Genetic risks and healthy choices: creating citizen-consumers of genetic services through empowerment and facilitation
Address for correspondence: Alison Harvey, Centre for Biomedicine and Society, King’s College London, Strand Building, Strand, London WC2R 2LS
Genetic testing to identify susceptibility to a variety of common complex diseases is increasingly becoming available. In this article, focusing on the development of genetic susceptibility testing for diet-related disease, I examine the emergence of direct-to-the-consumer genetic testing services and the (re)configuration of healthcare provision, both within and outside the specialist genetics service, in the UK. I identify two key techniques within these practices: empowerment and facilitation. Using Foucauldian social theory, I show that empowerment and facilitation are being positioned as tools for the creation of citizen-consumers who will make appropriate dietary choices, based on the results of their genetic analysis. Through these techniques, individuals are transformed into properly entrepreneurial citizens who will, through judicious choices, act to maximise their ‘vital capital’ (their health) and the capital of the social body. I argue that the user of these services is not purely an economic figure, making rational choices as a consumer, but that her configuration as a citizen-consumer who avails herself of genetic information and services in a proper manner ensures that she is fit to contribute to the economic life of our present.
It has been suggested that genetic medicine is undergoing a ‘qualitative shift’ from ‘the concept of genetic disease to the concept of genetic information in all diseases’ (Khoury 2003: 266). In ‘genetic diseases’, where the gene is the sole causal factor, a test indicating that a person has that gene also confirms that the person has or will, inevitably, develop the disease. With the shift to ‘the concept of genetic information in all disease’, the gene is only one factor involved in disease aetiology, and it is the interaction of the gene with other elements, both genetic and environmental (diet, drugs, toxins, infectious agent etc), that leads to ill health. In this situation, scientists suggest, a test indicating genetic susceptibility provides individuals with information to guide their choices on diet and lifestyle, so reducing their risk of developing disease (see for example Peltonen and McKusick 2001, Guttmacher and Collins 2003, Kaput and Rodriguez 2004, Kaput 2008). In the UK, this suggestion has informed policy (Department of Health 2003b) and is being taken up in practice, with a ‘National Genetics Education and Development Centre’ established to work on integrating genetics into clinical practice throughout the National Health Service (NHS).
In this article, I examine how the notion that genetic information allows individuals to make appropriate health choices is being incorporated into genetic services in the UK. Some work has been done on the impact on genetic counselling practice of testing for predisposition to hereditary cancer (Hallowell 1999, Koch and Svendsen 2005) and haemochromatosis (accumulation of iron) (Bharadwaj 2002), where there are preventive actions that can be taken (screening or prophylactic surgery for cancers, regular phlebotomy for haemochromatosis). However, the way the concept of ‘genetic information in all disease’ is being taken up within wider healthcare practice remains relatively unexplored. Focusing on genetic susceptibility to diet-related diseases, I examine the development of direct-to-the-consumer genetic testing services and the (re)configuration of healthcare provision, both within and outside NHS specialist genetics services. I show that two techniques, empowerment and facilitation, are emerging as central to these healthcare practices dealing with genetic susceptibility. Employing an analysis based in Foucauldian social theory, I argue that these techniques act to ‘make up’ (Hacking 1999) users of genetic services who have the capacities to select appropriate health choices based on their genetic risks. Contributing to the debate on the reconfiguration of health service users as consumers, I suggest that the techniques of empowerment and facilitation create ‘citizen-consumers’ (Clarke et al. 2007) of genetic services.
From ‘genetic disease’ to ‘genetic information in all disease’
The early work of modern molecular genetics was in relation to conditions such as Huntington’s disease, where the presence of a gene conferred certainty that the disease would develop. Diagnosis of genetic risk for such conditions ‘does not imply resignation in the face of an implacable biological destiny’ (Novas and Rose 2000: 485): those so diagnosed are expected to make responsible choices in relation to procreation, for example. However, their scope for action in relation to their own health is limited to preparing for a future of sickness revealed through genetic diagnosis (Harvey 2009).
