitutive and political dimensions (Puig de la Bellacasa 2012). As Adam and Groves have written:

Caring, like crafting, involves working with numerous materials, patterns, technologies, colleagues, friends, family. It can be relentless, at times rewarding, and at other times difficult and unpleasant; it can cause tensions and build rapport, involve misunderstandings, fractures and disputes, as well as new alliances, a sense of purpose and solidarity. Sometimes caring comes with a script, an acceptable way of operating; at other times it is a process of trial and error, working out, salvaging, seeking help and being open to doing things differently. Our work finds both well-established practices of care, of making do, alongside new forms, for example through social media and through the research/care interface. But care is often under-recognised and undervalued as work, left to undervalued actors or in between other activities, privatised and typically the preserve of women and lower-status workers or carers.

Our studies of personalised cancer medicine have encountered institutions and organisations at various levels of operation – from the ‘high-level’ government or scientific elite pronouncements of the genomics vanguard (Hilgartner 2017), policymakers such as NICE or Genomics England Ethics Advisory Group, to project leaders, principal investigators, patient advocates, through to practitioners operating in laboratories and clinics to deliver genomic medicine, and, of course, to patients themselves and their families. Across these dimensions we have seen a plethora of activities designed to institutionalise or embed genomic medicine in practice, through protocols, research initiatives, training and education. Each, in their own way, are forms of articulation work that invoke or deliver versions of care for particular kinds of institutions, individuals and materials. At one end of the spectrum, considerable emphasis has been placed on standardising and optimising partnerships across nations, institutions and public/private sectors, because of the prospects this offers for delivering better, more precise kinds of healthcare and economic prosperity, enacting care on a macro scale. This is complex and sometimes fraught work. But at a more local scale, caring is especially messy, involving everything from taking care in encounters with patients and colleagues to tending to the logistics of sample preparation, delivery and analysis, consent mechanisms, clinician behaviours, patient pathways and results interpretation.

Organisations and their actors are expected to innovate and be open to innovation through these various activities, which inculcate a ‘can do’ attitude premised on caring enough to be open to learning and change, crafting a more certain future, as well as inviting a range of articulation work to make processes flow and put patients at ease. Yet much of this work remains hidden and unrecognised, despite its vital contribution to the institutional transformations required to make genomic medicine work in practice. It takes place in the margins, between quantifiable activities such as numbers of patients diagnosed, recruited, surviving, and is often delivered by staff working in conditions of precarity – on short-term contracts or projects, in laboratories and clinics that are being reorganised, and in services facing staffing shortages. It happens in corridor conversations, phone calls out of hours, hastily arranged meetings and cobbled together solutions to problems as they arise. These neglected forms of care work for tissue, colleagues, institutions and, of course, patients are an enduring feature of the work of personalising cancer medicine, yet they remain largely hidden from view in official accounts of precision healthcare and research agendas.

Strongly aligned with these activities are the intricate practices of managing the emotions provoked and sustained by personalised cancer medicine, an activity in which patients and carers, together with practitioners, are deeply engaged. Cancer diagnosis, prognosis and treatment invokes a cacophony of emotions of fear, grief, loss, hope, stubbornness and stoicism, and personalised cancer medicine intensifies this rollercoaster ride across the rise and fall of emotions at key points of transition and opportunity. Caring for patients along this journey is difficult and ongoing work for carers and practitioners; it also involves work for patients who need to be seen to care enough about themselves and to continue to care for others around them, including imagined future patients, by not being too negative, ungrateful or demanding. Being careful about hoping too much also requires work from all of these parties, and this can be a source of tension about the benefits of personalised care, not just in the sense that hopes can be dashed, but when disappointments are avoided or discounted and care is experienced as absence or neglect. Working in these ways does not always deliver the kinds of outcomes or experiences patients or practitioners value or expect.

Experimentation is another key feature of the work of personalising cancer medicine. This, too, involves considerable care work for multiple actors. Even when tests or treatments are relatively well established, their uptake in practice is highly contingent on personal circumstances and expectations; their very novelty can be a source of reassurance and comfort for some, but, at other times, a generator of further doubts and anxiety. When tests and treatments are experienced as part of research, or sourced through private means or charitable giving, the idea of being on trial or on the cutting edge can give a sense of being cared for enough that one's future is worth investment, offering hope that is sustaining. But experimenting, by its very nature, is marked by frustrations, tinkering and uncertainties, and this demands particular kinds of care work to manage side-effects, maintain eligibility, source alternatives and cultivate a sense of control of uncertain futures. Here the work of being on experimental therapies involves care as a kind of risk taking, which inevitably means creating burdens for others who must bear witness or manage risks as a result of their obligations to patients or kin. Personalised cancer medicine intensifies this work by embedding research as part of care via the kinds of studies we have followed – adaptive trials, WGS and even smaller feasibility studies taking place locally. Tailoring that care to the particularities of individuals’ DNA and that of their tumours demands work on the part of those individuals to maintain their sense of uniqueness and potentiality to remain on treatments and stay alive, and to support those who are ineligible for genomic and for other reasons.

