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 personalised medicine 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 articulating this value by and for patients, even if it does not always result in effective treatments or cures. At the same time, we have explored how the value of personalised medicine endeavours, particularly larger-scale research initiatives, is linked to the future of the wider bioeconomy, focused on economic gain generated by providing better services for more patients. Across this landscape of value generation, patient participation is crucial – patients need to provide data, experiment with treatments and enact responsibilities, to be engaged and remain active in maximising their own and others’ health. The development and mainstreaming of molecular diagnostics, monitoring and targeted treatments relies on patients to advocate, campaign, learn, test and tolerate tissue extraction and experimental approaches, for their own and others’ benefit.

Participation is, however, not guaranteed and cannot be taken for granted. Publics and patients do not always participate as the P4 agendas of predictive, personalised, preventative, participatory medicine envisage or promote. Sometimes tests or treatment options are not available despite patients’ or their relatives’ or clinicians’ efforts; at other times patients choose not to participate or are not invited to do so. Participation in research, tests or treatments can also be irrelevant or experienced as unwelcome for some patients, particularly those who have fewer physical, economic and cultural resources or are otherwise alienated from medical and scientific institutions. Practitioners mediate participation too, sometimes being less likely to facilitate participation when they do not see advantages for patients or services more generally. In these contexts, participation can be framed or experienced as a burden rather than an opportunity.

As Michael (2012) discusses, ‘misbehaviours’ among representatives, members of the public or research participants can encompass a range of ways of avoiding or declining participation, not all of which involve actively saying ‘no’. Ignoring, avoiding, prevaricating, querying, challenging, deflecting, reworking and subverting can also be part of avoiding or resisting participation, as can silent refusal. Non-participation can arise from a lack of opportunity, inclination or capacity, as much as an actual refusal. Participation can also be restricted or mediated in practice, purposely or sometimes without planning, for example when someone becomes upset or tired. In other situations, non-participation is more overt, shaped by a politics of what Benjamin calls ‘informed refusal’ by ‘those who attempt to resist technoscientific conscription’ (2016: 967). Developing Rapp's work on ‘moral pioneers’ including ‘refusers and draft resisters’ who actively choose not to partake in tests in response to ‘a highly complex, highly structured social nexus within which they negotiate and exercise personal choice’ (Rapp 1998: 62), Benjamin asks us to consider how these acts of refusal offer a ‘necessary critique of the assumptions and excesses of forms of belonging that rest so heavily on biological claims’ (Benjamin 2016: 967).

This chimes with critical reflection in other STS and medical sociology research on public engagement with technoscience and biomedicine (see, for example, Horst and Irwin 2010; Degeling et al. 2015; Madden and Speed 2017). Michael's (2012) work asks what we are ‘busy doing’ as social researchers in this field when the participants ‘misbehave’. Here, the parameters of engagement events are ‘over-spilled’ and in the process the constitution of identities, relevant agendas and technologies are troubled. Felt and Fochler (2010) have also argued that we need to attend to how participants ‘resist’ the framing of participatory exercises, including how they reconstitute individual and collective identities and salient issues and concerns. We take up these challenges to reflect on how participation was troubled through the process of our own research and engagement practices and in the genomic technologies and initiatives we studied. In this chapter we explore how non-participation and limited participation in interviews and observations unfolded over the course of our project as a means of critically interrogating the participatory impetus in personalised cancer medicine, offering this as a useful counterpoint to the stories of participation we have presented thus far, and extending our analysis of the threads of resistance we have identified.

We were inevitably limited in terms of the kinds of patients and other potential participants we were able to approach regarding our study because of research governance, including ethical approval to work in an NHS setting. There are well-known criticisms of the constraining effect of these arrangements on ethnographic research, but we will not rehearse these here (see Murphy and Dingwall 2007). Instead we will reflect on the implications of the day-to-day and micro-instances of refusal, reworking and delimiting participation that we encountered over the course of the research, starting at the beginning of our work when we sought to ‘scope’ the field.

