Abstract
Ethnographic observations at an early-detection centre for cancer serve as a basis for theorising the spatiality of preventive medicine. Based on insights from both the sociology of health and the sociology of space, the article outlines a re-spatialisation of health by articulating the concept of osmotic-spatiality: spatial-temporal arrangements which transform health into a personal task and an individual achievement, producing the subjectivity of ‘healthy patients’.
Healthy people flee contact with the diseased. This rule applies to almost everyone.
Introduction
Novelist Jerome K Jerome wrote over a century ago that ‘I have never read a patent medicine advertisement without being impelled to the conclusion that I am suffering from the particular disease therein dealt with in its most virulent form’; recounting how he leafed through the pages of medical books in the British Library, Jerome realised that ‘I had walked into that reading-room a happy healthy man. I crawled out a decrepit wreck’ (2012 [1889]: 5, 7). The wide exposure to medical and quasi-medical information, therapies and check-ups, seems to have brought such ‘sickening’ effects to new levels. This article – seeking to probe into these shifting movements between health and illness – focuses on some of the socio-spatial practices of preventive medicine, defined here as the testing of an asymptomatic (nominally ‘healthy’) population in order to classify people into those who are likely and less likely to have or develop a disease (Armstrong and Eborall, 2012: 162). 1
A substantial body of research indicates that the risk-oriented approach of preventive medicine changes both the objective status and subjective experience of health (Aronowitz, 2009; Drew and Schoenberg, 2011). Greaves (2000) suggests that preventive medicine creates a new social category of partial patients: an ambiguous and stressful category of people who do not feel ill and yet are medically informed about an impending illness that might strike them due to their lifestyle, personal or family histories, or some other risk-indicators generated by the calibrated results of their screening tests (also see Ogden [1995] on the ‘risky self’). Kreiner and Hunt (2014) find that the practices of preventive medicine are turning healthy people to chronic patients, as for example when some medically defined high levels of blood pressure or cholesterol are experienced not as risk factors for developing cardiovascular disease but as an illness in and of itself. Risk has become a ‘condition to be treated’ and makes it difficult ‘to maintain an identity as a healthy person’ (Gillespie, 2011: 200).
This article looks at one locale where the operations of preventive medicine take place. The argument developed in the article is that while the contemporary experience of health undergoes substantial transformations, the practices of preventive medicine maintain and uphold, rather than abruptly subvert, the principled distinction between health and illness. However while health is vigorously protected as an ideal, the routines of preventive medicine destabilise the experience of feeling healthy. Health becomes a task in a perpetual process which makes its attainment a goal which is increasingly harder, if not impossible, to achieve. The article offers the notion of ‘healthy patients’ as a way of conceptualising the effects of this process.
The article is based on ethnographic observations at an early-detection centre which specialises in detecting and predicting the likelihood of various types of cancer (hereinafter the Centre). 2 It is premised upon the new materialist sociology which is concerned with health as a ‘relational achievement’ (Duff, 2014: 185); the idea that not only illness but also health has to be assembled (Fox, 2015). The methodology which is used here relies on a conversation between the sociology of health and the sociology of space, seeking to outline the re-spatialisation of health. Preventive medicine – not unlike other therapeutic milieus – is based on ‘repeated, rhythmic medical intervention’; likewise, it constitutes a ‘spatiotemporal rhythm of medical treatment’ in relation to other ‘spatiotemporal orders – like work, school, family and recreation’ (Wolf-Meyer, 2014: 145, 155). This study sketches some of the spatio-temporal mechanics and dynamics that enable the practices of preventive medicine as a social framework of action. It theorises them as osmotic-spatiality. The notion borrows from the terminology of cell biology and physical chemistry where osmosis is commonly defined as ‘the diffusion of fluids through membranes or porous partitions’. 3 This biological topography of identifying two neighbouring regions which are separated by a porous boundary is applied here to the construction of a boundary between a region of health and a region of precarious, or ‘lesser’, health and to the movements across it. It concludes that osmotic-spatiality produces a subjectivity of ‘healthy-patients’.
The spatialisation of illness: Background
The sociologies of health and space are not foreign to each other. Accounting for the trajectory of urban hygiene and public health policies in the eighteenth century, Foucault articulated two socio-spatial ideal-types: bounded enclosures which cluster and separate healthy and ill populations from each other, and grid-like partitioning which subjects the population as a whole to monitored surveillance and particularised classifications of health and illness. Concretely, Foucault invoked an opposition between the treatment of the leper and the treatment of the plague. The leper gave rise to practices of exile enclosure while the plague had been met with a (utopian) regime of a perfectly governed space (Foucault, 1977). The theoretical implication of articulating these two ideal-typical spatial modalities was that spatial arrangements embody distinct epistemic logics and different technologies of power. Epistemic changes occur somewhere and new spatial arrangements produce epistemic effects (Foucault, 1973, 1977).
Erwin H Ackerknecht’s (1967) pathbreaking work Medicine at the Paris Hospital, 1794–1848 charted the history of modern medicine in terms of its shifting primary locus: from ‘library medicine’ to ‘bedside medicine’ and later on to the ‘hospital medicine’ which has become dominant during the twentieth century. David Armstrong, following Foucault and Ackerknecht, suggested that ‘the tactics of Hospital Medicine have been those of exile and enclosure’ (1995: 400). The hospital is ‘the centre of health care activity’ which, in turn, orients itself to finding the ill-legion within the ‘three-dimensional corporal volume of the sick patient’ (1995: 400–401, 395).
