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Health Care Standards and the Politics of Singularities: Shifting In and Out of Context
Tiago Moreira Science Technology Human Values 2012 37: 307 originally published online 26 July 2011 DOI: 10.1177/0162243911414921 The online version of this article can be found at: http://sth.sagepub.com/content/37/4/307

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Health Care Standards and the Politics of Singularities: Shifting In and Out of Context
Tiago Moreira1

Science, Technology, & Human Values 37(4) 307-331 The Author(s) Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0162243911414921 http://sthv.sagepub.com

Abstract Context is a pivotal concept for social scientists in their attempt to weave singularities or universals to moral codes and political orders. However, in this, social scientists might be neglecting the ways in which individuals or groups who are excluded from the collective production of knowledge want to politicize their concerns also by claiming their uniqueness and singularity. In this article, drawing on the public controversy about access to dementia drugs on the U.K. National Health Service (NHS) and on the work of pioneering sociologist Helen McGill Hughes on human interest stories, the author argues that the politics of singularities can be articulated in two related ways within technical controversies. First, it expresses the unraveling of sociotechnical ties caused by institutional failure to take concerns into account. Second, it expresses the concrete uniqueness of persons caught by

School of Applied Social Sciences, Durham University, Durham, United Kingdom

Corresponding Author: Tiago Moreira, School of Applied Social Sciences, Durham University, 32, Old Elvet, Durham, DH1 3HN, NC, USA Email: tiago.moreira@durham.ac.uk

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standardized, universal and impersonal implements and/or policies. Both these effects are underpinned by resourcing to allegorical expression, a literary form that while fostering political imagination in technological democracies might weaken Science and Technology Studies (STS) ambitions to influence decision making. Keywords politics of singularity, health care standards, human interest stories, Alzheimers disease, allegory
To generate a collective [ . . . ] it is not enough to draw on an abstract, mathematical, impersonal and dead principle, it is also necessary to have something concrete and alive, personal and historical (Tarde 1893).1

Introduction
Context is a pivotal concept and tool for the social sciences. Staying close to its etymological meaning, social scientists have weaved free-floating universals or isolated entities to locally enacted moral codes, identities, material practices, and the like. In this, context is mainly a verb: an action performed on entities that appear to be unlinked, isolateddecontextualizedto reveal, or enact its social, collective character because, as Strathern argues, the notion of a decontextualised process already implies or points to the wider context from which it has been carved out (2002, 304). One particular domain where this is most evident is in relation to health care standards. In general terms, health care standards are documents or protocols aimed at uniformizing the identification of diseases, their diagnostic workup, their clinical management and care, or of providing means to evaluate these activities in a consistent, systematic way. Their character is eminently political as they are explicit attempts to shift the status quo, either with the intention to reduce cost of care or change the power relations and/or inequities embedded in health care systems (Timmermans and Berg 2003, 22-4). The authority and implementation of standardization policies is, however, to a large extent underpinned by the work of carving out information and evidence from the contexts where it was originally produced (Moreira 2007). Not surprisingly, social science research on health care standards, including my own, has aimed to provide context to such decontextualization attempts. This has been done mainly according to two models. In the first model, which I will call the domestication model, researchers investigate

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the ways in which actors adapt and incorporate standards to their working practices, making such technologies at home in the local context (e.g., Hanlon et al. 2005). In the second model, which I will call the sociotechnical model, researchers investigate how standards and contexts are in a continuous and emerging interactive relationship (Timmermans and Berg 2003; Moreira 2005). In this article, I focus on a third type of relationship between standards and contextsthe catalyzing modelin which the deployment of a standard is seen as responsible for generating or accelerating the formation of new, local, differentiated singularities (Thevenot 1984, 40). In line with this, Callon has argued that standardization in contemporary techno-economic networks produces new forms of exclusion, where individuals or groups are locked out of the process of knowledge and technological production, mediation, and use and thus of participating in collective decision making (Callon 2007). Drawing on Strathern, he sees this as a process of proliferation of the social in which new social identities and concerns are generated through self-description (2003). Importantly, he calls upon social scientists, and STS in particular, to assist those groups in the elaboration and explorations of issues, helping them to politicize their concerns and enter the collective negotiation of common worlds. The politicization of such groups or individuals has been mainly associated with the ability to amplify and generalize their concerns in appealing to the common ground or common view (Aristotle 1984) that is seen to underpin the gathering of people in movements, cities, nations, and so on. In this, context is key to a form of political mobilization and the construction of collectives that departs from the singular and moves toward the general drawing on models of the common good (Boltanski and Thevenot 2006). The assumption is that in isolation, as absolute, irreducible singularities, these persons or groups are unintelligible, unrelatable, and apolitical. However, as Rabeharisoa has recently argued, collectives emerge because individuals who were not ensnared by the social link want to argue for their belonging to a group and at the same time assert their singularities (2008, 3). The articulation of concerns and elaboration of a collective is structured by a dynamic relationship between generalization and singularization, one equipped by the weaving of links and the demonstration of commonalities and the other sustained by the unraveling of ties and the expression of uniqueness. My interest in the politics of singularities is linked to the need to understand the expressions of public concern sparked by the guidance provided by the National Institute for Health and Clinical Excellence (NICE), a special authority within the English and Welsh NHS, on the clinical and