Scoping personalised cancer medicine

When we began our project and prior to obtaining NHS ethical approval to enter the clinic to talk to patients in real time, we conducted a series of ‘scoping’ interviews with former patients and their relatives, in an effort to understand their experiences of and perspectives on personalised cancer medicine. We also established two Public and Patient Involvement groups to guide our research design, recruitment, ethical practice and dissemination activities. These participants were not recruited through the NHS. Although we gained valuable insights into the different meanings and challenges of personalised cancer medicine for patients through these activities, which guided our analytical approach in the research that followed, the participants who were most easily involved were typically white, middle-class and female.

Using snowballing and other recruitment strategies that relied on professional gatekeepers, patient advocates, charities and social media networks to recruit participants and representatives for our Public and Patient Involvement (PPI) panels captured a particular set of experiences and perspectives from patients, former patients and family members, who were often actively involved in efforts to control and manage their condition, be positive and contribute to research and treatment improvement – unlike other kinds of patients who were too unwell or alienated or otherwise disengaged from research and clinic care. Some of those who participated in our early scoping interviews or contributed to our PPI were nevertheless aware of their privilege, and made efforts to be reflective and to advocate for equality in the course of their encounters with our project. For example, some of the former patients we interviewed were involved in advocating for genomic medicine across various platforms, including in evidence groups in Europe, and as part of this they reflected on the (un)equal distribution of genomic medicine worldwide. One patient advocate, Toni, reflected on the extent to which this has the potential to exacerbate already existing health and social inequalities:

In elaborating concerns about the (re)production and exacerbation of inequalities in access to healthcare worldwide and the implementation of genomic medicine, Toni challenged dominant tropes of promise and precision, drawing attention to what Hall et al. have argued is ‘the transition from industrial to financial capitalism in Europe’ which has effected ‘deepening inequalities of income, health and life chances within and between countries’ (2014: 9).

Another patient advocate, Adele, who had survived melanoma and secondary lung cancer, noted that an important part of her role was to ensure that inequities were also attended to in terms of cancer types, with patients who suffered from rarer cancers often neglected by pharmaceutical companies and researchers:

However, the capacity to challenge and tackle inequality from a position of privilege risks further entrenching privileged voices, as with professionals advocating on behalf of patients (including social researchers). We can capture this by contrasting the account above with those of other participants in this early phase of our project, who told us how difficult it was to become involved in this kind of advocacy or support work. We met Karin through a local lung cancer support group. After an unexpected cancer diagnosis, only months after she had quit smoking, Karin started to volunteer at a cancer charity and then developed her role as more of a campaigner on cancer awareness and prevention. However, she found it difficult to attend meetings as she had to rely on public transport. Karin shared her experience of attending a medical conference to which patient advocates and representatives were invited:

In addition to the structural barriers to participation and a feeling of being ‘out of place’ at meetings with professionals, participants also told us that online support groups were not always places where they felt and experienced support because the issues being discussed were not relevant to their day-to-day struggles. For example, John, who had experienced pancreatic cancer, told us that ‘dealing with money’ was much more difficult than the issues typically discussed in his support group, leading on to a long passage of reflection on these difficulties:

The day-to-day struggles of living with cancer, which included managing money and employment, and even the act of travelling to support groups, were readily discussed in interviews. Two pancreatic patients who were taking part in a world-leading trial involving genomic sequencing and novel combination therapies discussed the seemingly mundane issue of finding a parking space prior to their weekly clinic appointment in their interviews. One of these patients described the effort she made to arrive at the hospital early, to avoid the additional fees entailed in parking at a nearby hotel. This then impacted on research nurses’ work patterns, as they continuously adapted to accommodate those patients who were arriving earlier than their scheduled appointments. Through these kinds of accounts, we come to see that genomics and personalised medicine research depend upon patients devoting time as well as financial resources to their participation.