Biomedical science has moved on to investigate conditions where a genetic element may indicate an increased predisposition to disease but future sickness is not certain, so opening up the possibility for individuals to take action now to secure their future health. Such conditions include the hereditary cancers of breast, ovary and bowel for which genetic factors that significantly increase the probability of illness have been identified. Management of such conditions has become a central part of the work of clinical genetics services offered by the NHS, and is transforming the practice of genetic counselling as it starts to provide support to clients seeking strategies to reduce their disease risk (Hallowell 1999, Koch and Svendsen 2005). Other areas of the NHS are also beginning to have a role in supporting patients as they manage genetic risk, for example in primary care management of familial hypercholesterolemia (high blood cholesterol predisposing to cardiovascular disease) and Factor V Leiden (predisposing to venous thrombosis) (Walker et al. 2001, Department of Health 2003b, National Institute for Health and Clinical Excellence 2008).
More recently, genetic elements contributing to the development of common complex conditions such as heart disease, type 2 diabetes and autoimmune disorders have begun to be elucidated (e.g. Wellcome Trust Case Control Consortium 2007). Testing for such susceptibility genes is increasingly being promoted by commercial companies whose services are available in the UK through private GPs or complementary health practitioners such as nutritional therapists, or directly via the internet (Prainsack et al. 2008, Saukko et al. forthcoming). Despite widespread disquiet in the scientific community about premature application (Janssens et al. 2008, McBride et al. 2008, van Ommen and Cornel 2008), such susceptibility testing is being linked to provision of advice on diet and lifestyle directed at ameliorating such genetic risks.
Where the gene does not predict sickness with certainty but only indicates increased predisposition to disease, the way is opened up for individuals diagnosed as being at genetic risk to take action now to avert future ill health. By making appropriate choices in relation to diet and lifestyle, it is suggested, they can alter the way their genes function to reduce risk of disease and favour health.
The health service user as choosing consumer
A role for user choice in matters of health is not new. Choice has long been part of UK health policy (Greener 2009), but it has come back to prominence under New Labour. Increasing the choice available to patients is integral to policies on curative medical services (Department of Health 2003a, 2007). Preventive healthcare practices are also predicated on ‘millions of people making different choices about the things they do in everyday life which impact on their health’ (Department of Health 2004: 15). A respect for the rights of people to make choices in relation to health is coupled with an emphasis on the responsibility that they have to exercise choice wisely (Wanless 2002, Department of Health 2004).
The reliance of health policy and practice on a model in which individuals are conceptualised as rational consumers making choices in the health marketplace has been much criticised in the social science literature. It has been suggested that the competition introduced via patient choice fails to bring the desired benefits of better and more cost-efficient services, producing instead a proliferation of services at the expense of increased quality of provision (Williams et al. 1993: 58-60, Fotaki et al. 2008: 180). Others have argued that a consumerist model is inappropriate for health as the power relationship between user and provider is inherently asymmetrical (Stacey 1976, Shackley and Ryan 1994, Calnan and Gabe 2001, Henwood et al. 2003, Salter 2003, Bryan et al. 2006). For advocacy groups, a consumerist discourse can be mobilised to justify resistance to professional dominance (Irvine 2002, Allsop et al. 2004). Individual users, however, may be unwilling to be reconfigured as active choosers, with the responsibility this entails, preferring instead to rely on the expertise of health professionals (Lupton et al. 1991, Lupton 1997, Henwood et al. 2003). Where users do seek to adopt the identity of a responsible consumer, this may be fraught with the difficulties of reconciling competing subjectivities (McDonald et al. 2007), particularly in relation to pressures to adopt the ‘preferred’ identity (‘healthy’, ‘normal’, ‘fit’) espoused by biomedicine (Fox et al. 2005, Fisher 2008).
In this article, I argue that the healthcare practices dealing with genetic susceptibility do not assume that users are rational consumers making informed choices in order to satisfy their preference for health. Rather, they act to ‘make up’ (Hacking 1999) citizen-consumers, through the technique of empowerment and facilitation. Empowerment operates predominantly in situations where there is a one-off interaction between service provider and user, as with commercial susceptibility testing services. It works to produce people who understand they have the capacity to take control of the weakness in their genes. Facilitation is found in situations where there is ongoing interaction between service provider and user. It provides guidance and support to individuals as they enact their choices, so helping them to become healthier selves. Through these techniques, the user of genetic services is ‘made up’ to be simultaneously a rational consumer making choices that satisfy their own preference for health and a responsible citizen making decisions that promote the prosperity of all (O’Malley 1996).