Armstrong has been a pioneer in exploring the new spatialisation of illness that preventive medicine announces. Armstrong conceptualises the rise of a ‘surveillance medicine’ which is based on ‘the targeting of everyone’ (1995: 395). Tracing some of the origins of surveillance medicine to the development of broad medical surveys which ‘classify bodies on a continuum’, Armstrong writes that ‘the survey revealed the ubiquity of illness, that health was simply a precarious state’ (1995: 397, 395). Surveillance medicine leaves the hospital and penetrates into ‘the wider population’ (1995: 398), dissolving or at least blurring the boundary between health and illness. Most crucially, surveillance medicine replaces the bodily-focus on symptoms and signs with a general search for and establishment of risk factors and this, in turn, marks a shift away from the body towards ‘a space of future illness’ (1995: 400); an ‘extra corporal space’ (1995: 401) or post-corporal space, consisting of matters such as lifestyle where future illnesses may lie. The main spatial shift that Armstrong identifies with the rise of surveillance medicine is from ‘a three-dimensional body as the locus of illness to the four-dimensional space of the time-community’ (1995: 403); an added ‘temporal space’ which is a function of the interest of surveillance medicine in the life history of illness.
Armstrong’s socio-spatial model is detached from any specific bounded area when it comes to specifying the loci of healthcare away from the previous attachment to body, bed and hospital. To the question of where precisely does the locus of surveillance medicine reside, Armstrong offers the claim that the new space of illness is the ‘community’ or ‘population space’: risks to health that lie in and among buildings and homes and bodies who are more or less proximate to each other and need to be monitored ‘to guard against transmission of contagious diseases’ (1995: 401). While this articulation may accurately capture the concerns of public health with epidemics and contagious diseases, it seems to fall short of addressing current concerns with illnesses like cancer or cardiovascular conditions that must also be detected early and computed along scales of risk. While Armstrong associates hospital medicine with the quite straightforward spatial practices of exile and enclosure, the tactics of surveillance medicine lack spatial specificity. Armstrong in fact concludes that surveillance medicine is everywhere, and this insight has a strong appeal as long as ‘surveillance medicine’ applies to the new public health regimes. Yet we know that as a matter of course many of the operations of surveillance medicine – in its deployment as the paradigmatic logic of preventive medicine – routinely take place in early-detection centres and screening and routine-check-up facilities, whether within hospitals or as exclusively designated preventive clinics.
For example, Preventicum is the commercial name of a London-based centre of preventive medicine. On its website it promises prospective clients a ‘six star luxury clinic’: ‘At Preventicum you will have your own private room for the duration of your Check-Up. You will find everything you need to stay in contact with your office or relax: telephone, PC with internet access, satellite television and refreshments.’ The screening tests and medical check-ups in Preventicum are designed to: … evaluate key risk factors and develop a preventive strategy specifically tailored to your lifestyle. Our experienced doctors will interpret all examination results during your visit to the clinic. Any further tests or treatment will be arranged quickly and conveniently thanks to our links with a large network of specialists. Your results, including your MRI images will be available on the day of your Check-Up.
4
Preventicum serves high-end clientele that can afford to pay its expensive fees. It is exceptional in terms of its exclusivity and yet for the purposes of this article – which does not focus on this specific facility – the commercial label of ‘Preventicum’ and the type of services it offers seem to aptly represent an ideal-type of the facilities which are of concern in this article. Similar preventive services – in private clinics, public hospitals, community health centres and numerous other types of medical facilities – are now routinely offered to an increasingly growing segment of the world’s population. As much as hospitals’ wards are the quintessential locale of hospital-medicine so is the ‘Preventicum’ the location of preventive medicine. The research site in this study, just like Preventicum, will be thought of in this study as foretelling the re-spatialisation of health, not of illness.
However, this by no means suggests that early-detection centres exhaust the question of ‘where is preventive medicine?’ or settle the problem of ‘how does preventive medicine produce the subjectivity of healthy-patients?’ While the early detection Centre on which this study focuses is an important locus of preventive operations, the forthcoming analysis is not restricted to the spatial mapping of its confines. The study subscribes to a relational approach which holds that there is no such thing as space outside of the processes that define it, and that these processes ‘do not occur in space but define their own spatial frame’ (Harvey, 2006: 128). The emphasis here is on the ‘relational ordering’ and placing of moving and circulating bodies and objects (Löw, 2008: 35). In this approach bodily movements such as walking establish ‘relations among differentiated positions’ to enact urban space in ways that go beyond the strategic production of ordered spaces (De Certeau, 1984: 98). Tourists who queue to enter architectural landmarks – also spending their time taking photos of themselves and of the ‘site’ – actively participate in the production of a ‘landmark space’: ‘in perceiving and placing’, writes Löw, ‘we create spaces’ (2006: 128). Likewise, this study focuses on material circulations and bodily placings that extend beyond the physical confines of the Centre.
One of the strengths of the relational approach is that it also provides a methodology for exploring how the bodily experience of placing and being placed also effects subjectivity. The city walker produces urban space and at the same time becomes a flaneur or an urbanite or one with a certain sense of belonging; in queuing and taking photos, one gains the experience of being a tourist, of having really been ‘there’. 5 The processes of relational ordering which is of our concern here simultaneously produce the space of preventive medicine and the distinct subjectivity of what is here referred to as healthy-patients. The relational approach, therefore, does not only treat the production of space as the ‘end-point of social explanation’ but also explores how spatial arrangements participate in the construction of the social (Massey, 1994: 254). The spatial deployment of dynamically related bodies, instruments and medical tests is a constitutive dimension of preventive medicine and its healthy-patients’ subjectivity.