The structural and cultural limitations placed on participation in cancer support and patient engagement were further underscored by the difficulties of discussing genomics and personalised cancer medicine across these earlier interviews. Participants could have very little to say about this area of medicine, not just because they did not think they had experienced it directly, but also because it was difficult to make sense of. Many expressed concerns that they were not sufficiently knowledgeable to have a view worth recording, or that it was simply not part of their ‘zones of relevance’ (Parsons and Atkinson 1992). These interviews were typically detailed personal stories of cancer journeys and anticipated futures, and genomics did not tend to figure for many patients. Sometimes when it was raised by the interviewer we found interviewees reworking the question to deliver information and perspectives of more relevance to them. For example, in one interview with Jane, a former breast cancer patient introduced in Chapter 1, who spoke about all of the research she had done as a patient, the following exchange took place:

In this account Jane worked the question about genomics into an account of her cancer subtype to make salient the story of her own research, and her difficulties with getting the treating clinicians to engage with her personal story and concerns about why she had developed this kind of cancer, focusing on the journey travelled rather than the future we asked her to speculate about.

Former patients agreed to be interviewed for a range of reasons, but a common theme was their desire to ‘give something back’ to the health service or other patients by helping with our research – anticipating a beneficial future. This reciprocity is, of course, key to participation in health and social research, and is actively encouraged in a lot of clinical research (although we were much more uncomfortable with being cast in this light, given that our research will not directly inform or improve clinical practice). In our study it also provided an occasion for participants to perform gratitude and responsible patienthood, crafting their own patient narrative as a process of recovery and reaffirmation after their cancer experiences. Questions about genomics could therefore become a kind of prop for the articulation of their own subjectivities, desires and priorities, as in the following excerpt from an interview with Carol, who had gone through two different cancers, malignant melanoma and breast cancer, one after another:

This illustrates how participation was an active process, where the meaning of participation was reworked, including via subtle forms of non-engagement with the details of particular questions. This could include occasions when invitations to speculate about the future were reframed, in some cases to articulate more familiar and productive narratives demonstrating responsible and active patienthood.

Former patients and their relatives could also critically reflect on care received and the limited place of genomics as part of the wider future of cancer research and care. As we have said, this included situations where genomics was rarely touched upon. It also included participants ‘talking back to science’ by reflecting on particular barriers or challenges associated with accessing healthcare in the NHS that were marked by race, class and gender. One woman, Mina, who had lost her mother to cancer, told us about her uneven experience of care. Her mother, who she told us was a successful and independent woman and a manager in her workplace, spoke very little English, and so healthcare encounters did not always involve the kind of care the family expected:

Although elsewhere this participant praised the NHS and the care her mother received, her experience of not being ‘fully part’ of the care infrastructures around cancer were reflected in her account of research participation as not being something she would herself consider:

This passage shows how the participant connected her experiences and capacity to take up care with active interest in information, in contrast to her mother, but did not go so far as to see this as invoking a reciprocal responsibility on her part to research, which was framed as something for scientists to ‘get on with’.

Another woman, Saira, also spoke about the burden of caring for her mother, including giving up full-time work to look after her and attend appointments. When asked to reflect on the inclusion of patients in healthcare initiatives and genomic medicine, her account captures the institutionalised disconnection between ‘science’ and older black and ethnic minority cancer patients through a focus on language barriers:

Later in the interview Saira stressed the importance of communicating directly with BAME communities via spaces such as mosques in order to build relationships as a step towards improving inclusion and engagement; a means of co-production.

As Grace, a cancer charity representative, explained, building relationships was particularly important, given that interactions between the black community and health professionals were shaped by ‘historically grounded’ distrust over incidents such as the Tuskegee experiment. ¹ She reflected that this has contributed to an under-representation of black and minority ethnic individuals in clinical trials, an issue which was also raised by Zoe, introduced in Chapter 2. This brought other kinds of additional work to some patients from ethnic minorities in engaging with the science. For example, when researching the Oncotype DX test, Zoe, a health professional, questioned whether she could ‘rely’ on the US-based TAILORx trial because of its study population, and thus looked to research originating in other continents for additional insight:

Zoe's treatment decisions entailed an added layer of complexity as she reflected on the origin of study results and their applicability to her situation, issues not faced by the majority of our research participants.