The research reported here is part of a larger study investigating the development of genetics as a tool for disease prevention. In this article, I draw on analysis of documentary material related to direct-to-consumer genetic testing services and interviews with health professionals. These sources of data were selected to provide a perspective on how genetic susceptibility testing is being positioned as a healthcare resource by commercial providers and to examine the response of healthcare professionals to the possible use of such a resource within their practice.
Companies studied were those identified from internet searches as offering genetic susceptibility testing via English language websites. Twelve such companies were identified (see Table 1). The majority of these were established in the early part of the century, using the emerging science of nutrigenomics (which investigates interactions between genetic and nutritional variables and the development of diet-related disease) to offer dietary and lifestyle advice based on single nucleotide polymorphism genetic analysis. In the last few years, a new wave of companies has appeared, employing genetic analysis based on genome wide association studies, and these were also included. Documentary material was obtained from company websites. Further information was obtained from UK media reports on such companies, including articles reporting on users’ experiences of their services. Media analysis was restricted to two periods when commercial genetic testing was much in the news: Spring 2003, following the publication of the Human Genetics Commission report on the sale of genetic tests directly to the public (Human Genetics Commission 2003), and Autumn 2007 following broadcast on ITV of the programme The Killer in Me featuring the company Genetic Health.
In conjunction with analysis of commercial genetic testing services, interviews were carried out with health professionals with a potential interest in the area of genetic susceptibility testing for diet-related disease. The professions selected were those that already deal with genetics or dietary health, and were starting to consider the implications of this new sort of testing for their practice. The professions were: genetic counsellors (n=7), general practitioners (n=4), dieticians (n=5) (all working within the NHS) and nutritional therapists (n=6) (complementary health practitioners). Those working for the NHS came from two primary care and two hospital trusts in one geographical region, and the nutritional therapists came from the same region. Ethical approval was obtained from the NHS Local Research Ethics Committee and governance approval from the NHS trusts involved. While the number of participants from each profession is small, the aim was not to provide a definitive account of the professional position but to identify key themes in professional discourse relevant to the particular theoretical framework being employed. Semi-structured interviews lasting between 45 and 90 minutes were carried out, transcribed with participants’ consent, and analysed with the aid of NVivo qualitative data analysis software.
Data were analysed using Foucauldian social theory. The approach taken was an iterative one in which data analysis and conceptual development informed each other (Mason 1996: 141).
In my analysis, I draw on two elements of Foucault’s work on power. The first is the notion of government, which refers to the way that people are both worked on and work on themselves to become ‘made up’ as certain sorts of person. The activities of government are varied, taking place in a diverse range of locations, under the aegis of various authorities, and employing a wide range of techniques. However, while the activities are varied, they have an overall coherence as part of a particular ‘rationality of government’, such a rationality constituting a way of knowing that shapes what is constituted as a problem requiring the activity of governing and what is considered a valid and proper way of addressing that problem. The way that individuals are encouraged to become responsible consumers of health services can be understood as part of a wider ‘advanced liberal’ (Rose 1996, 1999b: ch4) rationality of government. Such an advanced liberal rationality gives a central role to market mechanisms as a means of co-ordinating the actions of autonomous individuals, but considers that governmental activity is necessary to ensure the smooth operation of the market (Gordon 1991: 41). This governmental activity includes ‘making up’ citizens to be properly entrepreneurial (Burchell 1996: 23-24, Rose 1999b: 144), and thus fit to take part in the market.
To be properly entrepreneurial, in advanced liberalism, is not simply to be suitably willing to take risks to accumulate economic capital, but to be an ‘entrepreneur of himself or herself’ (Gordon 1991: 44), working to enhance one’s ‘vital capital’. Vital capital is the value inherent in the capacities of humans as living beings. Here, a second element of Foucault’s work on power becomes relevant for my analysis: the concept of biopower. Biopower is the facet of power that operates to shape these vital capacities. Health is not the only area in which vital capacities can be moulded to increase their value (cosmetic enhancement, though itself increasingly blurred into biomedicine, is another) but it is an important one. The entrepreneurs of themselves of advanced liberalism take responsibility for managing risks to health that might devalue their vital capital. They do not rely on curative medicine to restore such capital, or welfare benefits to compensate for loss of capital should they become sick, but take action today to reduce the risk that they will become ill (cf.Donzelot 1991), monitoring themselves for signs suggesting future sickness and taking appropriate action to prevent its development. They also work to increase their vital capital, engaging in practices such as regimes of diet and exercise to enhance their health and fitness.
