Lung cancer after the genomic turn: From the biopolitics of ‘lifestyle’ to the transcorporeality of breath

Abstract

The lungs serve as a site of interchange between the bodily and environmental, an interface between the internal and external world, enacted through breath. We draw on the primacy of this exchange to explore the complexities of living with lung cancer amidst the enduring social challenge of stigma and the advent of ‘targeted therapies’ at the cutting edge of precision medicine. Lung cancer’s association with smoking and resulting stigmatisation of those with lung cancer has been well documented – positioning those with lung cancer as failed subjects of a biopolitics of lifestyle. However, recent developments in ‘precision medicine’ have drawn attention to alternate, genetic causes of lung cancer, disrupting easy equivalences between deviant cells (malignancy) and deviant conduct (smoking). Despite this, and drawing on interviews with 32 people receiving targeted therapy for lung cancer in Australia, we identify enduring resonances of deviance and stigma which still foreground individual lifestyle and blame, even for those – like many participants in this study – who have never smoked. Even in the context of uncertain causal origins and genetic mutations, the stigma of lung cancer and the figure of ‘the smoker’ as an object of abjection and disavowal persists. We find Alaimo’s concept of transcorporeality instructive for moving away from this biopolitics of lifestyle, toward greater recognition of the collective, though unequal, conditions of ‘carcinogenic capitalism’ in which we all must live and breathe. In turn, our analysis of the specificities of lung cancer may inform broader sociological approaches to tackle stigma at a structural level.

Introduction

[W]hile breathing is a force of life, it is also a matter of dying, in which, for example, the oxygenation of every breath has its physiological toll. Breathing is also an event of bringing the outside in and the inside out. As a continuous metabolism of air in the movement through the lungs; in the flow of oxygen through the veins, organs and cells; and in the exhalation that lets the breath out, breathing opens the horizon of what it means to be a human breathing subject beyond conventional boundaries of human embodiment. (Górska, 2016, p. 28)

From the moment of one’s first breath until their very last, the act of breathing is fundamental to one’s being in the world. Breathing is, in essence, an act of interchange: we breathe air from our environments into our lungs, and our exhalations later become one with our surrounds. Occupying a unique place in both our bodies and our cultural imaginary, the lungs are the primary interface between the body’s interior and its (potentially toxic) surrounds. What happens when this interchange is troubled, for example when the function of our lungs-as-interface is disrupted by illness? Such disruptions raise complex social questions relating to ideals of embodied individuality, bodily conduct, the subconscious operation of bodily processes, and the circumstance of various ‘exposures’. In particular, lung cancer presents a unique set of considerations in the present historical moment amidst evolving understandings of its causal origins and new treatment options, in particular through the ‘targeted’ therapies of ‘precision’ oncology. Here, we consider lung cancer as a potent site for examining the stubborn endurance of stigma, the complex entanglement of bodies, governance, responsibilisation, and the persistent search for ‘blame’ within an enduring biopolitics of ‘lifestyle’.

Lung cancer carries a specific cultural and social valence, strongly associated with high mortality rates and often referred to as a ‘death sentence’. Further, the strong and long-standing epidemiological connections between lung cancer and smoking compound the complexities of living with lung cancer today, as people with lung cancer are often blamed by the public and health professionals for ‘causing’ or at least contributing to their own illness via the ‘lifestyle’ decisions to smoke. Until recently – and still in many areas of the world – treatment options for lung cancer consisted of surgery if caught early enough, and systemic chemotherapy for more advanced and metastatic disease (Joshi et al., 2020). However, the landscape of lung cancer research and treatment is changing. Therapeutic options have rapidly evolved such that treatment for lung cancer today can require little more than a daily pill, which arrests the growth of the tumour, albeit temporarily. The immediate implication of ‘lifestyle’ in lung cancer – the assumption from both health professionals and the public that those with lung cancer are smokers – has been troubled in the oncological landscape by the recent focus on precision medicine for lung cancer that has a genetic causation (Löwy, 2022), and in the public sphere, by increasing news coverage of the many subjects of lung cancer who have never smoked (Roberts, 2021). Yet, as we discovered in our research, the discursive positioning of ‘the smoker’ as a failed biopolitical subject endures nonetheless. Despite cutting-edge advances in targeted therapies, the persistence of lung cancer stigma remains a complex sociological concern.

Drawing on in-depth qualitative interviews conducted with 32 people living with lung cancer and undergoing targeted therapies in Australia, we examine some of the ongoing challenges of lung cancer’s legacy of abjection in the contemporary context of precision medicine. This includes participants’ encounters with stigma, as both experienced and enacted by them, cementing the enduring legacy of the smoker as an object of disavowal. Whilst the promise of precision medicine at the cutting edge of innovation signals various affects of hope and progress, at the same time, we argue, it demonstrates the stubborn endurance of lung cancer stigma, abjection and disavowal.

Examining the ways that the ‘uncanniness’ of genetic mutation and uncertain causation is experienced in the context of targeted therapies for lung cancer, we draw on feminist theory to propose a transcorporeality of breath – a recognition of the porous boundaries and entanglements of the body and the environment – to demonstrate the ways in which lung cancer is much more-than-cellular, bodily or individual. We propose such an approach as a more promising alternative to the ‘blame game’ of lung cancer and other ‘lifestyle’ diseases. Instead, we position the transcorporeality of breath as disruptive of the biopolitics of ‘lifestyle’, as an onto-ethico-epistemological (Barad, 2007) analytic of breathing as always already entangled and shared amongst porous bodies, albeit from vastly unequal positions. Such an approach also demands more sustained attention to the collective environments in which individuals live and breathe, and to the forms of ‘epistemic ignorance’ and ‘carcinogenic capitalism’ that direct causal attention to genetics and lifestyle above all else.