Together, these examples of critical reflection about structural and cultural barriers to participation in cancer research and support, as well as instances where discussions were repurposed away from genomics to something more meaningful for participants, demonstrate the structural, ongoing ways in which certain voices and experiences are excluded from participation in social and genomic research. This highlights some of the reasons for the absence of less privileged patients and advocates from our research and from precision medicine more generally, pressing us to think more critically about the limits on participation in our study, as we now go on to discuss further.

Accessing personalised medicine participants

When we were negotiating access and recruitment of patients in the clinic, we encountered further complex dynamics of non- and reworked participation in our own research and the genomic technologies and research that we explored as potential or actual case studies. We were already constrained in the project design when we were only granted ethical approval to study specific genomic interventions in cancer clinics and to approach people who were interested in or had actually participated in genomic tests, treatments and research in order to prevent an undue burden being placed on those who had declined. This limited our capacity to understand why patients do not participate and further skewed our sample to patients with the resources to participate. This inevitably also resulted in our research only engaging with those patients in better health, as a common reason for non-participation, despite initial interest and even consent to contribute to genomic research, was that the patient was too ill to participate or passed away while we were recruiting for our research. Such constraints also led to a focus on particular kinds of cancers and not others. Although we tried to avoid concentrating on well-resourced and well-researched cancers such as breast cancer, this was the most appropriate area in which to study genomic profiling in mainstream practice, given its maturity in this patient population. We also focused on gynaecological cancers and lung cancers as less resourced and researched cancers, but this also skewed our sample towards a predominantly female population, given the focus on women's cancers and the difficulties we faced in accessing lung cancer patients who were very sick. This limited our insights into how men manage cancer and incorporate their understandings of genomic medicine and research therein (Wenger and Oliffe 2014). Our study of the 100,000 Genomes Project allowed us to focus on a range of other cancers too, but the dynamics of research interest and investment across different cancer types meant we tended not to access many patients with rarer forms of cancer.

Participation was further restricted through the recruitment process, as we relied upon gatekeepers to facilitate the projects. Clinicians’ ambivalence about the meaning of genomics and personalised cancer medicine was a striking and somewhat unexpected feature of these arrangements. After working with a group of supportive clinicians and scientists to obtain ethical approval for ethnographic research in hospitals, we focused on particular case studies of personalised cancer medicine involving genomics. We approached a range of oncologists and pathologists working across cancer clinics and laboratories to develop our cases, but quickly learned that the focus of our study had little resonance or meaning for some of those we spoke with, to the extent that it was often difficult or impossible to organise their participation in the research or a role as a gatekeeper to other participants. One particular breast cancer consultant who helped in the early stages of our project development expressed some of this in an interview, where he was notably sceptical about personalised cancer medicine with a focus on genomic tests, treatments and research:

Clinicians’ active non-participation in the promissory, transformative visions of genomics meant that accessing patients, tests and technologies to study could be difficult, as they were seen as insufficiently novel to be worthy of our (and clinicians’ attention). Beyond a fairly small group of pioneers and enthusiasts for genomic research medicine in cancer who were keen to support our work, there were other clinicians who were much more sceptical about the value of genomics and research into its implications.

