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    http://sth.sagepub.com/ Values

    Science, Technology & Human

    http://sth.sagepub.com/content/37/4/307The online version of this article can be found at:

    DOI: 10.1177/0162243911414921

    July 2011 2012 37: 307 originally published online 26Science Technology Human Values

    Tiago Moreiraand Out of Context

    Health Care Standards and the Politics of Singularities: Shifting In

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    Health CareStandards and thePolitics of Singularities:

    Shifting In andOut of Context

    Tiago Moreira1

    AbstractContext is a pivotal concept for social scientists in their attempt to weavesingularities or universals to moral codes and political orders. However, inthis, social scientists might be neglecting the ways in which individuals orgroups who are excluded from the collective production of knowledgewant to politicize their concerns also by claiming their uniqueness andsingularity. 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 tworelated ways within technical controversies. First, it expresses the unraveling of sociotechnical ties caused by institutional failure to take concerns intoaccount. Second, it expresses the concrete uniqueness of persons caught by

    1 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, USAEmail: [email protected]

    Science, Technology, & Human Values

    37(4) 307-331 The Author(s)

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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 howstandardsandcontexts arein a continuous and emerging interactive relationship (Timmermans and Berg 2003; Moreira 2005). In this article, I focus on a third type of relation-ship between standards and contextsthe catalyzing model in which thedeployment of a standard is seen as responsible for generating or acceleratingthe formation of new, local, differentiated singularities (Thevenot 1984,40). In line with this, Callon has argued that standardization in contemporarytechno-economic networks produces new forms of exclusion, where individ-uals or groups are locked out of the process of knowledge and technological production, mediation, and use and thus of participating in collective deci-sion making (Callon 2007). Drawing on Strathern, he sees this as a processof proliferation of the social in which new social identities and concernsare generated through self-description (2003). Importantly, he calls uponsocial scientists, and STS in particular, to assist those groups in the elabora-tion 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 associ-

    ated with the ability to amplify and generalize their concerns in appealing tothe common ground or common view (Aristotle 1984) that is seen tounderpin the gathering of people in movements, cities, nations, and so on.In this, context is key to a form of political mobilization and theconstruction 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, irreduciblesingularities, these persons or groups are unintelligible, unrelatable, and apolitical. However, as Rabeharisoa has recently argued, collectivesemerge because individuals who were not ensnared by the social link wantto argue for their belonging to a group and at the same time assert their singularities (2008, 3). The articulation of concerns and elaboration of acollective is structured by a dynamic relationship between generalizationand singularization, one equipped by the weaving of links and the demon-stration of commonalities and the other sustained by the unraveling of tiesand the expression of uniqueness.

    My interest in the politics of singularities is linked to the need tounderstand 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 fea-ture of the reports, arguments, and evidence deployed in objection to NICEsadvice 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 thesubjective, fuzzy, unmeasurable benefits from and the possible injuriousconsequences of not having access to dementia drugs, these stories resonatewith those analyzed by Hughes in her pioneering study News and the Human Interest Story (1940) in that the predicaments of particular individuals wereindirectly linked to the production of wider public issues and policy. Thelittleness of these little news wasan important, if not fundamental, aspectof 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 thepolitics of singularities within the dementia drugs controversy in tworelated 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 possi- bility 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 sugges-tion, which I will develop in the concluding section of the article, is that the predicaments experienced by actors wanting to politicize their claims tosingularity should serve as an object lesson on the mobilization of context in STS. By letting generalization and specificity be in dialecticin 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 FamiliarityIn the past decade, a variety of countries have implemented differentsystems of priority setting or explicit rationing in health care (Ham and Roberts 2003). Among these, the United Kingdom is usually held as a par-ticularly significant case because of how it has attempted to combine hightechnical standards of health technology assessment with procedures of deliberative democracy in the workings of the National Institute of ClinicalExcellence (NICE; now National Institute for Health and ClinicalExcellence). 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 (clinicalguidelines).