In this article, I do not aim to produce a full account of the processes by which we are governed and by which we govern ourselves in the name of genetic health. Genetic susceptibility testing is not a common practice, and the empirical material necessary for an exposition of the actual operation of practices for governing these threats to health does not exist. My purpose is rather to suggest a way of making intelligible the coming into being of strategies and techniques for managing genetic susceptibility, as an advanced liberal rationality for governing our vital capacities. To this end, I divide my analysis into discussion of two key techniques by which individuals are made up as entrepreneurs of their genetic futures. The first is the practice of empowerment, the second that of facilitation.
Developing capacities for maximising one’s health
The theme of empowerment is fundamental to the business of companies offering personalised genetic testing:
- • Sciona informs us that ‘the purpose of a genetic assessment is to educate and empower you by providing a personalized scientific roadmap that you can follow in your journey to optimal health’ (Sciona/MyCellf, 2006);
- • Genetic Health’s services are about ‘empowerment to live your life to the fullest’ (Genetic Health, 2005);
- • deCODE diagnostics promotes itself with the tag ‘understanding risk, empowering prevention’ (deCODE Diagnostics, undated).
Empowerment, in the sense presented here, is central to the practice of health promotion (Downie et al. 1996: 3; see alsoPetersen and Lupton 1996: 9, Williams et al. 1998: 5). Practices of health education (commonly pre-dating health promotion) operated on the basis that individuals are health seeking but may err in unhealthy decisions through ignorance, a deviation that can be corrected by provision of (usually scientific) facts that will allow choices to become properly informed. Health promotion takes a more active role in the production of health. It does not assume that all of us are already health seeking, but works to reinforce the idea of health as a valuable state for which we should strive, and encourages individuals to understand they have the ability to attain this state through their own endeavours. It has been described as a matter of changing ‘attitude’, attitude being a concept that ‘brings together beliefs, emotions and behaviour’ (Downie, et al. 1996: 3; see alsoTones 1986).
Health promotion has been at the heart of public health since the 1970s and the birth of the ‘new public health’ (Ashton and Seymour 1988). During this decade, wellness became promoted as a virtue (Conrad 1994), formulated around activities (jogging, aerobics, the consumption of ‘health foods’) that had already started to appear. Employing practices such as regimes of diet and exercise (Crawford 1980, Conrad 1994), individuals could enter into a quest for personal fitness linked to ‘the idea of an individual moral obligation to preserve one’s own health’ (Knowles 1977: 59). Increasingly, the quest for wellness has become premised on identification of specific threats to the individual’s health, rather than the reinforcement of general ‘healthy lifestyle’ messages. The various screening initiatives offered in primary care, the provision of services to check cholesterol or blood glucose in community pharmacy, and the proliferation of home testing kits and devices such as blood pressure and body fat percentage monitors promote health by encouraging attention to risks pertinent to the individual.
Genetic susceptibility testing similarly focuses on factors specific to the individual that militate against a healthy future. It not only identifies risks to health that can be ameliorated by modifications to lifestyle. It
Genetic susceptibility testing provides information that the ‘genetic entrepreneur’ can use not just to protect but to generate ‘vital capital’ (Harvey 2009), attaining a state of optimal wellness specific to their genetic constitution.
Reports of the use of genetic susceptibility tests in the news media indicate that they can indeed empower, allowing users to ‘take control of their health’. For example, a reporter who took a nutrigenomic test was at first concerned:
By his body language I could tell the news was bad. The doctor’s gaze was fixed on the sheaf of notes in his hand. My genes had been mapped using the most sophisticated screening techniques in the world, and the results were now in. […] [The doctor] took a deep breath and gave me the stark facts: even though I am a 42-year-old man who has never spent a day in hospital, I am likely to be dead by 65.