Other clinicians were reticent or frustrated in their efforts to participate or facilitate patient participation in genomic medicine and our study because of a range of factors. This could arise because the study or trial we wanted to follow was not yet recruiting or because there were concerns about the lack of progress in the initiatives we wanted to explore, for example when not many patients were being recruited and the trial or study was seen as precarious and in danger of failure (as discussed in Chapter 4). At other times, concerns about the burden of participation on patients or staff meant that we were not able to observe or approach patients for interviews – their situation was too difficult to warrant such an intrusion. These considerations were heavily shaped by the perspective of research nurses who acted as principal gatekeepers, but also our own sense of what would be intrusive, based on our research and personal experiences. As a team we constantly reviewed our ethical approaches, but also reflected on our ‘personal ethics’, which similarly regulated the participants we (re)approached. For example, in our work with pancreatic cancer, associated with poorer survival outcomes than many other cancers, of four patients being followed up in a particular study arm we were hoping to observe, two participated in our study. In one case, after the researcher approached the patient for interview in line with ethical approval, the research nurse disclosed that the patient had not received the scan results she had hoped for. At this stage, having gained the patient's contact details, follow-up became solely at the discretion of the researcher. In this, as in other instances, researchers became their own ethical gatekeepers; reflecting on how many times to make contact, what this contact might be, and when to stop. In this case, due to the sensitivity of the patient's situation, only one (unsuccessful) attempt at contact was made. This patient's experiences of pancreatic cancer trial participation, which are seldom recorded in social research, were therefore not included in our study. Such decisions surrounding recruitment were personal and contextual due to the rapidly changing nature of individual patients’ health status and circumstances.

At other times participation was not possible because clinics were busy, appointments were missed or clinicians were too preoccupied with other, more urgent issues. We were advised to avoid relying on consultants as gatekeepers, limiting their participation and intensifying that of nurses, as in the fieldnote below: ‘The consultant explained that it may be best to approach patients at the point of consent and to leave consultants out of the situation, “take the consultants out of the equation because we forget”.’ This capacity to forget also extended to recruitment for the studies we sought to follow, as captured in the fieldnote below:

Sometimes clinicians’ inattention or lack of facilitation was a more active refusal, albeit from a position of privilege, as in this excerpt:

These excerpts capture the emotional and articulation work of practitioners involved in recruiting participants to our study. It shows clinicians acting to protect patients and prioritise current care over research which might bring benefits in the future, the ‘waiting around’ involved, and the missed opportunities for recruitment, as well as the complexities of dealing with busy clinicians and very sick patients. Genomic research in this context was not standardised or routinised in the clinic, nor was it special enough to warrant practitioners’ strong investment in studies of its effects or potential, constituting another requirement in a long list of considerations for practitioners to negotiate backstage and at times frontstage with patients. We experienced similar tensions around observations in some laboratories that were under pressure in terms of workload and resources, particularly histopathology, where there was a sense that genomic testing was adding additional work without additional support, that its promise was overblown and exaggerated, and that our presence would have taken up too much time.

The make-up of clinical teams we worked with reflected gendered hierarchies in medicine: the majority of consultants were men (although the breast cancer team had a high number of female consultants in comparison to lung cancer, which had only two female consultants in the team) and the majority of nurses and clinical trials assistants who were involved in recruiting patients and caring for patients on trial were women. This stratification of medical work by gender accords with a long history of social science literature which demonstrates the feminisation of care work (Tronto 1993; see also Allen 2014; Allen and Hughes 2017). This work was intensified as nurses were called upon to act as gatekeepers and to aid with the recruitment to our study, given that consultants were often too time-pressured and tended to ‘forget’.

Nurses took on much of the responsibility for the facilitation of our study in these challenging situations – crafting participation involved careful and intense articulation and emotional work across an ever-changing array of situations. This involved managing other clinicians’ refusals and deflections, juggling staff shortages, training and workloads, but it also involved managing discomfort and a sense of concern about participation exposing deficiencies in the nurses’ competencies or practice, as we noted in Chapter 5. Although we worked hard to avoid this and to limit the burdens created by our presence, we intensified and at times unsettled their work. This can be illustrated through our experiences of being told that nurses or clinical trials assistants were concerned about their level of knowledge about genomics and their capacity to participate in our research and enable the participation of patients in research more generally. For example, in one observation session, as we made our way to the clinic, the researcher asked the clinical trials assistant about observing other consent meetings for the 100,000 Genomes Project, and noted: ‘she seemed quite reluctant to discuss this despite agreeing – changed the subject and exclaimed “you can watch me make a mess of the consent process and judge how I do it, yes!”’ Towards the end of the session the clinical trials assistant joked again about being observed:

Here the clinical trials assistant expresses discomfort about the quality and implications of her participation and seeks reassurance from the researcher, further demonstrating a limit on participation we encountered across our research with practitioners and patients, but also troubling the identity of the researcher and challenging us to acknowledge the burdens we generate when we ask clinicians to facilitate our research.