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cost-effectiveness of dementia drugs (NICE 2005, 2006). One consistent feature of the reports, arguments, and evidence deployed in objection to NICEs advice to restrict access to these drugs on the NHS was the use of cases and human interest stories depicting the lives of patients or families that had had access to the drugs before the guidance was drafted. Used to explore the subjective, fuzzy, unmeasurable benefits from and the possible injurious consequences of not having access to dementia drugs, these stories resonate with those analyzed by Hughes in her pioneering study News and the Human Interest Story (1940) in that the predicaments of particular individuals were indirectly linked to the production of wider public issues and policy. The littleness of these little news was an important, if not fundamental, aspect of the politicization of the concerns of those excluded by the establishment of an health care standard. My argument, explored below, is that this littleness articulated the politics of singularities within the dementia drugs controversy in two related ways. First, it expressed the unraveling of sociotechnical ties caused by institutional failure to take concerns into account. Second, it expressed the concrete uniqueness of persons caught by a standardized, universal, and impersonal health care policy. But in so doing, they opened the possibility of new political weavings of the issue at stake, a reimagining of the politics of health care standards that could only be alluded to. My suggestion, which I will develop in the concluding section of the article, is that the predicaments experienced by actors wanting to politicize their claims to singularity should serve as an object lesson on the mobilization of context in STS. By letting generalization and specificity be in dialectic in our writings (Star and Bowker 2007, 280), we could foster a political imagination that undercuts the need to rise above particular issues, persons, or groups in public deliberations but this might be at the price of not bearing directly on the politics of standards.

Efficiency Versus Familiarity

In the past decade, a variety of countries have implemented different systems of priority setting or explicit rationing in health care (Ham and Roberts 2003). Among these, the United Kingdom is usually held as a particularly significant case because of how it has attempted to combine high technical standards of health technology assessment with procedures of deliberative democracy in the workings of the National Institute of Clinical Excellence (NICE; now National Institute for Health and Clinical Excellence). Created in 1999, NICE provides guidance on clinical and

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cost-effectiveness of individual technologies (health technology appraisals [TAs]) and the clinical management of specific conditions (clinical guidelines). Among these, TAs have been the object of consistent public attention as they are seen to cause harm by barring vulnerable individuals from accessing health care. Since its creation, a variety of public controversies have been sparked by NICEs guidance on treatments for conditions such as breast cancer (Milewa 2006), multiple sclerosis (Crinson 2004), and dementia. At the heart of these controversies is NICEs use of expert-led judgments using costutility analysis, a type of economic evaluation that uses the Quality Adjusted Life Year (QALY) as a standardized metric for comparison across illnesses and technologies (Ashmore, Mulkay, and Pinch 1989).2 The case of dementia drugs is the ideal vehicle to understand these processes because the use of costutility analysis was fraught with uncertainties that enabled stakeholders to attempt to reframe the issue.

Modeling Dementia Drugs

Motivated by the view that there was emerging research concerning the cost-effectiveness of cholinesterase inhibitorsdrugs that prolong the half-life of acetylcholine in the brain so as to enhance learning and memorythat had not been taken in consideration in its previous assessment, NICE decided in January 2004 to initiate a TA of these therapies. In its first assessment in 2001, NICE had recommended cholinesterase inhibitors for treatment of mild and moderate dementia on the NHS mainly on the basis of their clinical effectiveness as it considered that the available quality of life measures for dementia has not been validated and judgments on this domain remained uncertain. In setting the scope for what was to become TA111, NICE and the Department of Health contextualized the review by stating that it was set on the basis of pace of change in the evidence base. This related both to randomized controlled trials (RCT) of these treatments that had been published since 2001 and to new research on the costeffectiveness of these drugs. However, while the overall assessment for clinical effectiveness of cholinesterase inhibitors had remained virtually the same after the publication of new researchthat these treatments have modest effects on cognition and are less effective on global clinical measuresthe view on the health economics front was shifting toward a view, where these drugs were regarded as cost-neutral at best or not cost-effective at all. It was against this backdrop that the Southampton Health Technology Assessment Centre (SHTAC), the research institution commissioned by

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NICE to carry out the review, framed its evaluation of dementia treatments. If, on the one hand, its protocol did not differ significantly from the one that had supported the 2001 evaluation, SHTAC researchers drew on the shift in the way the economic value of these drugs were viewed by experts to propose a break with the previous TA. While they agreed with the previous assessment that most quality of life instruments used in dementia are inadequate and problematic, they suggested, based on a cross-sectional study conducted in Canada, that it was possible to draw equivalences between cognitive scores and other dimensions of quality of life to construct health utilities. This allowed SHTAC to construct an economic model through which they could calculate the preferred metric used by NICE in their advice to the Department of Health (DoH), the cost-per-QALY gained. The SHTACs model for dementia drugs was underpinned by the question: can these treatments delay institutionalization? (see Figure 1). It thus measures the costs of maintaining individuals with dementia in the community with and without treatment (plus cost of care in this health state for State expenditure) against the cost of full-time care. To be able to construct this model, it was essential that the health states before and after institutionalization could be mapped onto data of clinical effectiveness of these drugs because, in the absence of clinical trial data on cost-utility (and having rejected the manufacturers submission on cost-effectiveness), it was essential to link the effects of drugs on cognition measured in trials with assumed changes in health utility scores. This led to setting the cost-per-QALY gained for these treatments twice or more above the NICEs recommended threshold of 35,000 (Rawlins and Culyer 2004). This meant that antidementia drugs should no longer be available for the management of patients in the NHS.