But after reflection his feelings changed:
Since being given the results of my test, my initial feelings of fear and depression have gradually been replaced by a sense of empowerment. […] ‘There is no need to worry, providing you change your lifestyle’, [the doctor] kept repeating. So that is what I have decided to do. I now have the greatest possible incentive to change my way of life (Maitland 2003).
For another reporter who took a similar test, the information revealed, though initially shocking, put him ‘one step ahead of the game, master of my own destiny’ (Moore 2003).
Of course, the issue of genetic fatalism has been a prominent concern in discussions on the development of genetic medicine. Undoubtedly, even in relation to genes that indicate only an increased susceptibility to disease there is potential for people to interpret a positive genetic test as determining their future. It is possible that the ‘early adopters’ currently purchasing commercial genetic susceptibility tests are those who are already highly motivated to maintain or improve their health, and who are seeking out genetic information because they believe it will aid them to do so. As uptake of such services increases, diverse responses among clients may become evident, with some finding information on their genetic susceptibility disempowering, putting their future beyond their control. Research indicates that people’s understanding of the role of genetics in multifactorial disease is complex and influenced by a variety of factors (Senior et al. 1999, Bates et al. 2003), and further work investigating responses to commercial tests will be necessary. Nevertheless, the reactions of the reporters indicate that genetic information has the potential to empower people with the ‘attitude’ that they should and can ‘take control of their health’.
Becoming a person knowledgeable about genetic risks
Genetic susceptibility testing empowers, first, by highlighting possible futures. For one mother who had her children tested:
I was not shocked to find that we had weak genes. Instead, I was incredibly grateful to know and thankful that we can make sure we do everything possible to help our children’s bodies - and our own - overcome these weaknesses so we may never experience the health problems that could otherwise happen (quoted in Estridge 2003).
The discourse of risk not only construes one’s present subjectivity, it also throws into relief the self one might be in the future. Risk factors are those that militate against the creation of a future we hope for, and to identify something as a risk renders it amenable to action to minimise or eradicate its negative effects on the future (Dean 1999: 131). Knowing one’s genetic risk empowers by revealing the undesirable future that will be, if we do not attend to risk, and the preferred future that can be, if we take steps to properly manage that risk. Through such testing, the person comes to understand her/himself as ‘genetically at risk’, aware that her/his genetic frailty, diagnosed in the present, threatens her/his future corporeal wellbeing.
Secondly, susceptibility testing, linked as it is by the companies offering it commercially to suggested dietary and lifestyle modifications, empowers by showing individuals how they can, through their own enterprise, control that risk. This aspect of empowerment is found even within NHS clinical genetics services:
People do often ask, ‘are there things I can do?’ and we are very honest with people generally. People like to feel a bit empowered, so if there is something we know about that can help them we will tell them (genetic counsellor 5).
As the remit of NHS genetics services has expanded to deal with conditions such as hereditary cancers in which the gene indicates a high probability of disease but not a certainty, the desire of clients to know what actions they can take to counteract that genetic predisposition comes to the fore. The idea is that although DNA might not be alterable one can change its environment to optimise its functioning, so increasing one’s chances of health.
Information on one’s genetic constitution and its implications is not simply a resource that allows the individual to make proper choices, as in strategies of health education. The acquisition of information is, rather, a matter of becoming a particular type of person: knowledgeable. Knowledge, here, is power, not in the Foucauldian sense that power, knowledge and truth are ineluctably linked, but in the sense that being knowledgeable enhances one’s capacities to act. Becoming knowledgeable about one’s genetic risks becomes empowering to the extent that it allows one to improve one’s chances of health. Only when so empowered can a person then engage in work on the self to attain for themselves a place among the moral community of the healthy. Empowerment, in this sense, has been described as a ‘technology of citizenship’ (Cruickshank 1999). It is a technique that turns ‘individuals’ into ‘citizens’, capable of full participation in society – in this case, participation in the drive towards health.
Empowerment is central to the services provided by commercial genetic susceptibility testing companies, where the interaction with users is essentially one-off and requires that those who have used the service are then able to govern themselves on a continuing basis. However, for others who are providing or considering providing personalised dietary advice based on genetic analysis, interactions with users may recur over a period of time. This allows for provision of ongoing guidance in which these various ‘pastors of the soma’ (Rose 2006: 29) facilitate the users’ journey to healthy selfhood.