This uncovers a particular kind of trouble with personalised cancer medicine that is inscribed into the heart of the endeavour. Knowing about cancer and its, and thereby your own, future in ever greater detail intensifies the care work of practitioners and patients, as well as their families. But knowing is not always welcome or reassuring; it is seldom certain knowledge, it can make patients, practitioners and relatives feel hopeless and despairing, and it can undercut the moral and cultural obligation to be empowered through knowledge. Not being able to access a hoped-for treatment, or being told that one's risk is actually rather higher than had previously been thought, being too ill or otherwise ineligible to join a trial, waiting a long time for results or treatments that turn out to be unremarkable, or not ever finding out about that personalised genomic profile because results or samples ‘failed’ is not empowering, and requires an additional layer of repair work to keep going in the face of disappointments and setbacks. Improving genomic literacy is unlikely to be the empowering solution to these experiences, given their depth and complexity.

Attention and resistance to these intense logics of empowerment, progress and the promise of precision are, however, difficult to sustain. For the genomic vanguard, when practitioners adapt, query, ignore or forget as a means of mediating or moderating the drive for molecular personalisation in favour of more holistic notions of personalised care, such resistance can be a reason to accelerate transformation, education or reorganisation of their services. When patients are uncompliant or disengaged, their resistance can be dismissed, managed or explained away by relatives and care givers seeking more optimistic territory. Other patients sublimate their concerns and critiques to keep care givers onside, given that they do not want to alienate and risk restrictions on future care. Relatives, too, can end up silencing their disappointments and fears in favour of being supportive, optimistic, caring. Non-participation can be difficult to achieve or sustain in these circumstances.

This proliferation of care work underpins the design and delivery of personalised cancer medicine and its repercussions for patients, carers and practitioners beyond individual encounters with molecular information or tailored treatments. Care work is oriented around crafting and balancing liveable presents and possible futures, even when options are narrowing or eclipsed as results and treatments do not always bring relief or hope. Care work is also profoundly relational – a collective activity. As personalised cancer medicine develops, these collectives and identities are rearranging, as we now go on to discuss in more detail.

Crafting futures together

Our initial approach to answering the question of how personalised medicine for cancer is transforming what it means to be a patient was to foreground the experiences and accounts of patients, focusing on their identity stories, alliances, commitments, engagements and expectations. This was driven by a sense that much of the STS work in this area is focused on professional practice and activities. But as we interviewed and observed patient experiences, the role of practitioners and relatives in shaping and enacting these practices and accounts came to the fore too, and our focus necessarily shifted beyond patients to this wider nexus of care. This was not just because interviewing patients and speaking about genomics with them was difficult due to their vulnerabilities and other more pressing priorities (although this was often the case), nor was it a matter of prioritising more expert or authoritative voices in the face of confusion or resistance from patients. Instead, our more expansive focus came about because of the repeated experience of patients, relatives and practitioners crafting futures together, as a loosely collective and relational, rather than an individual, enterprise. We observed this across our research: in interviews where relatives attended and contributed alongside the patients who were participating, configuring the interview as a source of reassurance and an opportunity to reflect together on how things were going; in observations in clinics where practitioners, patients and relatives mulled over results, their implications or expectations and settled on a course of action together; in corridor conversations and other backstage arenas such as laboratories or team meetings where, although patients were not physically present, practitioners were actively keeping them in mind when deciding what to do next; on fundraising and other websites where patients’ stories were narrated by and in relation to family, friends and wider publics. So we expanded our approach, focused on professionals as well as patients, and included the activities and accounts of relatives in our study, to better capture these dynamics of collective future-making.