Claiming Familiarity
A contrasting form of ascribing value to these treatments that emerged during the calculation and immediately after the publication of TA111 was brought forward separately by the main patient organization for dementia in the United Kingdom, the Alzheimers Society (AlzSoc), and by parts of the clinical constituency. They are underpinned by drawing on the familiarity these actors claim to have with the condition and the effects of the drugs in question. Already in their own submission to NICE, the AlzSoc had produced an alternative methodology for evaluating dementia drugs: a survey questionnaire that focused on user-defined outcomes delivered to its members. In the

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Figure 1. The Southampton Health Technology Assessment Centre (SHTAC) model.

results of the questionnaire, the ability to maintain functional abilities of daily life and improvement in attitude and mood were considered more important that the cognitive outcomes achieved by patients. Designing and conducting its own research in the wild (Callon 1999), the AlzSoc emphasized that the maintenance of abilities and quality of life rather than cognitive enhancement was attached to patients and carers experience of the dementing process and correlative evaluation of pharmacotherapy. This was demonstrated in an hybrid form, in which survey results and results from clinical trials were combined with consistent recourse to

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quotes and stories from patients and carers about the effects of these treatments. In these stories, the importance of everyday life is present throughout. This statement from a carer used as epigraph to the submission is an informative example:
Within three days [of taking dementia drugs] hed calmed right down and by the end of four weeks he was a completely different person. No longer incontinent, could wash and dress himself with no help, no more hallucinations and joy of joys was sleeping all night. Started doing jobs around the house [ . . . ] Alzheimers Society (2004)

Or in this story from another carer:

After ten days, my husband was a different person. We were able to chat about every day affairsnot living on two different orbits. He has his sense of humour back and we enjoyed a good laugh Alzheimers Society (2004)

In both these stories, carers provide a narrative of how they noticed the drugs were taking effect. Instead of the cognitive scores used in clinical trials and in SHTACs construction of the QALY, carers evaluated effects in changes to domestic, familiar routines: sleeping, getting dressed, washing, or talking everyday affairs. These were small changes but of great significance for those concerned. This is because the value ascribed to the drugs becomes grounded in the way dementia has affected specific lives and eroded the practical arrangements that people have constructed previously. It is the specific, singular character of those arrangements that gives meaning to the changes brought by the treatments. Thus, in publicizing their concerns about NICE draft guidance, the AlzSoc rearticulated the notion of value that is mobilized to evaluate health technologies by calling upon the experience of patients and carers, as those who are familiar with the disease. According to the AlzSoc, NICEs guidance was right about the wrong kind of knowledge. NICE had taken knowledge built on research with a preference for the psychologists office or the consultation room as experimental settings, and ignored the home as a relevant epistemic device. In this, the AlzSoc response to the draft guidance also alluded to the possible consequences of withdrawing these treatments, on whatever basis, on the lives of patients and carers. Such withdrawal, they argued, would deteriorate the links between patients, carers, and these technologies, and have detrimental effects on the emotional fabric of such aggregates, and possibly

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on the community as a whole. For example, in a quote from a carer included in AlzSocs official response to NICE in March 2005, it could be read that,
It is shocking to think that quality of life for both patient and carer should be treated with such disdain and abandonment, as this is how it feels having read the Nice review statement. Are we to go back to the dark age when dementia was not worthy of diagnosis and patients were seen as senile and hidden away? (AlzSoc reponse, 35)

The reference to going back to the dark age is of key importance here. The temporal transition that it encapsulates is that of the establishment of Alzheimers Disease in the U.S. public space in the 1970s. In this, the work of the Alzheimers Association and the National Institute of Aging in mediating between an emerging research community, on the one hand, and policymakers and political constituencies, on the other, can be seen as an example of the politicization of excluded others as discussed earlier in the article. In their attempts to politicize Alzheimers, the Alzheimers Association drew on the reconceptualization of senile dementia as a disorder of the nervous system, which in itself was partially building on emergent biochemical models of neurological diseases such as Parkinsons. Such reframing of Alzheimers Disease meant not only that the condition could be understood through experimental, laboratory investigations but also that it could potentially be manipulated therapeutically. This therapeutic optimism allowed the Alzheimers Association to frame the issue of dementia as one where sufferers were being abandoned and disdained by researchers, health care practitioners, and politicians who saw dementia as an irredeemable, mainly psychiatric condition (Fox 1989). This, according to the Alzheimers Association, left patients and carers isolated, carrying alone the burden and shame of the disease. That the Alzheimers Association was successful in this politicization was very much a contingent outcome underpinned by the National Institute of Agings inability to otherwise construct a politically sustainable program of research. As an alternative to a broad aging research program, which suffered from lack of funds, little or no academic interest in the topic, a small cadre of investigators, the absence of a compelling scientific story, the lack of scientific credibility, and inadequate resources and infrastructure (Khachaturian 2007), Alzheimers disease was to become the paradigm of disease-focused research followed by the National Institute of Aging (NIA) because it provided a clear vision of organization of research and understanding of aging in which the focus was to be identification and