Background

Lung cancer has become a ‘paradigmatic case’ for precision medicine (Michelotti et al., 2022), with genomic approaches increasing survival time for some cancers almost nine-fold over conventional (i.e. no gene testing) scenarios (Hofmarcher et al., 2023). Since the early 2000s, developments in precision oncology have led to the rise of targeted therapies that work to identify and attack cancer cells at the molecular level (Prasad et al., 2016). Genetic mutations responsible for cancer growth have been identified as ‘druggable targets’ for targeted cancer therapies (Dobosz & Dzieciątkowski, 2019). For patients diagnosed with the specific mutations found in their tumour’s genetic make-up, novel therapeutics that arrest tumour growth can effectively prolong a patient’s survival period if not ‘curing’ their cancer in the conventional sense of the term (Broom et al., 2022). Identifying so-called ‘druggable’ targets – genes that can be manipulated using new targeted therapies to arrest tumour growth – has been fruitful in particular lung cancers, including non-small cell lung cancer (NSCLC), giving rise to the development and introduction of a number of different precision therapies over the last decade (Skoulidis & Heymach, 2019).

Precision medicine and targeted therapies have been the focus of recent sociological and social scientific scholarship, including such wide-ranging topics as sociotechnical imaginaries (Chiapperino & Testa, 2016), the ethical dimensions of innovation (Kerr et al., 2018), and entanglements with the inequities of market-driven health systems (Ackerman, 2022). Sociological scholarship has also engaged closely with the implications of targeted therapies in the context of cancer care and treatment, including conceptualising personalised medicine as a form of embodied innovation (Kerr & Cunningham-Burley, 2015), as an active agent in the shaping and figuration of disease (Viney & Day, 2022), as well as their impacts on those living with cancer, including increasing complications in an already-complex patient pathway (Day et al., 2017); a rise in self and collective advocacy (Kerr et al., 2021); and ontological questions related to surviving-with malignancy (Broom et al., 2022; Kenny et al., 2021). While precision medicine promises new horizons of cancer treatment and care, including vastly improved timescales of living, scholarship has also pointed to the potential over-promise of precision medicine and the detrimental effects for patients and clinicians, as well as the considerable expense and strain on the medical system that the promissory discourses and expensive therapeutics impose (Kerr et al., 2019). In Australia, some targeted therapies can be accessed through the national public insurance scheme, Medicare, while others require private health insurance and/or incur significant out-of-pocket expenses.

Much like cancer treatment more generally, then, there are wide disparities in access to targeted therapies dependent on socioeconomic status. However, the stigmatisation of lung cancer and its association with smoking has served to demote it as both a research priority and matter of social concern. The effects of this are striking – a study from the Global Lung Cancer Coalition (2021) found that 28% of Australians have less sympathy for those with lung cancer than for those with other forms of cancer, and lung cancer research receives around 30% of the funding devoted to breast cancer research despite being the leading cause of cancer-related death both in Australia and worldwide (Cancer Australia, 2014). The conceptualisation of lung cancer as a ‘dirty disease’ requires critical approaches to reorient and modernise public discourses on lung cancer, including understanding the analytic of shame/blame that contributes to the stigmatisation of ‘the smoker’ as abject.

Abjection, shame and blame

Social science scholarship on cancer has long identified the intersection of stigma and abjection, including affects of shame, uncertainty, hope and deservingness (Ehlers & Krupar, 2022; Kenny et al., 2023; Parton et al., 2016). Sociological literatures have engaged closely with the multifaceted concept of abjection (Addison, 2023; Duschinsky, 2013; Hughes, 2019), which, as so influentially articulated by Kristeva (1982), includes reactions of horror, disgust or revulsion at that which threatens our sense of order and cleanliness, including an awareness of our own materiality and of the inevitability of death. Abjection, Kristeva argues, also plays a key role in upholding social norms and boundaries and is thus tied closely to taboo, shame and blame. The relationship between abjection and shame evokes what Scambler (2020) describes as a moral deficit in which the individual is deemed to be culpable and at fault. This is evidently so in the case of smoking, where stigma is weaponised through anti-smoking public health campaigns and blame is attributed in abjection, because ‘The abject can most easily be sanctioned, punished and abandoned by the state’ (p. 102).

Lung cancer is intimately entangled with the figure of ‘the smoker’, who is reified as a failed biopolitical subject and an object of disavowal. The advent of targeted therapies in the treatment of lung cancer seems to direct attention to alternative, genomic aetiological pathways. So far, this potential has received less attention in the social science literature. However, and as we explore below, the enduring legacy of ‘the smoker’ remains even in the face of the unruly agency of uncertain genetic causation, demonstrating an enduring biopolitics of ‘lifestyle’ and exercise of biopower as a ‘subtle but pervasive mechanism of continuous control’ (Donn, 2020, p. 44).

Carcinogenic conditions of modern living

In contrast to this enduring biopolitics, we argue that understanding the lungs as a potent material and discursive interface between the body and the environment gestures toward new ways to approach the cancer epidemic by emphasising the unequal exposure to carcinogens along lines of racial, class and global difference. The ‘blame’ that people diagnosed with lung cancer experience illustrates how different conceptions of lung cancer causation are downplayed in comparison to the causal weight placed on individual genetics and lifestyle choices, and how the possibility of cancer arising without external ‘lifestyle’ causation (Broom & Kenny, 2021) is more or less dismissed outright (Brown, 2007).