Genomic medicine is complex, and practitioners often worried about patients’, and sometimes their own, ability to grasp its meanings and implications for patients now and in the future. This did not, however, result in a ‘top-down’ paternalistic approach where consultants managed results and decided on treatment, but typically involved dialogue and sense making between a range of practitioners, patients and relatives as they tried to develop a shared understanding of priorities, expectations and opportunities. Even when patients were less engaged, more stoic and trusting, less interested in ‘the numbers’ or their subtype, personalising cancer medicine demanded that patients, relatives and practitioners collectively enacted therapeutic and diagnostic approaches tailored to patients’ needs. For more active, involved, information-seeking patients, who are often younger, more educated and affluent, these collective activities might be more frequent and intense. Yet even for the most entrepreneurial patient, their experience of genomic medicine was always mediated by engagements with and between practitioners with whom they developed shared understandings and agendas as a means of navigating genomic complexities and opportunities. Of course, these relationships and shared understandings could break down, or involve tension and distrust which varies across time and place, but even when under strain the collective process of sense making remains. We emphasise this point to counter one of the most dominant registers of personalised cancer medicine: that of the empowered, individualised patient, making choices, sourcing opportunities, tailoring treatments, and of the power of genomic information in those processes. The patients we found in our research were doing all of these things, but never alone, always in collaboration, and in a way that was intimately shaped by their networks, relationships and encounters with professionals, family and friends all acting as care givers. Genomics was just one part of this wider story.

Reciprocity was a key dimension of these relationships: it occurred when patients and relatives obtained personalised care in real time or for the future; when they enacted gratitude for that care by participating in other kinds of research, charitable giving or campaigning on behalf of other patients; and when they sought to be likeable and accommodating in everyday encounters in clinics and beyond. Patients and relatives used interviews, clinic appointments, consent meetings and a range of participatory and representational activities as occasions to enact reciprocity, to tell their stories of more or less personalised care and its deficiencies within an overall narrative of deep gratitude and commitment to the NHS and its staff, and a desire to help future patients. Even private patients accessing personalised care that is not available on the NHS expressed their sense of gratitude towards it and their discomfort with not accessing care on the NHS; they worked to offset this through other kinds of campaigning activities. Alongside efforts to achieve or demonstrate reciprocity we also identified multiple instances of its absence, as patients, practitioners and relatives experienced ruptures or discomfort in relationships and shared understandings and agendas. Personalised cancer medicine, like other kinds of care, is not always attuned to people's feelings and needs, it is not always available as it should be, and it can be an additional burden or interruption to care which stretched reciprocity to breaking point, generating silence, disappointment and distress.

The collective experience and delivery of personalised cancer medicine has also seen the intensification of particular kinds of biosocial solidarities associated with entrepreneurship and novel kinds of expertise among patients and their supporters. Biosociality is typically associated with rare disease patient groups, working in close alliance with researchers, and, in the case of cancer in the genomic era, we might expect patients and their supporters to be formed into groupings around particular subtypes of cancer, perhaps even across cancers, where a shared mutation traverses these. Yet our research does not suggest that these arrangements are developing at pace; instead, we have identified numerous examples of patients forming tentative alliances around particular efforts to access tailored drugs, trials or tests, often based around the type and stage of their cancer, including its molecular profile. Lung cancer patients seeking access to trials of stratified medicine, late-stage breast cancer patients, ovarian cancer patients, and bowel cancer patients seeking drugs such as Avastin – all of these groups were engaging with molecular subtypes and targeted therapies, but not to the exclusion of others with different molecular subtypes. Instead, their alliances were premised on the struggle for more tailored information and options, and involved the navigation of the landscape of trials and approvals, charitable campaigns and NHS/private provision. They were often online, and therefore engagements could be episodic and fleeting, as well as more committed in the longer term, particularly for those supporting such activities, including families and those living ‘beyond cancer’.

Entwined with these biosocial collectives we can also identify new kinds of expertise being developed by particularly entrepreneurial actors, combining public relations, counselling and support, politics, alliance formation and challenges to advocacy, charitable, professional, political, philanthropic, public sector and corporate actors. We are thinking here of the successful artists, authors, campaigners, advocates, fundraisers and spokespersons for personalised cancer medicine seeking better access to molecular tests and targeted treatments, often outside the NHS. These entrepreneurial experts are key actors in the personalised cancer medicine landscape – facilitating networks, multiplying patienthood and crafting new roles for their relatives which hybridise traditional ‘advocacy’ or ‘consumer critic’ roles, working across public and private sector agendas actively to craft futures for individual patients and their collectives.