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manipulation of biological and epidemiological factors behind pathological aging (Holstein 2000). This meant that considerable public attention as well as a program of research and an intensive reorganization of health care services had Alzheimers disease as a focus during the 1980s and 1990s not only in the United States but also in Europe, Australia, and Japan, to the extent that contemporary commentators voiced concerns about the possible Alzheimerization of aging. This process gained a further impetus in 1997 with the market release of cholinesterase inhibitors, and by the end of the 1990s, a set of expertises, diagnostic standards, therapies, and services were available to persons experiencing memory problems. For the AlzSoc, NICEs pessimist guidance undermined the very existence of this sociotechnical world built as it was on the therapeutic optimism and technological expectations advanced since the 1970s by the alliance between patient organizations, researchers, and policymakers (Moreira, May, and Bond 2009).

Familiarity and Allegory

What is particularly significant, from a STS point of view, about AlzSocs objections to NICEs guidance is that they emphasized the technological mediations that enact a particular form of life. To make this argument, they drew on effects and relationships that are best described as familiar, in the sense that it is the proximity with the problem that provides them with a form of knowledge. They saw dementia drugs as partaking in the organization of a sociotechnical world but in ways that could not be clearly traced or measured. This is exactly because the types of effects that are witnessed by carers and clinicians are specific to changes brought to a habitual way of doing things in material environments. They are personalized, so to speak, and immersed in a myriad of social and technical relationships. To decontextualize those effects, the AlzSoc and clinicians appeared to be saying, is to do violence to the links that make them meaningful and powerful. The problem for NICEs opponents was finding a way to express such fuzzy concepts to support their arguments in the public space. This difficulty is understandable from the perspective of the social study of knowledge. Thevenot, in his conceptualization of regimes of engagement, argues that the regime of familiar engagement produces information that is not easily transportable. Concerned with the way persons accommodate themselves to their environments through trial and error, the regime of familiar engagement deploys knowledge that is fragmentary and specific to a customised thing and [does] not identify standard objects in their

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entirety (Thevenot 2007, 416). This means that the measure of adequacy of a particular action or attachment is grounded in how the body of the person in question is comfortable with specific arrangement of things around him or her. A minimum of coordination is required: there is no need to communicate to others the reasons why such arrangement is comfortable. Thevenot further argues that if a situation arises in which such action or attachment is deemed accountable to others, alternative regimes have to be deployed in the form of a plan or notion of a common good. The politicization or socialization of actions and effects cannot be made through the regime of familiar engagement. Thevenots view of the familiar is compelling because of how it proposes to describe something that, in his own words, hardly lends itself to extended communication (Thevenot 2007, 416). In attempting to bring familiar effects to bear in the public space, the AlzSoc and its allies encountered this same problem: it was difficult to make common issues that could only be understood as specific to persons. However, rather than following the path envisioned by Thevenot, ALZSocs strategy of referring to the familiar appears then to be an indirect one. Presented with NICEs clear, finished account of the effects of dementia drugs, they were only able to provide what Cooper and Law would call a proximal view of the same issue (1995). Proximal knowledge deals in the continuous and the unfinished [and] manifests implication and complicity (Cooper and Law 1995, 239). Proximal knowledge can only thus be indirectly expressed, through connotation rather than denotation, through allegory rather than analogy (Law 2004). In suggesting this conceptual model, Law is also interested in understanding the ways in which such alternative ways of enacting objects of knowledge can be made to count in the public space, how they fully deploy their political character. His suggestion is that allegory enables the gathering in tension of multiple, sometimes contradictory realities (Law 2004, 97-100). This version of the politics of familiarity is that it can be produced without having to aim for a common ground, a coherence that holds the gathering together. In this respect, allegory is integral to a conceptualization of the political that emphasizes the disagreement, tension, ambiguity, and the unexpected (Barry 2001) rather than the weaving of increasing levels of generalization and the production of commonalities. Allegory plays a fundamental role in this because it expresses the ambiguous, multiple, unfinished character of the political gathering: it refers both to the different commonalities that can be weaved through entities and to their singular, concrete uniqueness.

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As we saw above, the presentation of cases enabled the AlzSoc to present the familiar engagements that were supported by dementia drugs and how their withdrawal would strike at the foundations of this sociotechnical world. But in what way are case stories an allegorical form of public, political expression? To be able to understand this it is necessary to focus more intensely on the case story form.