The study
The study is based on a year of multiple observations in an early-detection centre which publicises its specialty in identifying and predicting 11 different types of cancer (hereinafter the Centre). The Centre is located in a major urban hospital. Although the hospital is a public institution and operates as part of the country’s public-health system, it also hosts the Centre which operates on a for-profit basis. The latter relies on methods of commercial marketing that target both individuals and employers who are interested in providing workplace benefits to their employees above and beyond their universal public health insurance. At the time of the study, the Centre also began to enhance its efforts to attract people from foreign countries, a phenomenon largely known as medical tourism, which now begins to include people who seek the screenings and check-ups of preventive medicine.
On average, the Centre admits 12–20 people daily. Prior to arrival, each person receives a comprehensive medical history questionnaire to be filled in advance and returned upon her or his designated day for the check-ups. In addition to its screening and medical examination paid services, the Centre also operates as a medical research centre. Each individual who subscribes to medical tests is asked to sign consent forms that would allow the Centre to extract DNA samples from her or his blood. Part of the Centre’s financial sustainability is therefore derived from it ability to receive scientific research grants for collecting data and studying ‘healthy people’, as well as for studying several types of genetic mutations and their correlation with various types of benign and malignant tumours.
The Centre has its own Molecular laboratory which carries out genetic tests for APC variants and levels of CD24. 6 It also stores the blood samples of all clients whose consent has been obtained for using their blood tests to generate DNA samples for purposes of research. The Centre employs four to five laboratory technicians and researchers. The Centre relies on the hospital’s laboratory for the routine blood tests of all its clients and on outsourced laboratories for carrying out other genetic tests, mainly for BRCA1 and BRCA2, in cases it has identified as high risk on the basis of family history.
The medical staff at the Centre include specialists in internal medicine, a surgeon, a dermatologist, a urologist, a gastroenterologist and an oral and maxillofacial specialist. In their physical examinations of the clients’ body organs and tissues, the physicians draw on the medical questionnaires, on-site interviews and the conventional medical gaze and touch in order to assess risks of cancer. The Centre also employs several administrators, a dietician and two paramedics (designated ‘research coordinators’) who perform both client-oriented and research-oriented tasks. It also retains the services of an external genetic expert whose weekly advisory-visit is attended by most of the medical and laboratory staff. The Centre is headed by a Scientific Director and an Administrative Manager.
Arriving in the early morning on a designated day, people hand over their medical questionnaires, previously filled in at home, to an administrator. They are assigned a number and several stickers with their identifying details that will be attached to all their medical forms, tests and blood samples. They then proceed to give their blood samples and to sign consent forms. After a light breakfast, they are interviewed about their health questionnaires and are then called upon, one by one, to move from one check-up room to another (labelled ‘stations’), each occupied by a physician with a particular specialty. The circulation among stations is completed by meeting a dietician and by having a summary interview. In between, they may also be sent to additional screenings in the hospital, or referred to future tests in other medical facilities. Some people will also have their blood samples sent to genetic laboratories for additional checks.
The logic of enquiry in this study is that in order to understand the Centre as a relational space which performs and sustains the practices of preventive medicine, it is necessary to trace the circulation of specialists, consultants, blood samples, medical questionnaires and check-up tests and results which participate in its assembly. The clients of the Centre – conventionally referred to as ‘patients’ – are not external to the assembly of this social world. The circulation of clients as they move between specialists and screening facilities is therefore a key element in this study. While some informal exchanges with clients are included in this study, it is primarily based on interviews with staff members and on observations obtained during regular attendance at administrative discussions, genetic consultancy meetings and laboratory discussion sessions. Observations also included visits to affiliated hospital units, wards and laboratories. However this is not a study of subjects and their thoughts and feelings, but rather a study of the components involved in the spatial construction of an epistemic universe, namely preventive medicine.
Healthy patients
The sociological study of preventive medicine has foundations in and an orientation towards eroding the binary distinction between health and illness; and it theorises preventive medicine’s role in creating a new category of patients who are suspended somewhere between feeling healthy and ill. However, in practice, the maintenance of the principled distinction between health and illness is crucial for the operations of the facilities specialising in preventive medicine. The staff are highly aware that no one comes to the Centre hoping to be diagnosed with cancer or with being classified as being at high-risk for it. As a rule people want to be healthy and are relieved to be told they are. Moreover, one of the tasks of the Centre is to collect ‘healthy blood’ samples, thereby actively participating in perpetuating the category of health. As a principle then, the Centre treats healthy people and hence I refer to them as clients, rather than patients, throughout this article.
Concretely, the staff of the Centre make considerable efforts to affirm the healthy status of its clients. First and foremost, the Centre strives to create a ‘healthy place’ for its clients and to minimise their interaction with ‘real’ patients. The Centre is located on the 33rd floor of a hospital tower which only has 10 floors. In fact it is a ‘hidden’ floor, tucked between the second and third floors of the building. There are six elevators in the lobby. Only two of them reach that floor. For all visible purposes it is a non-existent floor and the hospital’s elevators do not have a designated button for them. One has to be informed in advance of how to reach this floor and to press the number 33 on a keyboard outside the elevator. This non-existent ‘33rd’ floor also hosts the hospital’s public relations unit and a ‘maternity club’ for women who gave birth in the hospital’s maternity ward. This is a floor of and for healthy people, architecturally segregated from the ill, and guarded against accidental intrusion.
Parking is an issue. As part of its services the Centre offers discounted parking to its clients (at the time of study it was working towards obtaining free parking). Yet in order to enjoy the discount the parking ticket must be validated in an office located in the hospital’s main lobby. ‘It is not the bureaucracy and the queue which is the problem’, explains the human resources consultant of the Centre, ‘but standing in line down there. Suddenly you feel you are in a hospital.’ The solution is that one of the Centre’s administrators collects the clients’ parking tickets and carries them to validate downstairs.