    Among these, TAs have been the object of consistent public attention asthey are seen to cause harm by barring vulnerable individuals fromaccessing health care. Since its creation, a variety of public controversieshave been sparked by NICEs guidance on treatments for conditions suchas 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 thatuses the Quality Adjusted Life Year (QALY) as a standardized metric for comparison across illnesses and technologies (Ashmore, Mulkay, and Pinch1989). 2 The case of dementia drugs is the ideal vehicle to understand these processes because the use of costutility analysis was fraught with uncertain-ties that enabled stakeholders to attempt to reframe the issue.

    Modeling Dementia Drugs

    Motivated by the view that there was emerging research concerning thecost-effectiveness of cholinesterase inhibitorsdrugs that prolong thehalf-life of acetylcholine in the brain so as to enhance learning and mem-orythat had not been taken in consideration in its previous assessment, NICE decided in January 2004 to initiate a TA of these therapies. In its firstassessment in 2001, NICE had recommended cholinesterase inhibitors for treatment of mild and moderate dementia on the NHS mainly on the basisof their clinical effectiveness as it considered that the available quality of

    life measures for dementia has not been validated and judgments on thisdomain remained uncertain. In setting the scope for what was to becomeTA111, NICE and the Department of Health contextualized the review bystating 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 treatmentsthat had been published since 2001 and to new research on the cost-effectiveness of these drugs. However, while the overall assessment for clinical effectiveness of cholinesterase inhibitors had remained virtually thesame after the publication of new researchthat these treatments have modesteffects on cognition and are less effective on global clinical measurestheview on the health economics front was shifting toward a view, where thesedrugs were regarded as cost-neutral at best or not cost-effective at all.

    It was against this backdrop that the Southampton Health TechnologyAssessment 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 thathad supported the 2001 evaluation, SHTAC researchers drew on the shift inthe way the economic value of these drugs were viewed by experts to pro- pose a break with the previous TA. While they agreed with the previousassessment that most quality of life instruments used in dementia are inad-equate and problematic, they suggested, based on a cross-sectional studyconducted in Canada, that it was possible to draw equivalences betweencognitive scores and other dimensions of quality of life to construct healthutilities. This allowed SHTAC to construct an economic model throughwhich 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 thequestion: can these treatments delay institutionalization? (see Figure 1).It thus measures the costs of maintaining individuals with dementia in thecommunity with and without treatment (plus cost of care in this health statefor State expenditure) against the cost of full-time care. To be able to con-struct 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 trialswith assumed changes in health utility scores. This led to setting thecost-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 inthe United Kingdom, the Alzheimers Society (AlzSoc), and by parts of theclinical constituency. They are underpinned by drawing on the familiaritythese actors claim to have with the condition and the effects of the drugs inquestion.

    Already in their own submission to NICE, the AlzSoc had produced analternative methodology for evaluating dementia drugs: a survey question-naire that focused on user-defined outcomes delivered to its members. In the

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    results of the questionnaire, the ability to maintain functional abilities of daily life and improvement in attitude and mood were considered moreimportant that the cognitive outcomes achieved by patients. Designing and conducting its own research in the wild (Callon 1999), the AlzSocemphasized that the maintenance of abilities and quality of life rather thancognitive 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

    Figure 1. TheSouthampton HealthTechnologyAssessment Centre (SHTAC) model.

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    quotes and stories from patients and carers about the effects of thesetreatments. In these stories, the importance of everyday life is presentthroughout. This statement from a carer used as epigraph to the submissionis an informative example:

    Within three days [of taking dementia drugs] hed calmed right down and bythe end of four weeks he was a completely different person. No longer incon-tinent, 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 chatabout every day affairsnot living on two different orbits. He has his senseof 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 clinicaltrials and in SHTACs construction of the QALY, carers evaluated effectsin 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 specificlives 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 Alz-Soc rearticulated the notion of value that is mobilized to evaluate healthtechnologies by calling upon the experience of patients and carers, as thosewho are familiar with the disease. According to the AlzSoc, NICEs gui-dance was right about the wrong kind of knowledge. NICE had takenknowledge built on research with a preference for the psychologists officeor the consultation room as experimental settings, and ignored the home as arelevant epistemic device.