Case Stories between Generalization and Singularization

In his seminal article News as a Form of Knowledge, Robert E. Park argued that news were an information format that particularly suited rapidly changing societies by providing a form of social bonding that was linked to a specious present rather than a sense of common history or values. The transient and ephemeral character of news was, however, only to fulfill this integrative function if they could spark conversation and this was best achieved by reports of events that bring sudden changes: a disaster, a brutal killing, a dramatic fall in the housing market. These stories were able to produce such effects because, according to Park, they referred to to what is true of life and of human nature everywhere (Park 1940, 681). In suggesting this, Park was advancing an argument that he had worked on with Hughes, whom he supervised in the writing of News and the Human Interest Story (1940). In this book, MacGill Hughes observes that the emergence of tabloid newspapers in the United States coincided with the arrival of flows of European, illiterate emigrants in the nineteenth century. She argues that tabloids reporting of human interest stories was pivotal in the weaving of ties across such diverse populations. Running against intellectual worries about tabloidization of the news, MacGill Hughes sees a generative, aggregating power in the reporting of little news. Their transparent, interesting, and apolitical character, she argues, had the paradoxical effect of building communal ties among those who were excluded, by education or condition, from participating in public affairs. Such weaving of communal ties for these excluded others could be enacted through little news because contrary to technical news [which] assume the merits of the status quo, personal news challenge it (Hughes 1942). In a reworking of MacGill Hughes work, Fine and White further clarify how little news are able to challenge the status quo by pointing to the fact that littleness can be equated with the lack of institutional sponsorship (Fine and White 2002). This they link to the open character of human interest stories: because these stories are not equipped with an institutional

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frame, they provide an open basis for a collective identification. The lack of boundaries and conditions of access to an involvement with the story powerfully organizes communal ties across the social divisions and fractions of the day. Openness also refers to the reporting of an unfinished event. This facilitates involvement by making it possible to imagine that the course of events can still be changed. A third crucial factor in this is the uniqueness of the story reported. This is what makes it human in that it reports on a unique person entangled in a singular set of circumstances. Despite their attention to the aspects of the case story that enable the creation of common concerns, Fine and White still do not elucidate how such unique, open, transparent stories enact such powerful effects. How can a singular, unrelated event be weaved into the collective? To answer this question, Boltanski draws on Adam Smiths figure of the moral spectator (Boltanski 1999). Boltanski argues that, in The Theory of Moral Sentiments, Adam Smith is suggesting that a moral response to unfortunate events does not have to be based upon the possibility of reversal of fortune (It could have happened to me). Instead, the distance between unfortunate and spectator can be bridged through the faculty of the imagination, in which each positionspectator and unfortunateenters into a reciprocal, symmetric picturing of each others feelings. In addition, the spectator is herself a composite, a reflexively produced figure of the interaction between an ideal and an ordinary spectator, joining in its signification the seemingly opposite qualities of the most precise individuality and the most extensive generalization (Smith in Boltanski 1999, 41). This dynamic between singularization and generalization is constitutive of the symmetric imagination of the other that the moral spectator deploys in the public sphere. The human interest story is the ideal support for such imaginative mediation because its openness implies that it exhibits rather than specifies meaning, alludes rather than denotes. As such, it is an allegorical construct creating the conditions under which the reader can recreate the case in imagination (Kemmis 1980, 127). The firing of the imagination is also triggered by its uniqueness, which social scientist tend to ignore in their accounts. However, in neglecting the expression of singularity in the case story, they ignore how stories can be used to express the belittling, localizing, excluding effects that come from institutional failure. In this, the uniqueness of the story lies at the core of a strategy of expression of singularization. This means that the imagination of the case is linked to two processes. On the one hand, cases apolitical character paradoxically enable the creation of communal ties for excluded others. On the other

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hand, cases express a politics of divergence (Barry 2001) that is brought to bear, when sociotechnical ties are unraveled and contexts undone.

Stories of Disintegration and Uniqueness

As I have argued above, one important aspect of the actions deployed in the public space to object to NICEs advice to restrict access to dementia drugs on the NHS was the use of cases and human interest stories depicting the lives of patients or families that had had access to the drugs before the guidance was drafted.3 This recourse to small, personal stories expressed singularity in two related ways. First, they expressed the unraveling of sociotechnical ties caused by institutional failure to take concerns into account. Second, they expressed the concrete uniqueness of persons failed by a standardized, universal, and impersonal health care policy. The example below will illustrate how these aspects are linked:
I need it so I can keep running (Guardian, August 11, 2007). John Stevenson, 60, was diagnosed with Alzheimers seven and a half years ago. He was immediately prescribed Aricept, which he and his wife Mary credit for the fact that he carried on working as a chartered surveyor for two years, has given three daughters away and last autumn completed the Great North Run in two hours 32 minutes. Its a tremendous benefit. We have had a real quality of life to enjoy. He knows his five grandchildren, says Mrs Stevenson speaking from the Royal Courts of Justice in London yesterday after the verdict upheld last years decision that people who are diagnosed now with early Alzheimers wont be prescribed Aricept. Mrs Stevenson says: Two weeks ago he went back for his six-monthly check up and his memory had not declined at all. His speech is a little worse but his memory was just the same as six months ago. The drug works for him. It has staved off the worst years for us and given us a little more time together and me a bit more time to prepare myself. [...] Mr Stevenson speaks falteringly. Without having the medication I wouldnt be able to be here now. Its that bad. If I didnt have it it would mean more things I wouldnt be able to do. I need it now so I can keep on running.