The effort to protect the integrity of clients from the incursions of illness also includes the question of how to name them. Unlike other institutional settings where the designation of people as customers has become common, it is still less acceptable when it comes to health-related issues. An administrator in the Centre explains that ‘they are not customers because it is a hospital after all, but they are not patients either because they are not ill’. Speaking at a weekly meeting of the Centre’s laboratory staff, a technician presents preliminary findings of a study and refers to ‘the blood samples of patients’. The Scientific Director of the Centre interrupts: ‘They are not patients, but participants in the study, or examinees, or those who are being treated.’ But the designation of ‘patients’ persists, commonly used by the staff in their private conversations. At a weekly staff meeting an administrator reports that some clients complain about having to undress too many times, as they move between different physicians in different rooms. One of the attendant physicians suggests to provide them with bathrobes. ‘Out of the question’, says the Scientific Director, ‘this will make them feel they as if they are hospital patients.’
Often the staff talk about the Centre’s ‘recruits’, because an important part of the administrators’ work is to enrol new clients. To that end, they ask each new recruit to refer them to other prospective ones and assemble lists of names and phone numbers on a snowball basis. Added to other data sources that they assemble, some administrators spend the after-visit hours in the Centre calling people and informing them of the life-saving benefits of early detection. The Centre’s paramedics also engage in what they refer to as ‘enrolment’: spending time convincing cancer patients in the Oncology Ward of the hospital to volunteer for comparative research projects where their blood is compared to that of ‘healthy patients’. The designation ‘recruits’ therefore simultaneously applies to healthy and ill patients – blurring the distinction between health and illness – however only at the backstage of the staff’s operations.
So the Centre is a place for the healthy and there are efforts to preserve the status of its clients as healthy or at least not ill; and yet the prospects of illness are all around. There is a poster on the wall: ‘It will not go away if you just disobey’. Several brochures lie on a counter next to it, explaining the risks of several types of cancer and recommending various preventive measures and ‘regimes of detection’. The poster is visible to all those who wait their turn to have their blood taken early in the morning or later, when the clients are offered a light breakfast to end the 12 hours’ mandatory fast they had to observe ahead of the blood test. A client stares at the poster; it is the third year that he and his wife have come for the check-ups at the Centre. ‘For our peace of mind’, he says, ‘so we shall have another peaceful year.’ The other responds: ‘Just let this day pass, I want to know I am healthy and God forbid that I end up being a patient.’
Leaving the premises of health
However judicious the effort to protect the integrity of the healthy, it is technically impossible. Most of the physicians employed by the Centre are also employed by the hospital, assigned to regular wards, and work at the Centre in addition to their regular positions. Most of these medical specialists arrive at the Centre on designated hours and rotate back to their respective wards when their shift ends. It is not rare for clients at the Centre to wait for a physician who just left ‘back to the ward’ and is asked to return, or for a specialist who is late because hospital duties keeps her occupied. The physicians, therefore, constantly cross the seemingly porous boundary between the domain of the healthy and the domain of the ill.
The administrators of the Centre also routinely serve the clients as envoys and escorts across the lines, because the Centre is almost entirely dependent on the instruments and screening technologies of the hospital. In the case of female examinees, a routine part of the check-up process includes being sent to mammography screening for breast cancer and for PAP smear for cervical cancer; these check-ups are carried out in the hospital Gynaecology Ward. At some point during their rotation among physicians and tests in different rooms of the Centre, each female client – escorted by an administrator – leaves the premises of the Centre and takes the elevator to another floor, where they walk a long corridor, and eventually reach the Ultra-Sound Unit of the Gynaecology Ward’s Centre for Women Health/Institute for the Study of Fertility.
The escort enters the staff room and assigns the client and her forms to one of the nurses. ‘They do not like us here’, she says, ‘we disrupt their queuing routine. We have many women today in the Centre and it creates a lot of pressure here. But we must rely on a physician for performing a vaginal examination because we do not have a room with a suitable chair back up there.’ The escort-administrator then asks the client to take a seat among other waiting females and returns to her position at the reception desk on the ‘33rd’ floor.
In a significant number of cases, the physicians who perform the physical examinations and review the medical records and family histories of clients decide to refer a client to an additional ultra-sound or CT screening in the hospital. In such cases as well, the client is escorted by an administrator who ushers them through the hospital corridors and transfers both their body and accompanying forms to a person in charge at the screening facility. Then the client is left on their own, waiting to be summoned by a receptionist. Many clients express unease about this placing arrangement, which they feel compromises their healthy status. One client speaks about being ‘out of place’ and another loudly complains about ‘having to sit together with people with hospital robes’. One client wrote a letter to the Centre’s Director, expressing his reservations: I waited more than half hour in line for ultra-sound and was sitting next to patients who just came out of surgery or recovery rooms. The nurse told me that usually the situation is even worse. I therefore recommend that in the future you will consider sending people to their national insurance health clinics or refer them through their private insurance to other appropriate facilities.