    In this, the AlzSoc response to the draft guidance also alluded to the pos-sible consequences of withdrawing these treatments, on whatever basis, onthe lives of patients and carers. Such withdrawal, they argued, would dete-riorate the links between patients, carers, and these technologies, and havedetrimental 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 betreated 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 demen-tia was not worthy of diagnosis and patients were seen as senile and hiddenaway? (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 inmediating between an emerging research community, on the one hand, and policymakers and political constituencies, on the other, can be seen as anexample of the politicization of excluded others as discussed earlier inthe article. In their attempts to politicize Alzheimers, the AlzheimersAssociation drew on the reconceptualization of senile dementia as a

    disorder of the nervous system, which in itself was partially building onemergent biochemical models of neurological diseases such as Parkinsons.Such reframing of Alzheimers Disease meant not only that the conditioncould be understood through experimental, laboratory investigations butalso that it could potentially be manipulated therapeutically. This thera- peutic optimism allowed the Alzheimers Association to frame the issueof 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, accord-ing to the Alzheimers Association, left patients and carers isolated, carry-ing alone the burden and shame of the disease.

    That the Alzheimers Association was successful in this politicizationwas very much a contingent outcome underpinned by the National Instituteof Agings inability to otherwise construct a politically sustainable programof research. As an alternative to a broad aging research program, which suf-fered from lack of funds, little or no academic interest in the topic, a smallcadre of investigators, the absence of a compelling scientific story, thelack of scientific credibility, and inadequate resources and infrastructure(Khachaturian 2007), Alzheimers disease was to become the paradigmof 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 pathologi-cal aging (Holstein 2000). This meant that considerable public attention aswell as a program of research and an intensive reorganization of health careservices had Alzheimers disease as a focus during the 1980s and 1990s notonly in the United States but also in Europe, Australia, and Japan, to theextent that contemporary commentators voiced concerns about the possibleAlzheimerization of aging. This process gained a further impetus in 1997with the market release of cholinesterase inhibitors, and by the end of the1990s, a set of expertises, diagnostic standards, therapies, and services wereavailable to persons experiencing memory problems. For the AlzSoc, NICEs pessimist guidance undermined the very existence of this socio-technical 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 AlzSocsobjections to NICEs guidance is that they emphasized the technologicalmediations that enact a particular form of life. To make this argument, theydrew on effects and relationships that are best described as familiar, inthe sense that it is the proximity with the problem that provides them witha form of knowledge. They saw dementia drugs as partaking in the organi-zation 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 tospeak, and immersed in a myriad of social and technical relationships.To decontextualize those effects, the AlzSoc and clinicians appeared to besaying, is to do violence to the links that make them meaningful and powerful.

    The problem for NICEs opponents was finding a way to expresssuch fuzzy concepts to support their arguments in the public space. Thisdifficulty is understandable from the perspective of the social study of knowledge. Thevenot, in his conceptualization of regimes of engage-ment, argues that the regime of familiar engagement produces informationthat is not easily transportable. Concerned with the way persons accommo-date themselves to their environments through trial and error, the regime of familiar engagement deploys knowledge that is fragmentary and specificto 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 adequacyof a particular action or attachment is grounded in how the body of the person in question is comfortable with specific arrangement of thingsaround him or her. A minimum of coordination is required: there is no need to communicate to others the reasons why such arrangement is comfor-table. Thevenot further argues that if a situation arises in which such actionor 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 throughthe 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 bringfamiliar effects to bear in the public space, the AlzSoc and its allies encoun-tered this same problem: it was difficult to make common issues thatcould only be understood as specific to persons. However, rather thanfollowing the path envisioned by Thevenot, ALZSocs strategy of referringto the familiar appears then to be an indirect one. Presented with NICEs

    clear, finished account of the effects of dementia drugs, they were only ableto provide what Cooper and Law would call a proximal view of thesame issue (1995). Proximal knowledge deals in the continuous and theunfinished [and] manifests implication and complicity (Cooper and Law1995, 239). Proximal knowledge can only thus be indirectly expressed,through connotation rather than denotation, through allegory rather thananalogy (Law 2004).