The story starts by presenting John Stevenson as an Alzheimers sufferer who despite his illness has been able, with the help of a cholinesterase inhibitor, to continue working, participating in family life, and running. Such

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activities are, we are told, threatened by the Royal Courts of Justice decision to reject the claims for judicial review submitted by the drug manufacturers and the AlzSoc. This threat is reinforced by Mrs Stevensons assertion that without having the medication I wouldnt be able to be here now. The recourse to the first person singular is of key importance here: it expresses singularity. Read from this perspective, the information we are given about Mr Stevenson gains retrospectively a new strength. The I in question belongs to a particular arrangement of people and thingsincluding drugsthat is more than the combination of the variables of illness, age, profession, family structure, and leisure practices. The uniqueness can, however, only be allegorically alluded to, which is achieved by the repeated reference to running. His love of running provokes an imagination that relates to the concrete uniqueness of Mr Setevensons person. What is more is that this uniqueness is endangered by a decision taken elsewhere, a decision that precisely failed to take this uniqueness into account. A similar example of how uniqueness and unraveling of ties are connected can be taken from the Daily Mail, which ran these case stories as part of their campaign to end restrictions on Alzheimers drugs:
Rosie Boycott with her father Charles (Daily Mail, February 27, 2007). I remember clutching Charlies hand. We were to be married in nine months and the thought that my dadthe dad I knew and lovedwouldnt be with us was overwhelming. I asked how long hed got. Id say that he wont know much of anything by next spring, the doctor answered. It would be too lateour wedding was in July [ . . . ]. Suddenly, he was no longer the one man in my life who Id always be able to depend on: the doctor had told us that Dad was, in effect, slowly going mad. It was then the late autumn of 1998 but Dads problems had started a long time earlier. It is impossible to say exactly when his memory lapses stopped being something that his grandchildren giggled about and turned into something more serious. The warning signs built up: there was an incident the Christmas before when hed been on his way to spend the holiday season with my sister, who was married to a Danish architect and had five children. He forgot his passport and was turned away at Heathrow. He took a taxi the 140 miles back to Ludlow, collected the passport, got himself on a later plane to a different airport in Denmark and thenno one is quite sure how this happenedgot into a chauffeur-driven car that was due to pick up someone else. It was only when he arrived at a grand Danish home that he realised his mistake [ . . . ].

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His behaviour became increasingly erratic: he would wander off with his dog across the fields, oblivious when it started chasing sheep. I later learned that dogs owned by Alzheimers sufferers tend to go mad, toosometimes as a result of getting no food, or getting three meals at once. Pets lose their sense of belonging and become frantic, insecure and aggressive [ . . . ]. My father was a former Army officer, solid, upright, decent, someone I had counted on for love, advice and support. Now, as I watched him wave his arms in the air and scream, saliva dribbling from the side of his mouth, I realised I was looking at a stranger [ . . . ]. While the doctor had been emphatic in his prognosis that my fathers dementia was irreversible and would eventually lead to a zombie-like condition and death, he did say that he would prescribe him the one drug that seemed to slow the process. In my pocket was a prescription for Aricept and the following day Dad started the course of medication. The results were, to my mind, quite astonishing. This is not to say that my father got better: he was never going to. But for the next 12 months or so, he enjoyed a more or less unbroken succession of good daysdays when he was calm, dealing with his memory loss in a fatalistic way, rather than raging so ferociously against the dying of the light [ . . . ]. But Dad was one of the lucky ones. Last November the National Institute for Health and Clinical Excellence (NICE) announced that Alzheimers sufferers will no longer be prescribed drugs such as Aricept when they are first diagnosed.

Written by Rosie Boycott, the famous British feminist journalist, the story tells of a series of incidents that allegorize Boycotts father cognitive decline. The events relevance is linked to how it upsets the expectations Boycott and others put on Charles behavior: her wish he would come to her wedding, the invitation for Christmas in Denmark, the responsibility to take care of a pet, her counting on him for support. In this, Boycott builds a tension between how her father used to behis uniquenessand his behavior at the time of dementia onset, which she interprets a common to all Alzheimers sufferers. He was no longer himself, she was looking at a stranger. Such tension is somewhat resolved when Charles is given a cholinesterase inhibitor: calmness and solidity returned to his person even if some of the other characteristics were missing. The familiar returned. Onto this, Boycott builds another contrast: that between her father and newly diagnosed patients with Alzheimers disease. What distinguished them is luck. The drawing on the concept of luck is ambivalent. On the one hand, it could be seen as a means to render NICEs decision understandable: luck and arbitrariness run public affairs and there is nothing that can be