As we have already noted, some cancers get more attention and resources than others, and some patients with particular kinds of cancers are more readily involved in genomic medicine than others as different kinds of privilege play out across research and clinical care. Patients, such as the advocate quoted at the beginning of the chapter, and clinicians can be acutely aware of these inequalities. A lack of privilege can be experienced as unwelcome forms of non-participation or exclusion from the promise and investment of genomic medicine. We have already explored some of this in the accounts of clinicians concerning patients feeling left behind or excluded from the possible benefits of personalised cancer medicine. Patients also discussed this, as in the extract below from an interview with a lung cancer patient, Hilary, and her daughter, Rose:

As well as discussing stigma and their sense of blame (see also Chapple et al. 2004), these interviewees implicitly criticised the focus on molecular rather than environmental factors in cancer, and highlighted the ways in which care providers as well as friends and family can make patients feel culpable and unworthy of support as they participate in care.

Accessing the experiences of working-class patients for whom cancers such as lung cancer were more prevalent was difficult given the extremely low survival rates of these patients. Although our sample consists predominantly of middle-class voices, there were numerous instances during interviews where concerns around inequality were raised or discussed, particularly in relation to patients having to seek financial assistance (particularly those in precarious work), lone parents, or people who had not gone through higher education. In one interview with Janet, a patient involved in the SMP2/Matrix study we followed, who we introduced in Chapter 4, these barriers to participation in support, care and research were starkly illustrated:

Later, discussing her involvement in research, Janet expressed gratitude to medical science and willingness to ‘be a guinea pig’:

These excerpts illustrate the tension in participation for patients from underprivileged backgrounds negotiating stigma and a lack of the time and resources required to receive care, let alone participate in research, including something as basic as getting sick leave. At the same time they signal an enduring commitment to support research, to trust in institutions and companies and a willingness to be experimental subjects as a gamble on becoming well again.

Our study design, like that of the genomic technologies, research and trials we sought to follow and understand, relied on patients participating. But as we have discussed, this was hampered and reconfigured by the contexts in which we approached patients and the ways in which those discussions were repurposed by interviewees, for example to perform particular versions of good patienthood or experience therapeutic benefit. We also encountered numerous situations where patients were not able or willing to participate in our research either in general or throughout the course of interviews/observations, especially when we asked more specifically about genomics. Sometimes these forms of non- or reworked participation appeared planned or deliberate, but at other times they were more difficult or unexpected for patients, for example when they became very emotional or confused during an interview.

As we have already discussed, practitioners protected vulnerable patients from participation in our research and some of the research, trials, tests or treatments we were studying. This process of limiting participation was crucial to the ethical conduct of the research: the emotional work of the nurses involved can be seen in the following excerpt:

Here the nurse facilitates non-participation in our research because of concerns about the health of the patient and the burden of being observed while being given a distressing diagnosis.

We can also see the complex work involved in the process of mediating participation in the following fieldnote:

This excerpt further illustrates how recruitment and participation took considerable choreography in the context of busy, often understaffed clinics where clinical teams are formed on each occasion the clinic convenes. Participation in personalised medicine was acutely difficult to deliver for sick and vulnerable patients facing foreshortened futures in this complex, pressurised environment.