Lung cancer is a paradigmatic example of the ways in which stigma, abjection and shame work to relegate responsibility of illness onto individuals, conceptualising cancer as bounded to individual, discrete bodies. Feminist theorist Nina Lykke’s (2019) work on cancer cultures, the geopolitics of cancer and ‘carcinogenic capitalism’ helps illuminate the operationalisation of the ‘individual’ in the contemporary biopolitics of cancer. She describes her approach:

I suggest a critically disruptive approach to the epistemologies of ignorance that I claim characterize dominant Western discourses on cancer, which relegate questions of carcinogenic effects of human-induced pollutants, unhealthy working and living conditions to the margins, while focusing on genetics, individual lifestyles, and cures for the types of cancer, which are dominant in the West. Epistemologies of ignorance refer to epistemologies universalizing certain privileged outlooks, neglecting the possibility of other perspectives. (p. 110)

As we illustrate below, the intersection of targeted therapies and lung cancer demonstrates the pervasive insistence of ‘lifestyle’ causation, downplaying what Lykke (2019) identifies as cancer’s ‘worldwide coproduction by carcinogenic conditions related to postcolonial capitalism and “chemical modernity”’ (p. 112). The rising number of lung cancers with no clear causal link demonstrates that lung cancer causation increasingly lies outside of individual choice or lifestyle factors, discomforting though this may be. Disrupting lung cancer’s harmful dialectic of shame/blame requires critical approaches that make visible the structural underpinnings of Western biomedicine that emphasises genetics and lifestyle above all else (Brown, 2007).

The transcorporeality of breath

One potential avenue by which to move beyond the fetishisation of genes and lifestyles so dominant in Western biomedicine, public health campaigns and cultural imaginings of cancer is to attend to a transcorporeality of breath. Coined by feminist scholar Stacy Alaimo (2010), the concept of transcorporeality proposes a porous boundary between human bodies and the environment, which accommodates the flux not only between organs and environments, but among discourse, affect and positionality, as well. Transcorporeality, then, provides a fertile way to think through the role of the lungs and of breath in destabilising the idea of discrete, individual embodiment, reframing understandings of human bodies as sites of interchange and as deeply intertwined with our surrounding environments.

Breath has been explored in feminist theory (Górska, 2016, p. 22) and the social sciences, where the ontology of breath has been utilised to explore where consciousness and body meet (Macnaughton, 2020) and as a mode of relating to the world, troubling understandings of discrete boundaries (Oxley & Russell, 2020). As feminist theorist Górska explains:

. . . [breathing] can inspire diverse analyses of relational natural and cultural, material and social scapes that are oxygenated across diverse spaces, times, geopolitical relations, ecosystems, industries and urbanization while being situated in their phenomenal specificities. It becomes an enactment of movement and circulation within and across (human and nonhuman) bodies, spaces, species and cultures. Also, multiple forms of breathing (such as with technologies or with different kinds of air and the dust or pollution it contains) have the power to articulate how societal power relations materialize in and through, and are enacted by, bodies. (2016, p. 30)

In drawing breath, the lungs take in oxygen which is absorbed into the bloodstream. But when we breath, we do not take in oxygen alone. We also absorb other gasses and tiny particles that are present in our air at the same time – pollution, dusk or smoke, for example. Each breath we take is situated in the unique circumstances of one’s surroundings – a polluted city; a mine; an asbestos riddled house. Our atmospheric environments are encoded with the social, stratified along marginalised and racialised lines.

Attention to the transcorporeality of breath, especially vis-a-vis the lung, demonstrates the ways the human body ‘is never a rigidly enclosed, protected entity, but is vulnerable to the substances and flows of its environments, which may include industrial environments and their social/economic forces’ (Alaimo, 2010, p. 28). Here, drawing on the perspectives of those living with lung cancer, we attend to the enduring legacies and emerging possibilities presented by precision medicine, and for the potential to shift from a biopolitics of lifestyle, and the associated disavowal of ‘the smoker’, to attention to the transcorporeality of breath and how we all might be implicated therein.

Methods

The analysis presented here takes an inductive approach to 32 in-depth, semi-structured interviews with people living with lung cancer and receiving targeted therapies in Australia. Interviews were conducted from May 2020 to August 2021 as part of a broader programme of research into people’s experiences of cancer and cancer care in the era of precision oncology.

After gaining ethics approval through a metropolitan hospital on Australia’s east coast (Royal Brisbane & Women’s Hospital Human Research Ethics Committee [Ref No. HREC/2019/QRBW/50345: Precision and the person: A sociological study of therapeutic innovation in cancer care]), and using a purposive sampling method, potential participants who had sought out, tested genetically for and/or experienced targeted and/or immunotherapies over the course of their cancer care – as per the scope of the broader research programme – were initially approached by a clinician, researcher and/or consumer group organiser to explain the study. If they expressed interest, participants were then contacted via phone to initiate the informed written consent process and to schedule an interview (virtually via video call due to social distancing conditions). Following this, informed written consent was provided by those willing to participate. Twenty-four women and eight men aged 30–81 participated in semi-structured interviews that were carried out by a team of qualitative interviewers with experience carrying out research on sensitive topics.

Given the strong focus across the interviews on the stigma of smoking and its association with class, it is important to note that approximately 60% of participants interviewed were currently employed in, or had previously been employed in, managerial or professional roles (categorised as groups 1 and 2 according to the International Standard Classification of Occupations ISCO-08). A further 34% worked in technical, clerical, customer services and sales roles (ISCO-08 groups 4 and 5) and 6% worked in plant and machinery operations, or as drivers or labourers (ISCO-08 groups 6 and 8). While occupational data are only one way to test for social difference, the statistics above most likely reflect middle to upper-middle class representations of attitudes related to smoking and stigma.