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done about it. On the other hand, it alludes to the irrationality that the opponents of NICE saw in its guidance on dementia drugs. The inability to make sense of, to weave the decision into a recognizable common good, to contextualize it, is key to the politicization of their concerns. This produces a moral parallel with the unraveling of social and technical ties that the decision produces: without the drugs, Boycotts story seems to be telling us, persons will loose their uniqueness and become the disease. In this story as in the previous one, the unintelligibility of NICEs decision is similar to the obscure reasons that motivate Greek gods to change the fortune of humans. As tragedies, they inspire pity and fear from readers (Park 1940) and inspire the social bond that excluded others are claiming for themselves. However, alongside the imaginative generalization that is sparked by these emotions (Boltanski 1999), stories also displayed the emotions of the sufferer/carer:
I want my mothers gravestone to read: Betrayed by the NHS by Helen Clark (Daily Mail, February 28, 2007) I am joining with the Daily Mail to challenge the Government, which I believe betrayed my mother. When she died aged 85, I, a former Labour MP, wanted to write on her gravestone: Betrayed by the NHS and a Labour Government [ . . . ]. The Governments track record is lamentable. In 1998, Alan Milburn, then Health Secretary, promised to end the postcode lottery which had left NHS trusts free to deny drugs to sufferers. I sat in the chamber of the House of Commons and heard him give hope to millions. In 2001, the National Institute for Clinical Excellence (NICE) said it would approve these Alzheimers drugs which would transform so many lives. In March 2005, it slammed into reverse and effectively banned them on cost grounds. I put down an Early Day Motion in the Commons, condemning this heartless decision. Now, NICE has decreed that they may be prescribed only to patients in the middle stage of the disease (an irrational, cruel decision, since by then it is often too late) [ . . . ]. So as I sat in church at my beautiful, brave mothers memorial service, I felt a deep sense of anger [ . . . ].

This story, written by a former Labour Minister of Parliament (MP), speaks of political betrayal. Promises were made to end the postcode lottery and instead irrational, heartless decisions are enforced by the very

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government that made such promises. This causes Clark to experience anger instead of grief on the day of her mothers memorial service. Indeed, anger was the most recurrent emotional trope used by patients and carers interviewed in support of challenges to NICEs guidance. Anger usually evokes loss of control. In this context, however, Clarks statement appears to allude to the voluntary removal from the center of control (in this case, parliament). This is particularly significant because it displays anger as a positive, public expression (Katz 1999, 331). Clark has decided to come out and join the Daily Mail and AlzSoc campaign against the government that she used to support. From this perspective, there is a symmetry between the governments betrayal of the public and Clarks betrayal of her party allegiance. The expression of anger comes over her, however, in the most personal of moments, her mothers memorial. This powerfully relates anger to the enactment of self-martyrdom as the suffering and isolation caused by NICEs decision precludes Clark from feeling guilty about her shifting of alliances. What appears to be happening is that anger enacts the singularity that sufferers are asserting in the public space and that this works in tension with the pity and fear that their condition provokes. There is thus a complex interaction between politicization and depoliticization. On the one hand, stories gain political significance because they can display the consequences of institutional failure, the breaking down of the familiar context. On the other hand, such display can only spark the imagination if uniqueness is carefully crafted into the story. To do this, writers have to personalize the accounts by detailing situations that are easily recognizable as unique (e.g., crying of anger instead of grief in a memorial). From this perspective, the expression of singularity is always allegorical as it has to rely on shared meanings and contexts to be understood and taken into account.

Shifting In and Out of Context

The previous section explored the predicament experienced by actors wanting to politicize claims through human interest stories in that to articulate uniqueness they are required to draw on shared meanings and common grounds. In effect, they are required to contextualize in order to exhibit the unraveling of sociotechnical ties and allude to their concrete uniqueness as persons. This means that the politics of singularities works in a dynamic relationship with the politics of generalization. Persons or groups locked out of the collective production of evidence capture the public imagination by shifting the frame of reference. The political imagination of the case is the

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delicate effect of the displacement that gathers in tension the most extensive generalization and the most precise individuality. If the articulation of concerns and elaboration of collectives are structured by dynamic displacements between generalization and singularization, figuring the role of the social scientist in this proliferation of the social is not straightforward. Earlier, I suggested that social scientists are adequately equipped to weave and make visible the links that sustain seemingly free-floating, isolated entities, and that this has sustained the two main approaches to health care standards: the domestication and the sociotechnical models. These approaches actively change the frame of reference for entities that have been carved out of context. The catalyzing model that has informed this article suggests that these displacementsin and out of contextare essential to the politicization of excluded groups. Our attention should focus thus on understanding the conditions underpinning the achievement of contextual displacement. Again, the case of the dementia drugs controversy is informative here. In January 2006, after much public debate, NICEs Appraisals Committee changed its recommendation, suggesting that cholinesterase inhibitors should be available for patients with moderate dementia but not for those with mild or severe forms of the illness. The recommendation rested on the proposal that access to drugs should be decided by the score obtained by patients in the Mini Mental State Examination (MMSE), a widely used screening tool for dementia. This was followed by further controversy (Moreira 2010), which eventually led to a number of appeals. In the appeal hearings, patient advocates argued that NICE had failed to take into account how using a QALY approach unfairly disadvantaged persons with dementia for which there was no validated quality of life instrument. They claimed that, to be fair, NICE would have to look into the specificity of the illness as experienced by particular persons. For NICE, the question of fairness was a different one:
[ . . . ] the question is should we dig deeper in isolation or should we dig deeper in fairness to all other patient groups and all other appraisals? We have done in excess of 100 appraisals now on different diseases [ . . . ] The committee consider it very important to make these judgments on as even a playing field as possible although that is not without cognisance of the fact that there will be particular issues around each disease group. We need a fair assessment tool