Recrafting value

As we have endeavoured to show throughout this book, the promise of personalised cancer medicine is an enduring big future vision which can be found across policy and vanguard accounts of genomic medicine. It also finds its way into ordinary discourses in the clinic and elsewhere, holding a kind of totemic power that enables personal and collective futures to overcome cancer. Patients, relatives and professionals were far less interested in personalised medicine as a source of economic gain either for pharmaceutical companies or the life science economies of the nation. Apart from critical interventions around access to treatment (which, in any case, often focus on the failings of the state, not the profiteering of corporations), the economic value generated by personalised medicine tended to be opaque and disconnected from people's vision of its promise and their futures.

As authors such as Jain (2007) and Steinberg (2015) have emphasised, this economic value is inexorably dependent on cancer patients’ capacity to experiment and take risks with their care in the hope of extending their life. In so doing it relies upon a broader moral economy where being a good patient means embracing suffering for the ephemeral goal of cure, as Steinberg notes: ‘The willingness to undergo treatment's “cutting edge” takes on a talismanic power. What it promises to confer is not so much “freedom from cancer”, as it does moral standing, a certain brand of cultural entitlement and recognition as an edifying subject’ (Steinberg 2015: 130). Our case studies are replete with this kind of opaque exchange, as ‘high-level’ promissory discourses of economic benefit to the nation dissolve into affective repertoires and encounters of care loaded with pain, suffering and optimism, as together patients and their carers tried to craft worthy futures. For all their complexity and variety, these stories share a common pattern of emphasis on investable identities, working hard to be well, to be positive, grateful and determined.

Yet patterns – like recipes and other instruction manuals – can be hacked: repurposed, reworked, adapted and refined. This happens in patient encounters with personalised cancer medicine too: scripts could be resisted, other kinds of patienthood enacted and valorised, difficult questions and awkwardness laid bare, and opaque relations partially revealed. Through these practices new kinds of value emerged, among which care in the present took on a special value of its own.

We have discussed some of these reworkings across our case studies and in relation to our interview practices, where we encountered patients and participants refocusing attention on other aspects of their care beyond or instead of genomics, or resisting the burden of genomic literacy. Through these activities, patients and participants realised other kinds of value from their encounters with personalised medicine, gaining comfort and reassurance and bolstering their sense of self-worth in the process. One way in which this happened was by turning away from the future to the past, to tell their stories and reflect on their meanings and implications. This is, of course, common in cancer cultures, as Jain captures below:

Genomics adds an extra dimension to these ways of ‘living in prognosis’, prompting reflection on molecular subtypes, dormancy and mutation for some. But for others, the salience of genomics was overwhelmed by the process of reflection and remembering, where it faded into the background of complex narratives of lifestyle, heredity and environment. By resisting the urge to focus on molecular futures in favour of phenotypic pasts, participants decentred genomics and reworked the emphasis on ever more complexity and detailed information as a source of progress and cure. Personalised medicine reasserted itself as the holistic assessment of need and shared decision making: genomics was evanescent in that context, while nonetheless becoming embedded in our health services.

This disappearing of genomics also happened in other ways across our studies. We found it difficult to identify, follow and appreciate. Studies were sometimes delayed or faced difficulties recruiting; tests or treatments were not widely adopted or available; and it was not always clear that we were looking at genomics when we explored encounters with personalised cancer medicine involving molecular monitoring or associated targeted therapies. Practitioners as well as patients were unclear about this with us. Genomic results also had less purchase and salience than we might have expected, from patients ignoring the numbers, to practitioners nuancing interpretation, to missing or absent results. But genomics also disappeared into the background of professional activities and patient experiences more generally: it was not a core part of many of their jobs or concerns, it could be just another bit of information or test or treatment or research study for some patients, a vanity project, a doomed venture or a niche activity – for someone else, not for me, more hype than reality. Each act of ignoring, criticising or reframing recrafted the value of genomics, decentring it for patients and practitioners, refocusing attention on the meanings and benefits of care more generally.

At the same time, inequities, deficiencies and problems in delivering care were ever-present concerns for practitioners, relatives and patients. Caring requires time and resources and these were sometimes in short supply. So, in practices like reworking and reclaiming care in the consent meeting for research, patients and practitioners were inadvertently highlighting care's absence elsewhere. In squeezing in meetings, telephone discussions, consenting and training, in recrafting, and often minimising, expectations, practitioners and patients were highlighting the limited opportunities to care for the staff and patients on whose participation value-generation for the companies and institutions leading the genomic revolution depends. Patients’, carers’ and colleagues’ expressions of gratitude and respect for each other for going beyond their contractual duties and obligations also highlight the absence of sustained institutional support in the form of time and resources for people at the genomic coalface.