In late modernity ‘death presides over life’ and ‘fighting the causes of dying turns into the meaning of life’ (Bauman, 1992: 140). Others point out that ‘wellness has become a moral demand’ (Cederstrom and Spicer, 2015: 3) and that the imperative to be proactive about death-threatening diseases draws on cultural-political processes of responsibilisation: the expectation that individuals will self-manage life’s risks and uncertainties (Beck, 2007; Lemke, 2001; Rose, 2006; Shamir, 2008; Turner, 2009). Armstrong, theorising the rise of surveillance medicine, suggests that it strategically works by way of delegating ‘responsibility for surveillance to patients themselves’ (1995: 399) and Howson, studying screening for cervical cancer, similarly finds that it is ‘embedded within a moral framework of responsibility and obligation’ (1999: 402). All in all, the responsibilisation thesis therefore posits illness as first and foremost a personal failure to lead a healthy life in general and to succumb to a variety of early detection procedures in particular.
Yet the responsibilisation of people to enrol for check-ups is not a straightforward matter. Beyond structural dimensions such as access to health services and the availability of resources, people may be averse to screening for fear of what could be found; people who feel healthy do not necessarily rush to be proven wrong. They certainly do not want to be mixed with ill people or to be treated as hospital patients. And when they are subjected to check-ups they want to ‘pass’ the tests; they hope to get a clearance and to receive a health certificate of sorts. Hence the clients of the Centre do not voluntarily subscribe to being thrown out of their healthy subjectivity even when they accept the moral and practical imperative for undergoing tests.
The Centre must operate prudently: dependent for its commercial viability upon the enrolment of clients and their subscription to repeat visits, it markets its services as life-saving measures for healthy people. It promises better health, not a surrender to a precarious one. One preventive facility in Sydney, for example, therefore labels itself as providing ‘wellness medicine’: ‘Imagine knowing, not just assuming, you are healthy’. 7 This type of responsibilisation, in other words, defends the ideal of health even as it undermines it as a condition; and if illness is a failure, health is prescribed as an achievement.
Still, more and less prosaic routines constantly challenge any strict separation between health and illness. The Centre has a small kitchenette that is intended for use by both staff members and clients. It has a coffee machine, a refrigerator and a counter which daily offers fresh yogurt, fruit and an assortment of sandwiches. Half of the sandwiches are provided by a brand-name bakery. The rest are provided by the hospital’s general kitchen. Having breakfast at the Centre, clients have a taste of both. It is a small anecdote, of course, but added to other such hybrid settings and situations which the subscribers to early-detection practices routinely encounter, it may be telling something interesting about the porousness of the boundary separating health and illness: the boundary itself is intact as far as imaginary regions of health and illness are upheld and maintained, and yet at the same time constant processes of osmotic diffusion are at play, incrementally drawing clients into a new universe of experience and subjectivity.
Not all clients are sent for further screening in the hospital during the check-up day they spend at the Centre. The question of how and where to further refer clients for ultra-sound and CT is debated among the medical staff. Some physicians at the Centre think that it is their duty as preventive caretakers to refer people to on-site tests whenever they suspect something that could be interpreted as a symptom of illness. Others point out the pressure it puts on hospital resources and channel clients to what is referred to as the ‘community’. The ‘community’ in this context refers to tests and screenings that are provided upon referral by the public health system (or insurance programme) in one’s local health-services clinic or an affiliated facility.
In referring clients to the ‘community’, the Centre – already implicating clients in complicated relations of boundary-crossing with the hospital in which it is situated – spatially extends itself to other medical centres of evaluation and calculation. While the connections between the Centre and the hospital’s laboratories and screening facilities already represent a relational extension, the deployment of clients to the ‘community’ seems to further compromise their original nominally healthy status.
Another occasional extension of the nominally healthy body to locations further away from the Centre is realised when a client is advised to undergo further genetic testing that the Centre’s laboratory is not equipped to perform. One of the Centre’s physicians, together with a paramedic, routinely go over all of the clients’ medical questionnaires and search for suspected family histories of cancer, mainly relying on the Amsterdam criteria. 8 A list of clients with potential higher-risk is assembled and presented to the Centre’s genetic consultant at a weekly genetic meeting. Three types of genetic testing are typically on offer: BRCA1 and BRCA2 genetic testing (mutations that may increase the risk of breast cancer), several genes whose mutation is associated with the Lynch Syndrome (HNPCC, colorectal cancer) and P53 mutation testing (TP53 is a tumour suppressor gene whose mutation is associated with breast, bladder and ovarian cancer). Once the genetic consultant determines that any of these tests may be necessary, the DNA of the respective client is sent – for an additional cost – to genetic laboratories specialising in undertaking such tests.
So clients, testing facilities, forms and blood samples travel across multiple destinations, constituting what Mol and Law (1994) consider as a sociality that performs itself through network-spatiality. The social, they write, exists through various spatial types. Regions are one such type, ‘in which objects are clustered together and boundaries are drawn around each cluster’, thereby enabling distinctions of difference such as high/low, healthy/ill, rich/poor, or any other difference that may be thereby produced and bounded. A network, on the other hand, is a spatialised sociality that transcends boundaries, one ‘in which distance is a function of the relations between the elements and distance a matter of relational variety’ (1994: 643). However the present analysis suggests that by operating by means of network-spatiality the practices of early detection do not necessarily erode the ‘regions’ of illness and health; preventive medicine contains both types: it maintains the region of health while operating through networks that re-spatialise it.
The circulation of blood
The first thing all clients must do upon arrival at the Centre in the early hours of the morning – after a 12-hour fast – is to undergo a blood test. Just seconds before inserting the needle in their vein, a paramedic in charge gives the clients what she refers to as ‘the regular speech’, spreads out a few pages of a consent form, and points at the blank spaces for their signatures. Clients are formally presented with several options: using their blood sample for the genetic testing of APC (a tumour suppressor gene whose mutation is associated with colon cancer), using their blood for genetic research, or allowing their blood samples to be used in medical studies in general. Then they are also asked to give their consent for keeping an identifiable sample of their DNA. The general message to all clients is that it is best for purposes of research and at least indirectly for their own wellbeing to agree that their blood sample will be identifiable. Refusals are extremely rare, and one such case will be presented below.