Guidance on the journey to healthy selfhood
The term ‘facilitation’ does not appear explicitly in my interviews with health professionals. However, the theme of ‘helping clients to help themselves’ is present throughout. In contemporary medical practice (including preventive medicine, which has become an increasingly important part of primary care (Williams et al. 1993)), the principle of compliance (by the patient with the orders of the doctor) has been displaced by that of concordance: co-operative agreement between patient and practitioner achieved through negotiation (Mullen 1997). So, for general practitioners helping individuals to make dietary change:
You have to give people sympathy, and support them, a lot of individual support (GP1).
I will try and tailor it [advice] (GP 5).
Such facilitative practice is also important in allied health professions. As explained by one dietitian:
What we tend to do, or hopefully always do, is look at where that person is at the moment and look at their diet and help them to identify things, maybe small things, that they could change which would be an improvement. We are not necessarily going out for perfection. […] It really is dependent on the person and what they’re eating at the moment (Dietitian 4]).
It is also central in the complementary healthcare practice of nutritional therapy:
It is a question of putting together a sensible programme for somebody. It is important that at the time of the consultation you reach agreement to what the person can do and what changes they can make so at least they can be happy with that. I wouldn’t give them anything unrealistic that they couldn’t achieve (Nutritional Therapist 4).
The role of the practitioner in such therapeutic relationships is no longer as an agent of discipline, operating to regulate and control, but as a guide who assists us in our own efforts to secure our health. As one nutritional therapist explained:
The whole idea of complementary therapies is that you look to yourself and heal yourself (Nutritional Therapist 1).
While another made clear that she does not consider herself dealing with ‘the patient’, rather:
We should call them the client because patient implies we are doing things to them and we are not, we are trying to help them to do things for themselves (Nutritional Therapist 4).
In a similar vein, a dietitian explained the way she worked as follows:
What you do is get the individual and you try and elicit from them what they normally eat, and what their preferences and lifestyle are, and then you try and fit the healthy message into what they will accept. It is all to do with negotiation and agreement. It is not to do with telling them. […] [Dietitians] are not handing out diets, they are not saying ‘this is the diet you must follow’; we don’t do that. We may have diets that people can take away to refer to, but we will try and make tailored advice out of that diet (Dietitian 3).
In these relationships of concordance between practitioner and patient/client, the practitioner is still an expert. The therapeutic relationship, however, has become ‘as much a matter of healing ourselves as being cured’ (Rose 1999a: 218), with therapeutic practices operating to shape the choices we make as free subjects (authors of our own life) rather than by directing the choices we make as obedient subjects (of an external authority). Of course, the discursive shift from compliance to concordance at the strategic level is unlikely to have been translated into changes in practice through all areas of healthcare. There may be many areas where concordance is recognised in principle but not effected in practice, or areas (emergency medicine for example) where full concordance is impracticable. Nevertheless, as the above extracts indicate, the principle of shared decision making is integral to formulation of the way that therapeutic practices should operate in a variety of healthcare settings.
For genetic counselling, founded as it is on the principle of non-directiveness, the shift is not from compliance to concordance but from an imperative of choice to one of prevention (Koch and Svendsen 2005: 824, see alsoHallowell 1999). As Rose has suggested – and as has been backed up by empirical studies of the process of genetic counselling (Bartels et al. 1997, Michie et al. 1997, Williams et al. 2002, Ehrich et al. 2007) – the ethical principle of non-directiveness is ‘inevitably translated into microtechnologies for the management of communication and information that are inescapably normative and directional’ (Rose 2006: 29), for as in any therapeutic relationship, power is present. Nevertheless, in principle, genetic counselling has always considered the client to be the prime actor with authority to make their own decisions as to what they do.