On other occasions patients or their relatives declined to participate because they were too unwell or overwhelmed by their experiences, as in the fieldnote excerpt below:

This ‘informed refusal’ (Benjamin 2016) captures some of the burdens of participation in research, given that patients were often approached about research studies in the course of difficult and sometimes overwhelming treatment protocols. We can also identify some of this burden by reflecting on instances where patients initially agreed to participate but then did not respond to follow-up enquiries. At other times they did not attend appointments where their consent was being sought to participate in genomic research (and our research). This non-attendance was a common occurrence and can be explained in part by the complexities of the research recruitment arrangements and the requirement of patients to attend yet another appointment which could be quite lengthy. However, we might also think about non-attendance as a means of troubling or reworking the salience of our focus on genomics as special and of experiences of genomic studies as particularly worthy of social research – in this case the patient's relative explained quite clearly it is simply not important enough to justify time and energy that is already in short supply.

Given how sick and how busy patients are, it is remarkable that they find the time to participate in research that does not benefit them directly, including our study. Their participation did generate opportunities to reflect on identities and to express concerns, and to tell their stories more generally, but it also formed part of their responsibilities to reciprocate care or help future patients, including perhaps their own families. This kind of participation was not, however, without its limits, some of which could be quite discomforting for all involved. Misunderstandings about the purpose of our research, the role of the interviewer and the potential to benefit were among the most difficult aspects of these limits on participation. This is not because participation was somehow not ‘up to par’ as a result, but because it demonstrates some of the deep-rooted problems with the participatory logic of personalised medicine, which relies on a complex consent process to gather data but places considerable burdens on patients in terms of time and thinking through their participation, taking advantage of patients’ need to reciprocate care and glossing over the benefit they might receive as a result. As we discussed in Chapter 5, patients can be inventive in obtaining value from participation despite these issues, eschewing the need to be genomically literate, for example. But this kind of revaluation also curtailed participation. We can illustrate this in the following excerpt from an interview with Terry, after her surgery for colorectal cancer, who was initially confused about the research she had participated in:

Here Terry struggles to make sense of what she has agreed to be part of and our role therein, falling back on familiar logics of reciprocity, future benefit and active patienthood to justify her involvement and collaborating with the researcher, while masking the lack of engagement in or salience of genomics.

Public engagement

Our study did not just take place in hospitals and clinics; we also endeavoured to study how cancer patients and relatives engaged with personalised medicine beyond these institutions, through advocacy, engagement exercises and involvement initiatives. As we have already discussed, these situations are not places where everyone feels that they can belong, nor are they always easy to attend given other commitments and barriers. Like our own Public and Patient Involvement panels, these forms of engagement are more often taken up by white, middle-class participants.

Lack of representation of ethnic and other minorities in genomic datasets and engagement exercises has, of course, been an ongoing source of concern for practitioners and policymakers. Much of this is framed in terms of a historic lack of trust on the part of marginalised communities, alienated by a series of scandals and exploitations including biopiracy, experimentation and commercial exploitation of tissue without any effort towards benefit sharing (Hamilton 2008; TallBear 2013; Skloot 2017). Together with contemporary experiences of institutionalised racism, this means that Black, Asian, and minority ethnic (BAME) groups and other marginalised communities also have a history of lower rates of participation in screening and research into cancer more generally. However, as Benjamin (2016) notes, there is a danger in framing these instances and patterns of non-participation as problems of trust, when the problem is perceived as being located with the community rather than the institutions and professionals who have behaved in systematically untrustworthy ways. And there is continued reason to be wary of a biomedical economy intent on data maximisation when BAME patients can be further disempowered by being framed as an untapped resource. This links to a wider set of challenges to the colonial and racialised practices of biomedicine, which have been dominated by white, male standpoints, framed as a ‘god's eye’ view devoid of ‘bias’ (Haraway 1988), but ultimately shaped by the interests of these dominant groups in maintaining power and privilege. It is reflected in Public and Patient Involvement practices focused on solutions and health improvements but reproducing health inequalities by amplifying a narrow range of perspectives, experiences and interests in the process (de Freitas and Martin 2015; Madden and Speed 2017).