Interviews iteratively explored a range of issues around participants’ lived experience of cancer and care and the relational and contextual dynamics of undergoing cancer treatment. Potentially difficult topics, such as experiences of stigma or shame, were approached sensitively with interviewers holding space for the expression of a wide range of experiences, including difficult ones, while avoiding participant distress by checking in regularly, and changing topics if needed. All participants were informed that they could access, listen to, edit or delete the audio recording, or withdraw their data from the study at any time, up until the point of transcription, after which the data were de-identified. No participants chose to withdraw, revise or edit their interviews in any way. The interviews ranged from 39 to 127 minutes, were audio-recorded, and later transcribed in full. Participants have been de-identified in this article to protect their anonymity, and assigned pseudonyms, instead.

For this article, we drew on interviews with people living with lung cancer and undergoing targeted therapies, and these data did not encompass interviews with clinicians or other medical professionals. This foregrounds the lived experience of participants who were forced to navigate the difficult terrain between the enduring social landscape of lung cancer and stigma, and the evolving frontier of novel medical knowledges and therapeutics. As a result, our approach to the richness of our participants’ stories involved understanding them as existing in a ‘mid-zone’ of public and medical discourses.

The methodology for this project draws on the interpretive traditions within qualitative research. This involved taking an in-depth exploratory approach to data collection, aimed at documenting the subjective and complex experiences of the participants. The aim was to achieve a detailed understanding of the varying positions adhered to, and to locate these within a spectrum of broader underlying beliefs and/or agendas. Data analysis was based on four questions adapted from Charmaz’s (1990) approach: What is the basis of a particular experience, action, belief, relationship or structure? What do these assume implicitly or explicitly about particular subjects and relationships? Of what larger process is this action/belief and so forth a part? What are the implications of such actions/beliefs for particular actors/institutional forms? The approach used was developmental, in that knowledge generated in the early interviews was challenged, compared with and built on by later ones. This approach provided an opportunity to establish initial themes and then search for divergent cases, complicating our observations and retaining the complexity of the data. Within this process, we continually sought to retain the richness of the respondents’ experiences, documenting atypical cases, conflicts and contradictions within the data. The final step involved revisiting the literature and seeking out conceptual tools that could be employed to make sense of the themes we identified from the data, which here focus on the lung as site of transcorporeal and social exchange, narratives of purity and contamination, and how these are being repatterned upon the evolving terrain of precision cancer therapy.

Results

Across the interviews participants shared their experiences of living with lung cancer and undergoing targeted therapies, including their frustrations with the enduring stigma they experienced. Simultaneously, the stigma and the associated blame and shame were both experienced and enacted by the participants. These intertwined dynamics demonstrate the need to consider more closely the subtlety of neoliberal biopolitics and its entanglements with carcinogenic capitalism. One such way to approach this entanglement is via what we call the transcorporeality of breath, which interrogates the ‘uncanniness’ of uncertain causation (as for those interviewed with non-small cell lung cancer undergoing targeted therapies) to emphasise the troubling foregrounding of ‘lifestyle’ as an aetiological pathway to lung cancer whilst downplaying the relevance of socioeconomic status, environmental toxicities and exposure to pollution (see Brown, 2007; Lykke, 2019). As such, the lung (and cancer thereof) serves as an important site for troubling the boundaries between internal and external environments and the logics of choice, responsibility and blame that traverse them.

‘. . . Did you smoke?’: Smoking, abjection and the long tail of stigma

Alongside the development of novel therapeutics remains lung cancer’s strongly stigmatised link with tobacco use amongst both health professionals and the public (Tran et al., 2015). Although initially slow to solidify, the links between lung cancer and smoking have led to successful public health campaigns and significant lowering of smoking rates in Australia and other economically wealthy industrialised countries over the last 40 years. As the excerpts below demonstrate, the success of these campaigns and resulting denormalisation of smoking has also given rise to the stigmatisation of smoking-related illnesses, even those – like lung cancer – that have other aetiological pathways, which are increasingly emphasised in the age of precision oncology.

During the interviews participants frequently expressed frustration that their lung cancer diagnosis was assumed to be associated with smoking – both within clinical settings and in everyday life – and many spoke of the ways in which they were questioned about their bodily conduct when disclosing their illness with others, as explained by Deborah:

. . . people that don’t know me very well, they might say, ‘Have you ever smoked?’ It’s one of the first questions that you get when you say you have lung cancer. Yeah.

While such enquiries were almost always experienced as a discomfort, participants also extended quite an empathetic understanding of the historical origins of such assumptions and the enduring legacy of stigmatisation. As Deborah continued:

I think it’s because of the [public health] campaigns [about] cigarettes actually. Our kids, when they were at school, they had great campaigns at school and I was always so impressed that they would show them what actually does happen to a set of lungs when a smoker has been smoking for a number of years and then what the lungs look like and what the disease looks like. My kids, they saw it and thought it was so gross that they would never want to smoke in their life. And I thought it was a great campaign.

But now I’m on this side of it, I think that’s been associated with lung cancer of course, and so therefore everybody that has lung cancer has smoked.

Here Deborah identifies the ways that anti-smoking public health campaigns explicitly operationalise stigma as a policy tool (Bell et al., 2010). Her changing subject position from a supporter of the public health campaign against smoking, to being affected and marginalised by its implications dredges up issues around the social transformation that involves the active stigmatisation of smokers in public health messaging and processes of subjectification to both public health and cultural discourses about proper, ‘healthy’ living.