Exaggerated promises of the value of personalised medicine to patients also came under strain in stories of delays, disappointment, ambivalence, irrelevance or failures of results or access across our case studies. This was most acute when it came to crowdfunders and other kinds of private patients seeking treatments beyond the NHS. Here a tension in the promise of genomic medicine was partially revealed – what good are all of these investments that patients and practitioners make in research studies, trials, experimentation with novel tests and personalisation of care if the tailored treatments that are subsequently developed are too expensive for health services and, therefore, for many patients to access them? Alongside formal evaluations of the clinical and economic value of these drugs, we can find a process of recrafting value among patients and some practitioners where the question of the worth of a life is uncomfortably apparent, and the immediate personal value of accessing the drug is such that patients and their supporters will go to considerable lengths to generate the funds required. These patients and their supporters take on emotional and digital work in the process, and experiment with treatments to generate personal value as well as further value for other patients who might access these drugs in the future by turning their experiences into a source of evidence and exemplar. In so doing, they also highlight, in passing, the inequities and exclusions of care and the absence of value for some patients. A notable absence from many of their reflections, however, was critical engagement with the political and economic arrangements through which drugs are developed and funded by and through the state working with the private sector. There was a tendency to blame the state, not the market, a lack of appetite for thinking about how profits are derived from patients and from public institutions funding research. Although a few patients raised this with us, it was notable how little scope there was to explore and question these arrangements.

Conclusion: revaluing research and care

We can draw inspiration from these and other stories of engagement, accommodation, resistance and tension across our research to try to ‘imagine different ways of acting responsibly in creating futures’ (Adam and Groves 2011: 17). In so doing we must resist the allure of standardising what Puig de la Bellacasa aptly calls ‘the messiness of the present’ and try not to dismiss things that do not fit with neat analyses and recommendations (Puig de la Bellacasa 2012: 203). At the same time, it is important to take care not to represent or speak for patients as a whole, and in so doing silence their differences and divisions, and to recognise that we must ‘work for change from where we are’ alongside our participants (Puig de la Bellacasa 2012: 210). In this concluding section we reflect on three opportunities for revaluing research and care in personalised cancer medicine.

At one level, our case studies of personalised cancer medicine are versions of the same story, which is that research can no longer be considered separate from cancer care; instead, it is intrinsic to the delivery and expectations of (health) care now and in the future. Cancer patients are experimental patients in the genomic era by default: even those outside of mainstream NHS services are experimenting with new treatments whether they are on trials or not. If we think of all genomic research in cancer as a form of care, and vice versa, then we need to reimagine what we are doing when we invite participation or consent or education and training for some patients but not others. We need to rethink the burden of consent and genomic literacy and the opportunities for care that follow from these encounters, following patients’ lead, allowing our ideas about ‘what care is’ to be challenged and reworked in the process. Most importantly, this labour needs to be accounted for in how the benefits and challenges of genomic medicine are portrayed and audited.

Thinking of personalising cancer care as work is a political act; it draws attention to value creation, monetisation and extraction of molecular and clinical data, and invites us to ask what happened to those results and tests and drugs that were developed because of all that research – how are patients benefiting? It also invites us to think about the other workers, the nurses, scientists, doctors, counsellors, advocates, fundraisers and informal carers. How can they be supported to deliver personalised cancer medicine through care as well as research? Revealing the lengths that patients and family members go to to attend clinics, source opportunities, facilitate research, stay well enough to get and stay on a trial, be suitably educated and competent to participate, underlines questions about who benefits and who decides who benefits from personalised cancer medicine. Running counter to the individualising logic of personalisation, this asks us to think about solidarities between and among these different kinds of genomic workers, and how best to realise and share the fruits of their labour.

We can also draw on these stories of the messiness of people's experiences and differences of perspectives as a means to resist the allure of speculative mono-futures of entrepreneurial active patients, alongside many feminists and others within cancer advocacy movements. As Jain has written,

Our exploration of practices of molecular prognosis sharpens our elegiac politics and presses upon us the need to continue to account for and think about all the other kinds of experiences and subjectivities caught up in the politics and economics of personalised cancer medicine, including patients and communities who are silenced, or who actively refute or reject its possibilities and benefits. Being uneasy with this, bearing witness to contradiction, is a necessary condition of collective and individual future-crafting.