The QALY was needed, Prof Stevens was arguing, to secure standardized judgments against specific issues. In other words, the standard

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was the committees only safety tool in considering specific issues without falling into a case-by-case approach and, more importantly, getting entangled with the interests of particular groups or persons. In short, the QALY represented a form of preventing the committee from being sucked into the politics of singularity. Seen from this angle, this episode shows how the opposition between the politics of generalization and the politics of singularities prevents the proliferation of the social when already-gathered social ties (interest groups, etc.) are, as in the quote above, used to explain new collective claims (Latour 2005, 39). By weaving new claims into old social ties, contextualization is a key resource in political subtraction. But contextualization is also vital in shifting the frame of reference that allows for the proliferation of the social, as I suggested above. Is it then a question of good and bad contextualization? My proposal is linked to the understanding of context as a verb: an action performed on entities. As Strathern (2002) rightly suggests, instead of a tension between contextualization and decontextualization, the latter should be seen as a transposition of relationships. The recognition of emerging political concerns might be possible through shifting contextualization, that is to say, through displacing the frame of reference in and out of context. This is a proposal embedded in the conceptual vocabulary of STS: Latours (1999) analysis of Pasteurs experimental settings or Gomart and Hennions (1999) model of passings between arrangements of action. Entities gain (or lose) capacities as they shift in and out of sociomaterial ties. Thus, following Rabeharisoa (2008), I argued that the relationship between generalization and singularization is dynamic. The articles main contribution was to indicate that (and how) cases stories are fundamental textual resources to operate this dynamic. They express the unraveling of institutional ties and allude to the concrete uniqueness of persons. Through their openness and transparency, these accounts challenge already-gathered social, political, and technical ties (the status quo, in Hughes words). In so doing, they also enable the weaving of communal ties for excluded others within a politics of divergence. They are able to operate these contextual shifts because they allegorically gather in tension generalization and singularization. In this regard, they are machines of contextual displacement, not allowing for the gathering of old social ties and artfully dodging political calculus. They spark political imagination. STS is usually identified with the exploration of contingency and specificity and, as such, has been seen as a significant ally in politicizing the experience of marginalized others, most notably in the work of Star and her collaborators. Inspired by the work of Park and his politicomethodological

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investment on the marginal man, Stars interventions on the sociotechnical were sustained by utopian visions of the optimal world (Bowker and Star 1999, 302, 326). Like allegory, utopia deploys a displacement of context that attempts to undo old political ties. However, by engaging in the politics of singularities, STS scholars will not be able to speak to and intervene directly on the politics of standards as much as they appear to be increasingly required to do (Moreira, May, and Bond 2009). The relatedness of silences and unique situations is not ready-to-hand (Callon and Rabeharisoa 2004). To make singularities political requires shifts in and out of context that effectively break the links between specificity and generality. Restoring those links would do violence to the political work of claims to singularity. Gathering in tension singularity and generality is perhaps the best we can do, even if this threatens the direct relevance of STS to shaping technological democracies. Acknowledgements
The paper benefited from the helpful comments and suggestions of Michel Callon, Michaela Fay, Mathew Kearnes, John Law, Ingunn Moser, Vololona Rabeharisoa, Tim Rapley and two anonymous referees. I thank the School of Applied Social Sciences, Durham University for financially supporting Will Craige to collect and organise the media database from which the paper draws.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Durham University provided fund for the media database to be organised.

Notes
1. Pour constituer un syste ` me collectif [ . . . ] il ne suffit pas [ . . . ] dun principe abstrait, mathe matique, impersonnel et mort, mais il faut quelque chose de concret et de vivant, de personnel et dhistorique (Tarde 1893, 150). 2. The QALY is a technique for measuring the benefit obtained from medical interventions by giving a different weight on time in different health states. In this, a year of life expectancy in perfect health is worth 1, whereas a year of less than perfect health is worth less than 1. It is argued that QALYs provide a form of currency to assess the extent of the benefits gained from health care

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interventions, not only in terms of survival but more importantly in terms of the quality of the time survived. The QALYs only fully become useful when combined with the costs of providing the interventions, from which costutility ratios result. To calculate such ratios, it is necessary to model both the disease in question and the effects of treatments might have on its progression. This in turn is done through a Markov model. In these models, the aim is to calculate the accumulated effects of transition probabilities between different health states. If the average costs of different types of interventions are known and transition probabilities between health states with or without these drugs are also available, then it is possible to calculate the respective gain that will be achieved with varying use of resources over a period of time. In this, the QALY aims at standardizing the utilitythe gainderived from a scenario of resource utilization and to provide discrete values for health care buyers and decision makers. 3. The article draws from a database of media reports related to NICEs controversy on dementia drugs and the controversy, which is composed of 318 news items published between January 2005 and May 2008.

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Bio
Tiago Moreira, is Senior Lecturer in Sociology at Durham University. His research and publications have for the last decade been mainly concerned with understanding the role of science and technology in health care practice and organisation. Currently he is investigating three main areas: knowledge processes in health care rationing, the role of patient organisations in the knowledge society, and the relationship between ageing, technology and society.