The campaign Deborah refers to – an award-winning national anti-tobacco campaign that ran throughout the late 1990s and early 2000s in Australia – involved imagery of disembodied lungs, presented as if in autopsy within the sterile environment of the morgue. Gloved hands then poured a thick, black, oozing liquid said to represent the amount of tar a smoker inhales each year over the disembodied lungs, contributing to conceptualisations of cancer as abject ‘monstrosity’ (Cavanagh, 2017). The equivalence drawn between this bodily desecration and the act of smoking made for a very successful public health campaign, but also for the widespread stigmatisation of smokers, emphasising the need to ethically reorient public cancer discourse (Ehlers & Krupar, 2022).

This stigmatisation led to an uneven distribution of sympathy and blame across different cancer types, causing frustration related to the pressure to ‘perform’ as a ‘deserving’ patient (Chang et al., 2016), and was frequently expressed via a comparison between breast and lung cancer. As Sarah succinctly put it:

When you talk about breasts, people [think], ‘Oh breasts!’ It’s sexy. Lung has a stigma, because most people would associate lung cancer with smokers . . . breast and prostate cancers are sexy. Lung cancer is not classy because you’re a smoker. You smoke, that’s your own fault.

As Sarah further explained, this unequal treatment was seen to be reflected not only in public awareness and profile, but in funding and biomedical attention, too:

. . . When I compared breast cancer with lung cancer, breast cancer has so much more of a profile than lung cancer . . . first of all, lung cancer is the deadliest cancer of all, right, and detection is never, well, is hardly ever picked up in the early stages. It’s very hard to detect, and most patients are detected at a late stage, like myself. So there needs to be more awareness in the community with policymakers. So there’s all this thing about Pink Ribbon Day. Great. All this mammogram, free breast screening every two years. Fantastic. . . . But what about lung? Where’s the screening?

The frustration expressed by Sarah was echoed across the dataset, with much focus on the ‘pink’ marketing of breast cancer campaigns, in opposition to the ‘ugliness’ of disembodied and diseased lungs made prominent by anti-smoking campaigns. As Evelyn expressed:

. . . So personally, I don’t get [understand] people going, ‘Oh, you don’t deserve anything because you’ve lung cancer,’ . . . people don’t donate to lung cancer because we’re not pretty. We’re stinky and tobacco-y. And I remember this wonderful person . . . the nurse . . . And she said, ‘We’ve got to change that image. When you Google lung cancer, I no longer want to see stinky, old, tobacco lungs.’

The visceral language ‘stinky and tobacco-y’ and ‘stinky, old, tobacco lungs’ demonstrates the ways that the personhood of smokers is called into question and made abject. Evelyn’s internalisation of stigma is a visceral shame felt ‘under the skin’ (Kuhn, 1995), resulting in ‘ugly feelings’ (Ngai, 2007) of shame and blame – visually reinforced through anti-smoking campaigns like the one described above, which draws a visual equivalence between the act of smoking and the desecration of a vital organ. The disembodied lungs, viewed within a highly sanitised clinical setting, removes the organs from the body of the smoker and the smoker from the broader social body, dehumanising smokers on both fronts. Public health campaigns that encourage anti-smoking sentiment draw upon the analytic of abjection. One of the consequences of this, as demonstrated above, is a heavy stigma and shame attached to receiving a lung cancer diagnosis. But as we detail in the next section, abjectification was not only done to people living with cancer, it was enacted by them, too.

‘. . . it’s not classy to have lung cancer’: The biopolitical subjects of ‘lifestyle’ in cancer care

‘Lifestyle’ has increasingly been utilised as a mode of biopolitical control in the arena of public health security (Mayes, 2015), encouraging citizens to engage in ‘healthy living’. Such a biopolitics of lifestyle erases structural inequalities by focusing solely on individualism and choice, where the neoliberal state stigmatises illnesses, creating ‘wasted humans’ (Tyler, 2020). This played out across the interviews as participants engaged with the figure of the ‘smoker’ as a failed biopolitical subject, either distancing themselves or blaming themselves for smoking. In both instances, the figure of the smoker was weaponised at the intersection of shame, blame and abjection. The ‘failed’ biopolitical status of the ‘smoker’ was expressed by Anna, who characterised the smoker as an object of disavowal:

I was only talking about the stigma because some people immediately have said, ‘Do you smoke?’ Well, for God’s sake, don’t you think you’d smell it on me, if I smoked or I’d have yellow teeth? You know if someone’s a smoker – Anyway, I just tell them straight away, ‘No.’ One in three women that get lung cancer do not smoke, have never smoked.

The monstrous abjection of cancer (Ehlers & Krupar, 2022) is expressed through Anna’s use of visceral terms. In quick succession, Anna identifies the stigma faced by people with lung cancer, and then reinforces it, highlighting the sensory markers of ‘yellow teeth’ and ‘the smell’, demonstrating an implicit inscription of ‘valueless personhood’ (Skeggs, 2011) to the figure of the smoker. The source of the very frustration that Anna articulates is reinforced in her pointed distancing of her own self from this characterisation.

While some participants like Anna distanced themselves from the figure of the smoker, others like Olivia demonstrated a shameful acceptance of lung cancer as a consequence of smoking:

Interviewer:

Were you surprised when you got the lung diagnosis?

Olivia:

Not really, no. Because I smoked years ago . . . I started smoking I was 17, of course, everybody did. And I would have been early 70s when I gave it up . . . I thought it was strange to get it after I’d given up smoking. . . . Because I gave up they sort of called it a non-smoking one . . . I don’t know. It [smoking] could have caused it, in the end it could not have caused it. Could be all the weed killer I sprayed. . . . I used to go through bottles of it.