The person in charge of blood-taking is not a certified nurse. Her title is ‘Research-Coordinator’ and she has undergone a short phlebotomy course. The clients are not fully aware of this fact because the sign on the door says: ‘Nurse Room’ and the paramedic is wearing a white robe which she would remove right after the morning’s procedure, when she will attend to other matters at the Centre such as interviewing clients about their medical histories. She will put it on again upon going up to the Oncology Ward to enrol cancer patients who will consent to provide blood samples for purposes of comparisons with ‘healthy blood’. The research-coordinator-qua-recruiter-nurse embodies the dual function of the Centre: at frontstage, it is a preventive-medicine facility which enrols healthy-patients for routine check-ups. At backstage, it is a research centre that relies on the enrolment of such clients in order to create a bank of ‘healthy blood samples’, a product which is in high demand among other medical research centres (especially ones who are developing bio-markers) and among pharmaceutical companies which are in the business of developing new drugs. It is this bank, moreover, that serves the Centre as a basis for successful application for research grants. In its marketing brochure, the Centre ties clinical research to preventive medicine, counting it among the ‘five channels of action to fight cancer’: the involvement of the Centre with international research teams, it suggests, is geared towards ‘finding a clinical solution for preventing cancer’.
The moment of taking blood is dramatic; the body becomes multiple without losing its integrity. In her hospital ethnography Annemarie Mol (2002) noted how the ‘same’ disease is analysed, represented, reported upon and defined by different medical procedures and protocols. ‘In practice the body and its diseases are more than one, but this does not mean that they are being fragmented into many’ (2002: viii); rather, the assembly of disease as a more or less stable ontology holds both the plural and the singular – ‘the body multiple’ – through tactics of coordination which are based on the circulation of forms, representations and conversations among all the participants. At this dramatic moment the research-coordinator inserts a needle into the vein of the examinee and extracts blood which she divides among six test-tubes. One is for reserve. Three test-tubes are sent through a shoot-elevator directly from the ‘Nurse Room’ to the hospital’s main laboratory for general haematology. The results of this blood test should arrive in the early afternoon of the same day, but they often return later, after the clients have already left the Centre. Two test-tubes are for genetic testing and research and are destined for the Centre’s own ‘molecular biology laboratory’. These test-tubes are put aside until noon, when either a research-coordinator takes them down to the laboratory or one of the laboratory technicians comes up to collect them. There each blood sample is tested for APC variants and CD24 levels and each, upon meeting some established criteria, is classified as a ‘healthy sample’ and registered as such in a computerised database, matching each sample with its identifiable consenting donor.
Each human recruit, then, is transformed into five separate blood test-tubes with two separate trajectories: one set circulates through the hospital’s laboratory, where the samples of the clients are tested alongside the hospital’s patients. Another set is kept in the Centre’s molecular laboratory, from where it may shipped to other genetic laboratories and other research facilities.
The molecular laboratory is located two floors beneath the Centre. The laboratory is large, consisting of a main open work area and two adjunct offices where five to six laboratory researchers and technicians are at work. One of them has the exclusive task of treating the blood samples that arrive daily from the Centre upstairs. One sample is kept for the DNA bank and is referred to in the laboratory as belonging to ‘healthy patients’. The other sample is used to examine the APC gene whose mutation may increase the risk of colon cancer. Two of the physicians in the Centre have grave doubts about the merit of this test. ‘APC is not worth anything. There are studies that show it’, says one of them; ‘honestly APC is not worth much’, confirms another, ‘it’s really all about the creation of a DNA bank down there … and besides, even if you know about a mutation there is nothing to actually do about it … well the only thing to do is to start a detection regime of colonoscopy at the age of 40 rather than at the age of 50’. Still, once included in the reports and letters that clients receive about their state of health, APC testing plays its role in transporting clients to the extended scope of health-risks they are facing.
In fact the laboratory is a prime site where the boundary of the ideally protected regions of health and illness become readily porous. Things get complicated at the laboratory because it is its task to classify and store healthy blood samples. Not all clients – although they are seldom aware of it – are considered ‘healthy’ for purposes of research. The senior molecular laboratory’s researcher explains her view of the matter: We compare levels of CD24 in ill and healthy blood. But what is ill and what is healthy? Many things may push the levels up … and healthy at the age of 50 is already not so healthy because there are all kinds of protein changes. So I limit the sample of healthy blood to people between the age of 20 and 50 years old. When we needed to enrol 700 blood samples for a European consortium I, without consulting the Medical Director, and this is my thing, decided that whoever has high cholesterol or takes blood pressure pills is not healthy … it is all about haematological research. … So I would also not agree to include someone who was ill in the past.
So some blood samples do not qualify to make the trip to other ‘healthy’ DNA banks. There are several different criteria, depending on the type of study, to decide who is healthy. Another study undertaken in the Centre defines healthy as subjects who attend the Centre for ‘routine early detection cancer check-ups’ between the ages of 40 and 80 years old, excluding those who receive steroids or have infections, as well as women undergoing fertility treatment or who are pregnant. For other purposes the minimum age is 18, with no upper limit. One of the research-coordinators says that ‘the Centre keeps changing the definition of health according to what it needs in respect to changing research criteria’. At the laboratory health is a constantly shifting category. A paramedic also offers her view on health; she has no hesitations saying that ‘the people who come here are actually only healthy for the time being, they are “so-called” healthy’. Her view is shared by others at the Centre and generates a somewhat amused colloquy term among the staff; they often refer to clients as ‘healthy-patients’; and it seems an apt title for this spatial process whereby the achievement of health becomes a task and a burden.