    In suggesting this conceptual model, Law is also interested in under-

    standing the ways in which such alternative ways of enacting objects of knowledge can be made to count in the public space, how they fullydeploy 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 thatholds the gathering together. In this respect, allegory is integral to a concep-tualization 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 tothe 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 presentthe familiar engagements that were supported by dementia drugs and how their withdrawal would strike at the foundations of this sociotechnicalworld. But in what way are case stories an allegorical form of public, political expression? To be able to understand this it is necessary to focusmore intensely on the case story form.

    Case Stories between Generalization andSingularization

    In his seminal article News as a Form of Knowledge, Robert E. Park argued that news were an information format that particularly suited rapidlychanging societies by providing a form of social bonding that was linked toa specious present rather than a sense of common history or values.The transient and ephemeral character of news was, however, only to fulfillthis 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 towhat 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 emer-gence of tabloid newspapers in the United States coincided with the arrivalof 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 againstintellectual worries about tabloidization of the news, MacGill Hughessees 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 wereexcluded, 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] assumethe merits of the status quo, personal news challenge it (Hughes 1942).

    In a reworking of MacGill Hughes work, Fine and White further clarifyhow little news are able to challenge the status quo by pointing to the factthat littleness can be equated with the lack of institutional sponsorship(Fine and White 2002). This they link to the open character of human inter-est 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 unfin-ished event. This facilitates involvement by making it possible to imag-ine 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 ithuman in that it reports on a unique person entangled in a singular setof circumstances.

    Despite their attention to the aspects of the case story that enable thecreation of common concerns, Fine and White still do not elucidate howsuch unique, open, transparent stories enact such powerful effects. How cana singular, unrelated event be weaved into the collective? To answer thisquestion, 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 doesnot 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 whicheach positionspectator and unfortunateenters into a reciprocal, sym-metric picturing of each others feelings. In addition, the spectator is herself a composite, a reflexively produced figure of the interaction between anideal and an ordinary spectator, joining in its signification the seeminglyopposite qualities of the most precise individuality and the most extensivegeneralization (Smith in Boltanski 1999, 41). This dynamic between sin-gularization 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 imaginativemediation because its openness implies that it exhibits rather than specifiesmeaning, alludes rather than denotes. As such, it is an allegorical constructcreating the conditions under which the reader can recreate the case inimagination (Kemmis 1980, 127). The firing of the imagination is alsotriggered by its uniqueness, which social scientist tend to ignore in their accounts. However, in neglecting the expression of singularity in the casestory, they ignore how stories can be used to express the belittling, localiz-ing, excluding effects that come from institutional failure. In this, theuniqueness 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 paradoxicallyenable 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 UniquenessAs 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 drugson the NHS was the use of cases and human interest stories depictingthe lives of patients or families that had had access to the drugs before theguidance 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 intoaccount. Second, they expressed the concrete uniqueness of persons failed by a standardized, universal, and impersonalhealth care policy.Theexample 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 wifeMary 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 theGreat North Run in two hours 32 minutes.

    Its a tremendous benefit. We have had a real quality of life to enjoy. Heknows his five grandchildren, says Mrs Stevenson speaking from the RoyalCourts of Justice in London yesterday after the verdict upheld last yearsdecision 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-monthlycheck 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 onrunning.