Here, Olivia accepts ‘responsibility’ for her lung cancer diagnosis and then immediately defends herself by noting that ‘everybody’ smoked at the time. There is a shift here from individual responsibility (that ‘she’ smoked) to the social level (that ‘everybody’ smoked) that demonstrates a discomfort in being held individually responsible for smoking. Olivia’s shifting of individual blame to a societal level reveals the deeply uncomfortable feelings of shame associated with being a smoker, while simultaneously demonstrating the beginnings of a revolt against the enduring connection between the ‘choice’ of smoking and a subsequent lung cancer diagnosis.

The shame and blame that operates through the biopolitics of ‘lifestyle’ in the context of lung cancer were keenly felt by participants, as was the quick equivalence drawn between experiencing lung cancer and being responsible for its causal origins. Kim described the reactions of some of her acquaintances, friends and family to her lung cancer diagnosis:

Rather than saying, ‘Oh, I’m really sorry to hear you’ve got cancer’, it’s always, nearly always, ‘Did you smoke? Were you a smoker?’ Oh, god. The amount of times I’ve been asked that question. I’m over it. And I always reply, ‘Look, I’m sorry, one in four people who have never smoked get lung cancer’ . . . I feel – I don’t know. Oh well, cranky, angry. I think I feel blamed. I feel guilty because I’ve made some wrong choices in my life.

Kim’s response that ‘Look, I’m sorry, one in four people who have never smoked get lung cancer’ reinforces the moral boundary between smokers and non-smokers. Whilst Kim’s statement might rehabilitate her own standing vis-a-vis social judgement, it further entrenches the marginalisation of ‘the smoker’ as excluded from empathy and concern, demonstrating how stigma can be weaponised in everyday interactions (Addison, 2023) to maintain inequalities. In this way, the disavowal of those living with lung cancer is reinforced by those very same people in response to the broader societal dehumanising of smokers. In the case of the excerpt above, this is accomplished using the embodied signifiers of ‘the smoker’, but also the biomedical language of incidence rates – the one in four women with lung cancer who have never smoked, as mentioned by Kim.

Similarly, Sarah – who was living with both breast cancer and lung cancer – demonstrated an enactment of stigma while simultaneously rebelling against lung cancer’s association with stigma:

I have breast and lung. I met someone that was just an acquaintance, and I told her I had breast cancer, I didn’t tell her I had lung, simply because I think it’s more receptive. People are more receptive of that and more kind of, ‘Oh, all right.’ Lung, they think, ‘What? . . . Lung?’ I mean, yeah, it’s dubious . . . It’s dubious . . . it’s not classy to have lung cancer . . . I couldn’t avoid saying what I had because I was in the Cancer Centre at the hospital and this acquaintance was there for breast reasons, so I told her I had breast cancer. I didn’t tell her I had lung cancer. I didn’t want to go into it. I didn’t want to go into all that stuff to explain to her, ‘It’s lung cancer, but I’m not a smoker, I haven’t been to a mine. It’s part of this mutation and genetic makeup, blah, blah, blah. It’s a molecular thing.’ I don’t want to go through all that. It’s harder to understand. It’s very hard to understand.

Here, Sarah distances herself from the abject figure of the smoker, going so far as to omit her lung cancer diagnosis altogether, disavowing those with lung cancer as something that is ‘dubious’ –associated with smokers and those who have ‘been to a mine’ – and lung cancer itself as something that is ‘not classy’. Sarah’s reflections reveal how stigma is a normalised disavowal of marginalised people (Pemberton et al., 2016) such as miners, and further, a way to preserve power and privilege by keeping those experiencing stigma ‘down’ and ‘away’ (Addison, 2023). At the same time, Sarah’s reference to ‘mutation’ and ‘genetic makeup’ demonstrates an operationalisation of biomedical language in Sarah’s self-understanding of her cancer as a ‘molecular thing’ based on genetics rather than lifestyle. As we will explore in the next section, the example above neatly summarises the stubborn endurance of a biopolitics of lifestyle, choice and blame, even in the face of the uncertain causation of genetic mutation.

The above excerpts demonstrate the complexities of living with lung cancer and undergoing targeted therapies. Despite all participants living with a type of lung cancer that had no aetiological connection to smoking, the biopolitics of lifestyle and blame persisted, resulting in feelings of disavowal and abjection that were both experienced and enacted by the participants. However, the focus on individual choice was also subtly called into question by participants as they came to terms with understanding the uncanniness of the genetic mutations of their lung cancer.

‘. . . the why, for me, has been interesting’: Genetic mutations, uncertain causation and speculative horizons

The association between illness, stigma and shame is intensified in so-called ‘lifestyle’ diseases such as lung cancer. Targeted therapies and the alternative causations they encompass seemingly offer a way to disrupt the enduring association between smoking and lung cancer. In particular, the specific gene mutations that targeted therapies treat demonstrate a certain ‘uncanniness’ of bodily agency in the context of illness, with the potential to unsettle the governmentality and biopolitics that underlie the marginalisation and stigmatisation of those living with lung cancer as abject (see Scambler, 2018; Tyler, 2020). However, even among the 32 participants in this study who were receiving targeted therapies and, thus, could avail themselves of the genetic discourses that predominate in precision oncology (as opposed to causal stories based on exposure or ‘lifestyle’), the experience of stigma from acquaintances, friends and family persisted, resulting in feelings of abjection and disavowal.