Diagnosis of genetic risk, however, is now becoming linked to actions that can be taken to increase the chances of health, such as engaging in screening programmes following a diagnosis of high risk for hereditary cancer. This move creates new challenges for genetic counsellors. One counsellor talked of how she was trying to convince a client who had been identified as at genetic risk for bowel cancer to attend for the regular colonoscopies that would ensure early detection and thence prevention of disease (Genetic Counsellor 2), indicating that she felt a duty not only to provide information to clients on how to minimise risk, but to advise, or even persuade, them that this was action they should take. Unsurprisingly, given that ‘the physician has sided with life’ (Canguilhem 1991: 226), there is an explicit recognition that the counsellor has a duty to promote health.
This duty to promote health goes beyond encouraging individuals in their efforts to avoid genetic risks to health; it extends to the reinforcement of general health promotion messages. So:
- There is no known association between breast cancer and smoking, but we tell them anyway, it is not a good idea to smoke (Genetic Counsellor 5);
- You are discussing risk across a very broad spectrum [and] relating this to enabling them to do something about their health, so actually relating it to general health issues as well. So if somebody comes to see us and they are smoking 40 a day and are five stone overweight, then their risk is increased anyway, and actually trying to say to them, ‘look you have come because of genetics, but actually that is not as important as stopping smoking and losing weight’ (Genetic Counsellor 4).
Here, it is less important that the action is addressed specifically to the genetic risk than that the patient is given some health-promoting activity in which to engage. Such advice may be sensible in the context of possible future genetic disease, because ‘you will always be able to fight disease better if you keep yourself healthy’ (Genetic Counsellor 5). However, there is also an understanding that the risk of unhealthy activities such as smoking and so on can trump any risk in one’s genes. As such the counsellor has a duty that transcends a concern with the patient’s genes, a duty to aid them to become a healthier self.
Becoming healthy through ‘ethical subjection’
Facilitation is necessary because enacting healthy choices is not easy. There may, of course, be practical factors that militate against the healthy options; for example lack of access to healthy foodstuffs:
- There are still huge pockets of the country where you can’t get fresh fruit and vegetables etc, and some people’s eating habits are still awful (GP1).
Those who are working towards health might find themselves deflected by other imperatives:
- They maybe have other priorities, in people’s lives, like they are going through a divorce, their kids are up to no good, and the council is trying to evict them (GP2).
In other cases, the drive towards health comes into conflict with other aims or aspirations. For example:
- Food isn’t just about nutrients is it, people eat for all sorts of reasons (Dietitian 3).
This dietitian described attending a ceremony at a Sikh temple and watching one of her patients, a diabetic who told her that they ‘never ate anything sweet, ever’, ‘tucking into holy dough, which is pure honey and sugar, and fat’, and realising that for the patient holy dough was not regarded as food in the sense of something to be eaten to nourish the body. The cultural, social, ethical or religious factors that influence which foods are seen as risky or not to be eaten and which should be consumed if one wants to lead a good life (Douglas 1984) might take precedence in shaping people’s choices over the health factors that constitute foods as ‘good’ or ‘bad’.
Facilitation is, then, more than providing support and assistance to put plans for adopting a healthy lifestyle into action. It also involves reinforcing the value of health so that individuals are encouraged to give precedence to health and to control those elements of the self that are not health seeking. The role of the facilitator is to help us choose between different subjectivities, or facets of the ‘dividual’ (Deleuze 1995): between the active self that seeks health and the self that is content to suffer sickness should it happen, between the prudent self that engages in healthful practices and the reckless self that indulges in their desire for unhealthy activities, between the responsible self that attends to health risks and the feckless self that ignores the opportunity to secure their future wellbeing. Once we have made that choice, we can act to bracket off that facet of the self that is construed as undesirable.
Controlling those facets of the self that conspire to thwart the seeking of health requires constant hard work: as one nutritional therapist described:
[It is not the] allopathic way, if you have a symptom we’ll give you a tablet, which will alleviate the symptoms but won’t get to the cause. People are quite surprised at the amount of effort you have to put in to being healthy. I think they think it’s just sort of God given (Nutritional Therapist 3).
This work is not so much a ‘despotism over oneself’ (Valverde 1996: 365), where one acts to subjugate oneself because this is what one has come to understand one should do, an activity that is undertaken in relation to the standards laid out by an external authority. It is more a practice of ‘ethical subjection’ (Osborne 1998: 81) in which we act to control a part of ourselves because this is what we want to do, because by so doing we are being true to ourselves. Once we have chosen which is our ‘real self’, we can then practise the ‘ethical subjection’ that is ‘a form of domination in so far as one dominates oneself’ (Osborne 1998: 81) in which we act to marginalise some aspects of our subjectivity so being true to our true self.