Broadening and diversifying participation in engagement and in genomic research more generally becomes part of policy and institutional practices around these initiatives. The 100,000 Genomes Project involved a range of initiatives to access ‘harder to reach’ communities, particularly potential BAME participants. In 2019 the Yorkshire and Humber Regional Genomics Service that was part of Genomics England worked with playwrights and actors to produce a play in collaboration with ethnic minority community groups to promote inclusion in genomic medicine via ‘culturally sensitive’ education. ² The purpose of the play was also to address and ameliorate some of the concerns about biomedical innovation from within these communities. The play was described as follows on the Genomic Medicine Service website:

The play is focused around a conversation between two neighbours in which the black British Caribbean character expresses doubts and concerns about genomic research and the British Indian neighbour is more positive and hopeful about its potential to ‘ease suffering’. The issues raised, generated in discussion with people from these communities, include historic abuses and discrimination against black patients and research participants and ongoing scandals such as the Windrush affair, which involved people from the black community being deported despite having lived and worked in the UK for many years. The black character is, however, reassured by her neighbour that researchers, and science, are not racist and we ‘have to start trusting at some point’.

We also encountered similar concerns when we approached people from these communities about involvement in our work, including particular criticism of the use of informed consent forms as off-putting and needlessly bureaucratic. We offered reassurance about the ethical intent of this approach but this was not always convincing. Reflecting on this focus on resolving ‘distrust’ therefore requires further exploration. As Benjamin notes,

Accessing the experiences of subjugated populations is critical to driving inclusive genomic medicine and yet requires a systematic restructuring of systems of white privilege within biomedicine more generally, including in our case ethical protocols, informed consent processes and forms of engagement. It is also important to note that efforts to promote genomic medicine have the potential to both strip science of its cultural conditions of production – ‘science is not racist’ – and reify the problematic idea that race and categories of race are biologically defined; a notion which circulated in observations when patients were recruited to genomic medicine, as we see in the observation notes with a CTA below.

Conclusion

Not participating at all, being unable, unwilling, uninvited or limited in capacity to engage are key features of patient and practitioner experiences of personalised medicine and the plethora of research on which it relies. This limits the kinds of data and value obtained from participation, as well as limiting the potential for harm to arise from too much or too intense participation. At the same time, it configures the futures crafted, voices and experiences of participation and associated care to those well enough or sufficiently motivated or enthusiastic to participate. Some of these dynamics intensify promissory and positive tropes and underplay negative experiences in the process. They privilege enthusiastic voices and framings which emphasise the novelty or neutrality of science and technology. But attending to non-participation allows us to reflect on how practitioners and patients can refuse, resist and subvert these kinds of anticipatory logics through silence, or by turning away from the future to ground reflection in the mundane realities of managing day-to-day, or in stories rooted in the past, and privileging other kinds of care as a way of reconstituting identity in cancer's wake.

Reflecting on these processes of non-participation or limited participation also highlights how some cancers and patients are better resourced in terms of treatment and support infrastructures as well as research opportunities. Capturing the experiences of other more marginalised cancers with lower survival rates and less research investment (see All Party Parliamentary Group on Cancer 2009) was difficult in our study, because genomic medicine is being implemented with most success in cancers with a track record of research and improved treatment and via well-established organisational infrastructures. This can map on to some kinds of privilege for patients; for example, breast cancer is an area with considerable research investment and improved prospects, and is also associated with visible activism and is more common among those living in advantaged circumstances. These confluences can mean that patients with these kinds of cancers, outcomes and backgrounds are more likely to participate in research and its associated care, including social research like our study, as part of their active patienthood, and to have more hopeful visions of the future. This further constrains the kinds of experiential accounts on which we can draw to understand the impact of personalised medicine, rendering less visible experiences of the dark side of care, including failure, ambivalence, despair, disengagement and rejection. Exploring the margins or limits of participation, whether deliberately imposed or arising from organisational complexities, invites us to think more carefully about the kinds of practitioners and patients who are not able to (fully) participate in the promise of personalised medicine, and the need to attenuate and challenge overly optimistic promissory visions to attend to these limits. It also challenges us to think critically about the responsibilities and expectations of participation in the P4 era, particularly the intensification of work for key practitioners such as nurses and for patients as well.