Initially, participants spoke of their ‘luck’ at receiving diagnostic testing results confirming a genetic mutation, as described by Sarah:

. . . there was a bit of a jubilation in the air and I thought, ‘What are they happy about?’ Then I realised what it was later, that this means I would receive targeted therapy in the form of tablets . . . which is really good because it means I don’t have to go on chemotherapy, the dreaded bogeyman of cancer. I don’t have to go for chemotherapy. I don’t have to go to the hospital every now and then.

In the excerpt above, the affect of jubilation is initially parsed through a framework of confusion for Sarah, unsure of why their results would be received positively before realising the new treatment options afforded by her tumour’s genetic make-up, demonstrating the ways precision medicine complexifies the already complex experience of receiving cancer care (Day et al., 2017).

Another affect to emerge from precision medicine was one of luck (Broom & Kenny, 2021), as expressed by Irene:

I am good. I’m lucky. Yeah, I’m lucky. I [would] be dead. If I was diagnosed before 2018, I’ll have more side-effect[s], negative side-effects [from chemotherapy]. Yeah. Maybe you’re going to trim the fringe and maybe my hair is falling out, but not there yet. So, I’m lucky.

The benefits afforded by identifying genetic markers extended beyond access to targeted therapies; they also conferred the moral benefit of understanding one’s cancer as ‘a non-smoking one’ (Olivia), in which they could not be ‘blamed’ for their illness:

So he [the oncologist] said it’s not a cancer that you get from smoking. I went, ‘Okay.’ But it was funny, isn’t it, that relief or that people often say, ‘Oh, so you were a smoker?’ That blame. And I’m going, ‘No.’ (Alice)

Alice’s relief at avoiding being ‘blamed’ for her cancer as a result of ‘choosing’ to smoke reinforces the smoker as an object of disavowal. Similarly, despite participants’ lived experience of their lung cancer as a lucky genetic mutation, causal speculations overwhelmingly veered toward the territory of individual blame, as described by Michael:

So, the why question. So the why, for me, has been interesting. I originally started to think, ‘Because I had melanoma, have I got a genetic predisposition? And is that genetic predisposition deterministic?’ . . . I suspect now the epigenetics of it all is probably more important than the straight genetics. And I think the epigenetics are probably, well, clearly more environmentally determined. So my sense is stress has probably been a bigger contributor in causing the epigenetic environment.

Epigenetics – the science of gene expression as influenced by environment – has gained increasing public attention since the early 2000s (Dubois et al., 2019). This social diffusion has been criticised for oversimplifying the science, for promoting hype and for making epigenetics a buzzword (Dubois et al., 2019). At the same time, the popular uptake of epigenetics has advanced narratives of control and empowerment – an antidote to the genetic determinism of traditional ideas about heritability. Michael’s usage of epigenetics in the excerpt above indicates his belief that his environment and stress have been contributing factors to his lung cancer, regardless of any (possible) genetic predisposition. While genetic – as opposed to ‘lifestyle’ – causation has the potential to disrupt a search for ‘blame’, the epigenetic turn here recentres lifestyle as a potent local of causation and blame. Despite knowledge of the unruliness of lung cancer at the genetic level, Michael invokes epigenetics, identifying stress as a contributing factor that may have prompted the expression of a genetic predisposition, and returning blame on to the individual, in this case in the form of self-blame.

The ‘uncanniness’ of genetic causation revealed the uncomfortable agency of illnesses that are outside of people’s individual ‘lifestyle’ control. Nonetheless, it became clear across the interviews that those undergoing targeted therapies still continued the search for ‘blame’. This played out as a speculative horizon of uncertain causation, where, despite knowledge of genetic causation, participants nevertheless speculated and foregrounded ‘lifestyle’ and individual actions as the aetiological pathway of their lung cancer:

I used to do that [work 16-hour days] six days a week and go into the mill on Sundays too. We had an immuniser for treating timber and they’d have to load that and fire it up so it’d be hot for the Monday. . . . My kids got sick of going to that [place] . . . But it would be the only way I could see them. (George)

I suppose you’d think about it [the catalyst for lung cancer] like they’ve just diagnosed guys working in the stone industry, who grind the stone top benches, they can get lung cancer. 90% of them can get lung cancer. Like the asbestos side of things, when they were building the asbestos homes. My dad was in that era. He got asbestosis. So you’ve just got to be careful. (Alba)

As George and Alba’s speculations demonstrate, participants continued to search for causation in the realm of ‘lifestyle’ and in their working environments, despite knowing that such factors were not relevant for the particular genetic mutations they were undergoing treatment for – revealing a deeply ingrained need to ‘blame’. At the same time, George and Alba revealed an implicit knowledge of the transcorporeality of their lungs, enacted through breath, as they reflected on encounters with carcinogens in their daily lives, whether through long working hours at the mill treating timber with an immuniser, or musing on the general risk of lung illnesses such as asbestosis and silicosis in manual labour jobs such as construction and mining. While still enacting a search for blame, Alba and George’s reflections reveal how ‘lifestyle’ factors involving exposure to pollutants operate on a different plane of judgement to ‘decisions’ to smoke that make the figure of ‘the smoker’ in lung cancer an object of disavowal. The anxieties around pollutants articulated by George and Alba demonstrate an awareness of the potential toxicities in collective environments, the unequal exposure to such pollutants along class lines, and the porous boundaries between the external and internal world, parsed through the lungs, which combined create an opening to critique epistemologies of ignorance (Lykke, 2019) that lay blame solely at the level of individual ‘choice’.

The search for ‘lifestyle’ causation and the blame implied therein was similarly reflected by Sarah:

Lung [cancer] has a stigma, because most people would associate lung cancer with smokers or people who have been in the mines or been exposed to asbestos. Maybe the blue collar workers or certain class of people. . . . It’s not classy.