I have argued that the healthcare practices dealing with genetic susceptibility studied here do not understand individuals to pre-exist as rational consumers of their services, making informed decisions to satisfy their wish to acquire health. Rather, individuals are understood to require configuring through governmental practices that empower them to choose health and facilitate their journey towards healthy selfhood. Alongside making up people who can choose health, these governmental practices simultaneously reinforce the imperative of doing so in order to maximise one’s assets. Knowing her genetic susceptibility allows a person to take steps to ensure her future good health. She can protect her stock of vital capital – her health – by acting to minimise the likelihood of future sickness, controlling the risks inherent in her genes by modifying diet or other lifestyle factors. Further, knowledge of her genetic constitution allows the entrepreneurial individual to increase this asset by tailoring her activities to her genetic makeup, ensuring that her genome is operating at its maximum potential, so adding value to her vital capacity. Diagnosis as being at genetic risk shows us who we are; therapeutic practices of empowerment and facilitation assist us in deciding both who we want to become, and how to get there. In this, the actions of individuals working to improve themselves are brought into confluence with the wider good, as through work on the self the value of both the individual and the social body is increased (Rose 1996: 37; Foucault 2000: 94).
These healthcare practices concerned with the government of genetic susceptibility do not, then, operate with a free market economic model of users as consumers, having freedom to make health choices but standing or falling by those choices. Rather, users are made up as citizens or members of the polis, capable of making judicious decisions in the agora or marketplace. It is only so suitably configured that they can participate fully as citizens of advanced liberal democracies. In other areas of healthcare, those who are not amenable to such configuration, who resist their making up as health-creating persons and fail to make the ‘right’, healthy, choices, have been marked out as irresponsible and hence unfit to be self-governing citizens. There have been moves to exclude them from citizenship rights, for example removing the right to healthcare for those that do not care for themselves (denying surgery to those who smoke or who are overweight, as has been proposed as a policy measure). And such individuals are also likely to be subjected to the authoritarian measures that are integral to liberal government (Valverde 1996, Hindess 2001, Dean 2002), designed to force them into health (requiring change of lifestyle or habits before certain medical procedures, as is already part of healthcare practice).
Capitalism might have emerged on the back of a Calvinist requirement for the hard work needed to acquire wealth and the self-discipline necessary if it was to be accumulated, this accumulation of wealth signifying God’s favour (Weber 2002). Such activities necessitated an ascetic attention to the body to maintain its functioning. However, with capitalism established as an economic system with its own momentum, properly functioning bodies are a requirement for its ongoing operation. For Foucault, the processes of disciplinary power were largely a matter of forming ‘docile bodies’ suitable for ‘controlled insertion’ into the ‘machinery of production’ of the capitalist system (Foucault 1991: 25-26, 1998: 141). Contemporary governmental practices are similarly directed at producing economically useful subjects, but here the economically useful subject is one who consumes – variously, health foods, dietary supplements, diet plans, gym membership and so on. In this, we do not have to become healthy in order to be economically useful for the process of seeking health is itself an economically useful activity. But, more than this, the citizen who avails themselves of genetic services is also consuming information – the information produced by nutrigenomic technology, the information revealed by genetic diagnosis, the advice on diet and lifestyle linked to such practices. The practices of empowerment and facilitation not only produce citizens capable of governing themselves for health, so increasing their own vital capital and the capital of the social body. By the act of engaging in these practices of consumption the individual becomes a good citizen contributing to the prosperity of all. In this analysis, tensions between being a consumer and a citizen are dissolved, for the good citizen is the one who consumes healthcare services.
This research was supported by an ESRC/MRC studentship (PTA-037-2004-00011) and ESRC postdoctoral fellowship (PTA-026-27-1869). I am grateful to those who participated in interviews for making this research possible. I would also like to thank Clare Williams and Steven Wainwright for invaluable advice on early versions of this article, and the two anonymous Sociology of Health and Illness reviewers who provided most helpful constructive criticism of the draft manuscript.