Spatial-temporal extensions: Waiting for results
Whether the client arrives at the Centre for the first time or frequents it on a yearly basis, the comprehensive early detection of cancer tests are not restricted to a single-day-single-location in which one’s health may only be said to be tentatively suspended. The movements and transports from the Centre to other laboratories and screening facilities also have a temporal dimension. By the end of the day of check-up the clients leave the Centre expecting to be notified of the results; and this expectation effectively entails a change in their status. The clients may still not be aware of it, but at the end of the process no one will receive a full health certificate.
In principle, the results of the blood tests that had been sent for ordinary haematology in the hospital’s laboratory are received at the Centre within a few hours. Yet unless something extraordinary is detected, these results will be added to the client’s medical record and will wait there for the results of other tests. Similarly, the results of ultra-sound and CT screenings in the hospital will arrive at the Centre within a day or two and will also be added to the record and await the results of other tests. When a client is referred to the ‘community’ for further screenings, on the other hand, the process becomes entirely open-ended: the client may or may not undertake the additional test or may postpone undertaking it. In this latter case, such results will not become part of the ‘summary letter’ that is assembled at the Centre and will be sent to the clients within three to four weeks.
Test results are a material matter. They are generated in the form of colourful indicators of low and high risk, in the form of x-ray, ultra-sound, CT and MRI digital images, numeric scales, textual messages and summaries, and hand-written notes on one’s medical record or survey. These results travel among various locations, transported as forms to be filled from the Centre to laboratories and screening facilities and return to the Centre either electronically or on printed paper forms. All these results must be collected and assembled, and eventually put together in summary letters. An administrator is tasked with printing these letters and with mailing them to the awaiting clients.
There are various standardised forms of a summary letter, mainly depending on whether a client tested positive or negative to the APC genetic test. When a person is found to carry one of two types of APC genetic mutation, the letter explains their statistical probability to be at higher risk of colon cancer, and depending on the particular type of mutation advises them to undertake a colonoscopy check-up either once in five years or once in three years after the age of 40. The typical summary letter to clients who have not been genetically singled out as higher risk includes a brief description of each physician’s findings and recommendations (e.g. a follow-up biopsy of a suspicious spot on the body), the blood test results and, when applicable, the results of any follow-up ultra-sound or CT tests. Almost all clients are advised to perform some further check-ups, mainly some specific CT tests, and practically all clients are strongly advised to succumb to periodic colonoscopy and gastroscopy tests. The summary letter also advises all clients to take preventive measures such as minimising exposure to direct sunlight, to obey the dietary instructions they received at the Centre and to exercise on a regular basis. All clients are encouraged to turn their visit to the Centre into part of their responsible self-care preventive behaviour by returning to the Centre on a yearly or a bi-yearly basis. The summary letter, in other words, does not end the process of engaging with preventive medicine but in fact opens up new possibilities for further spatial and temporal extensions.
Timmermans and Buchbinder (2010) held observations at a genetic clinic where the diagnostic uncertainties of high-risk newborns were negotiated between parents and health professionals. Accounting for the sometimes long wait for conclusive medical results and determinations, they offer the notion of ‘patients-in-waiting’ as a way of accounting for a precarious status of being in-between health and illness. They conclude that ‘patients-in-waiting will likely multiply with the normalisation of bio-markers, new technologies such as full body scans, and patient activism around specific categories’ (2010: 420). In fact waiting for results of medical checks has become a pervasive feature of everyday life and the clients who undergo the early-detection check-ups at the Centre are no exception. This period of waiting becomes a temporal mode of suspension that somewhat transforms those in wait into being only provisionally healthy. The crucial feature of this suspension is that it does not mark any abrupt departure from being healthy but rather works by way of a transformative process of diffusion. One begins with waiting for results that may arrive on the same day, and then for results that may take a couple of days to arrive, and then referred to further check-ups whose date has not yet been established. Waiting for results often becomes a prolonged process which eventually may lead to a state of perpetual wait. Waiting for results, waiting for a scheduled test, or simply anticipating a day of check-ups that would end with waiting for further results incrementally become a way of life. Health, as has already been suggested throughout this study of the spatio-temporality of early detection tests, becomes a matter of achievement, something to strive for and look forward to.
Health becomes a task and an achievement through its re-spatialisation. The healthy-patients which are thereby produced by no means willingly succumb to any designation that would distance them from their experience or expectation to be treated as healthy and to be acknowledged as such. When they consent to allow their blood to be retained as an identifiable DNA sample, clients do it upon the assumption that they volunteer their healthy blood. As aforementioned, most of them willingly subscribe to this procedure. Yet rare as they are, refusals occur. One instance I encountered during my observations involved a person in his mid-thirties. ‘I gave him the regular speech’, says the research-coordinator, ‘and when he refused to sign the consent forms I sent him to speak with a physician’; ‘Some people are afraid of the insurance implications’, she adds. Now he is at the station of the internal medicine physician. An administrator at the reception desk complains about it because he spends quite some time there and ‘it ruins the whole circulation’ of clients through the different check-up stations. When he emerges from that office the internal medicine physician tells me she did not push him to sign: ‘I am a family doctor by orientation and inclination and I don’t particularly like this strong emphasis on enrolment, so I just sent him to speak with the Director.’ ‘I do not want my DNA to just travel around’, he tells the Director. ‘If they find a statistical probability of this genetic mutation the insurance will cost me more.’ The Director reassures confidentiality but he is not convinced: ‘I also don’t want the psychological burden, I don’t want to know … I’m only here because of my wife who came here also a year ago, because her mother died of cancer and she has an uncle who is ill. I do regular check-ups. If there is a protocol for some blood tests, ok, but nothing beyond that, I don’t see the gain.’ The Director explains the value of having one’s identifiable DNA for family members in the future, and of the value of being able to tailor individual regimes of detection. ‘You have nothing to worry about’, the Director adds, ‘and if you don’t want to know then we shall not include these results in your summary letter’. ‘All that you say applies to people with cancer’, the client replies, ‘and this is not my case. I do not want to be ill without being ill’; and it is this refusal to be transported over to the region of illness that underlies the final discussion which follows.