Sarah’s description above demonstrates how ‘mechanisms of stigma can be mobilised within social relations to structure interactions, maintain power structures and reproduce stubborn inequalities between and across sub-populations of vulnerable groups’ (Addison, 2023, p. 310). Smoking’s association with not only lung cancer but a ‘certain class’ of people overlaps with ‘blue collar’ work that exposes those at the frontline of carcinogenic capitalism, whose lungs bear the brunt of our extractivist actions. In the same breath, Sarah disavows not just smoking but also working in a mine and being exposed to asbestos, revealing the ways in which lung illnesses are reified along socioeconomic lines. The disgust demonstrated by Sarah, and the false equivalence drawn between abjection, class and lung cancer are understood as a moral deficit where stigma is weaponised to attribute blame to the figure of the smoker.

From the examples above, we can see that the how and why of lung cancer remained at the forefront of participants’ minds, despite reassurances from medical professionals that the genetic mutations of their lung cancer was a ‘non-smoking one’. Such an enduring focus on ‘lifestyle choice’ in lung cancer stigma, even in the context of precision medicine and innovation ‘at the cutting edge’, demonstrates the need to more closely consider the subtlety of neoliberal biopolitics and its entanglements with carcinogenic capitalism.

Concluding discussion

Lung cancer, as it currently stands, is something of a paradox. Animated by considerable excitement about the possibilities of new therapeutic innovations at the cutting edge of biomedicine, it is also cut through with the cultural legacies of stigma that position the smoker as abject/object despite the alternative, non-smoking aetiological pathways that targeted therapies foreground.

The social and cultural valence of lung cancer emphasises the supremacy of individualised narratives, where illness is seen as directly correlated to lifestyle ‘choice’, contributing to the stubborn endurance of lung cancer stigma. The endurance of stigma and the search for blame in the participants’ occupations or actions demonstrates the persistent assumptions around lung cancer as an illness that is somehow attributable to individual bodily conduct and/or choice, and the explicit and implicit moral evaluations of smokers that circulate therein.

The landscape of lung cancer treatment reveals the endurance of stigma, and the need for broader sociological approaches that tackle stigma at a structural level. This is more pressing than ever in the present moment, as research into lung cancer is demonstrating that it is not only a ‘lifestyle’ disease. Rather lung cancer arises due to varied causalities, and recent studies have identified the contributing effects of environmental pollution (Hill et al., 2023). In low-, middle- and high-income countries, alike, there is a growing number of non-smokers being diagnosed with lung cancer each year (Dubin & Griffin, 2020).

What is needed instead are critical approaches to lung cancer that put the ‘blame’ of so-called ‘lifestyle’ diseases to rest for good. One such critical approach lies in Alaimo’s (2010) concept of transcorporeality which elucidates the porous boundaries between the discrete individual self and the surrounding environment, destabilising many of the taken-for-granted relationships between health and choice, lifestyle and disease, body and environment, and choice and socioeconomic status/environmental context. Lung cancer as a disease disrupts the exchange of oxygenated breath and exhalation, the interface between bodily interior with its surrounds, and the vital necessity of respiration – even in the face of malignancy. While often couched in the highly individualised terms of lifestyle choice and responsibility, lung cancer is fundamentally an embodied form of relationality – an interface not only between bodies and worlds but between materiality, moralities and meaning.

We propose, then, a transcorporeality of breath, a critically feminist approach to understanding the contemporary landscape of cancer and its intersections with ‘carcinogenic capitalism’. As Lykke (2019) argues, dominant Western discourses of cancer are characterised by ‘epistemologies of ignorance’, which ‘refer to epistemologies universalizing certain privileged outlooks, neglecting the possibility of other perspectives’ (p. 110). Such universalising outlooks played out extensively in the omnipresence of the abject figure of ‘the smoker’ against the speculative horizons of uncertain causation in which the how and why of lung cancer remained relegated to the sphere of individual ‘lifestyle’, disavowing the unruly bodily agency of genetic mutation.

The uncanniness of genetic causation, we suggest, was downplayed in favour of conceptualisations of the body as a discrete and bounded entity, even as this contributed to the participants’ own stigmatisation. This reveals a certain neoliberal fantasy of biopolitics, in which death can be kept at bay by ‘living right’ (Donn, 2020). In an era of ‘carcinogenic capitalism’, the subtle and continuing blame on the individual demonstrates a rejection of the carcinogenic effects of poverty and political neglect. Approaching the smoker as object, and as abject, plays into the wider symbolic valence of breath and the lungs as demonstrative of life itself. By insisting on a transcorporeality of breath, the lungs can be reconceptualised as a site of contestation, so that the biopolitics of ‘lifestyle’, the person with lung cancer and the object of ‘the smoker’, alike, can be challenged and restored to a figure worthy of empathy and care.

Utilising lung cancer as an illustrative case, we suggest that the neoliberal biopolitics of lifestyle works to reinforce and reinscribe epistemologies of ignorance that conceptualise the human subject as discretely bound. What this focus on the individual and bounded body elides are the collective atmospheres in which we exist, which are at once universal and situated, stratified along racial and class-based lines. By insisting on a feminist transcorporeality of breath, we emphasise the porous entanglements of our increasingly carcinogenic world. We hope that such an approach destabilises the violence enacted by universalising ideas of discrete individuals’ lifestyle ‘choice’ toward a recognition both of the unruly bodily agency of genetic causation and of the collective carcinogenic conditions of capitalism in which we all must live and breathe, albeit from situated and unequal positions.