Conclusion
The central finding in the present analysis is that the ability to subscribe people to the spatial-temporal rhythms of preventive medicine depends on a sustained strategic effort to establish and achieve ‘health’ and not in order to compromise it. Given that transcending boundaries is an elementary feature of network-spatiality, we may mistakenly conclude that preventive medicine’s practices – as a whole an important feature of the present radical medicalisation of everyday life – collapse the distinction between health and illness. However, the findings of this article indicate that preventive medicine does not eliminate this distinction. On the contrary, it is as strong as ever. Illness is not only a dreaded region out there over the border, but in fact a catastrophic leap whereby the whole edifice of preventive medicine is rendered redundant.
Health as an achievement is a post-corporeal affair that performs itself through network-spatiality: the body or some elements of it, as well as bodily test results, move through and circulate through check-up facilities, screening devices, laboratories and medical expert evaluations, all facilitating the preparedness of the body to engage in the ongoing project of assembling one’s health. The network-spatiality of preventive medicine is related not to the bounded regions of health and illness but rather to the bounded regions of ‘more or less’ healthy, to a distinction between health and ‘precarious health’, or safer and riskier health. We are dealing here with the re-spatialisation of health, not of illness. In this mode, ‘the body is no longer regarded as an independent entity, but as situated within a network of biological, psychological, cultural, economic and abstract relations to other bodies, objects, technologies, ideas and social organisations’ and this re-spatialisation, in turn, determines what the body ‘can do, feel, and desire’ (Fox, 2015: 7). As much as the new materialist sociology traces the assembly of illness and of the sick-body, it also traces the assembly of health; the ‘becoming-healthy body’ (2015: 8).
As many studies have recognised, preventive medicine does reshape the experience of what it means to be healthy; and yet it is a reshaping that involves more subtle transitions than any abrupt leap over to the region of illness. Accordingly, the platforms of preventive medicine are designed to avoid any abrupt exposure of clients to the experience of illness. This re-spatialisation of health involves both network and regional spatiality: a relational distribution of circulating bodies (and their extensions thereof in form such as blood samples and medical histories) which depends on maintaining a boundary-type distinction between health and lesser health or even potential illness; a re-spatialisation that sustains a boundary which consists of selective classifications and distributions – based on test results – activating a binary (however dynamic) distinction between lower and higher risks. This is a space, or a spatial configuration, which contains both regions and networks. It is conceptualised here as osmotic-spatiality.
Osmosis involves a process of diffusion: a flow from one region to another through a porous boundary (‘permeable membrane’). In biology, it refers to the movement of water molecules from a region of low concentration (‘diluted solution’) to a region of a higher one, until the concentration of the solution on both sides of the boundary is equalised. Osmotic-spatiality therefore consists of two bounded regions that retain their identifiable distinction but which are nonetheless related through a unidirectional selective movement of elements from one to the other. The osmotic spatio-temporal framework enables the mechanisms of preventive medicine: on the one hand, protecting a region of health as a necessary condition for the enrolment of subjects to regimes of detection and measurement, premised on the idea that testing will keep them in this region. On the other hand, launching a process of testing that necessarily entails an incremental diffusion into the region of lesser health. This is a ‘recursive process’ (Löw, 2008: 39): the circulation on the network of checks necessarily requires further tests, either extended ones or on the basis of periodic routines. Health as an achievement requires an ever growing reliance on check-ups, therefore driving a perpetual quest for health which becomes ever harder to attain (on the recursive character of medical normalcy, i.e. ‘health’, see also Wolf-Meyer, 2014: 155). In osmotic space, where the porous boundary only allows a diffusion from low risk to high risk, one can only become less healthy over time.
What we do and who we are, writes Harvey, ‘is integrally dependent upon the primary spatio-temporal frame within which we situate ourselves’ (2006: 128). The bodies of people who undergo screenings and check-ups are primary building blocks of the spatio-temporal frame of preventive medicine: ‘in perceiving through our bodies’ – in the present case placing our bodies in a network of check-up facilities, waiting rooms, and screening facilities – ‘we form syntheses in our everyday activities as a means of linking together a great multiplicity of objects to form spaces’ (Löw, 2006: 120–121). And in subscribing to circulating on the network of medical early-detection check-ups, these bodily placements and re-placements reshape perceptions and understandings of health in a way which we have previously identified, following the colloquy of its staff, as ‘healthy-patients’. The healthy-patient is both a building block and an effect of the equalising process which underlies osmotic space; it is the one-way diffusion that recursively compromises the healthy subjectivity as the waiting for results and the prospects of carrying risks incrementally increase. The never ending end-result is a healthy-patient who is both ‘here ‘and ‘there’ and yet also always moving from the ‘here’ to ‘there’.
Footnotes
Funding
This research was supported by the Israel Science Foundation (grant No. 1289/15).