    The story starts by presenting John Stevenson as an Alzheimers sufferer who despite his illness has been able, with the help of a cholinesterase inhi- bitor, 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 decisionto reject the claims for judicial review submitted by the drug manufacturersand the AlzSoc. This threat is reinforced by Mrs Stevensons assertion thatwithout having the medication I wouldnt be able to be here now. Therecourse to the first person singular is of key importance here: it expressessingularity. Read from this perspective, the information we are given aboutMr Stevenson gains retrospectively a new strength. The I in question belongs to a particular arrangement of people and thingsincludingdrugsthat 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 thatrelates to the concrete uniqueness of Mr Setevensons person. What is moreis that this uniqueness is endangered by a decision taken elsewhere, a deci-sion that precisely failed to take this uniqueness into account.

    A similar example of how uniqueness and unraveling of ties areconnected can be taken from the Daily Mail , which ran these case storiesas 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 thathe wont know much of anything by next spring, the doctor answered. Itwould be too lateour wedding was in July [ . . . ].

    Suddenly, he was no longer the one man in my life who Id always be ableto depend on: the doctor had told us that Dad was, in effect, slowly goingmad.

    It was then the late autumn of 1998 but Dads problems had started a longtime earlier. It is impossible to say exactly when his memory lapses stopped being something that his grandchildren giggled about and turned into some-thing more serious.

    The warning signs built up: there was an incident the Christmas beforewhen hed been on his way to spend the holiday season with my sister, whowas 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 differentairport in Denmark and thenno one is quite sure how this happenedgotinto a chauffeur-driven car that was due to pick up someone else. It was onlywhen 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 hisdog across the fields, oblivious when it started chasing sheep. I later learned that dogs owned by Alzheimers sufferers tend to go mad, toosometimes asa result of getting no food, or getting three meals at once. Pets lose their senseof belonging and become frantic, insecure and aggressive [ . . . ].

    My father was a former Army officer, solid, upright, decent, someoneI had counted on for love, advice and support. Now, as I watched him wavehis 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-likecondition and death, he did say that he would prescribe him the one drug thatseemed 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 myfather got better: he was never going to. But for the next 12 months or so, heenjoyed a more or less unbroken succession of good daysdays when hewas calm, dealing with his memory loss in a fatalistic way, rather than ragingso ferociously against the dying of the light [ . . . ].

    But Dad was one of the lucky ones. Last November the National Institutefor Health and Clinical Excellence (NICE) announced that Alzheimers suf-ferers will no longer be prescribed drugs such as Aricept when they are firstdiagnosed.

    Written by Rosie Boycott, the famous British feminist journalist, thestory tells of a series of incidents that allegorize Boycotts father cognitivedecline. 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 takecare of a pet, her counting on him for support. In this, Boycott builds a ten-sion between how her father used to behis uniquenessand his behavior at the time of dementia onset, which she interprets a common to allAlzheimers sufferers. He was no longer himself, she was looking at astranger. Such tension is somewhat resolved when Charles is given acholinesterase inhibitor: calmness and solidity returned to his person evenif 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 theone hand, it could be seen as a means to render NICEs decision understand-able: 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 theopponents of NICE saw in its guidance on dementia drugs. The inabilityto make sense of, to weave the decision into a recognizable commongood, to contextualize it, is key to the politicization of their concerns.This produces a moral parallel with the unraveling of social and technicalties that the decision produces: without the drugs, Boycotts story seemsto be telling us, persons will loose their uniqueness and become thedisease.

    In this story as in the previous one, the unintelligibility of NICEsdecision is similar to the obscure reasons that motivate Greek gods tochange the fortune of humans. As tragedies, they inspire pity and fearfrom readers (Park 1940) and inspire the social bond that excluded othersare claiming for themselves. However, alongside the imaginative generaliza-tion 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 HelenClark ( Daily Mail , February 28, 2007)

    I am joining with the Daily Mail to challenge the Government, whichI 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, thenHealth Secretary, promised to end the postcode lottery which had left NHStrusts 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 itwould approve these Alzheimers drugs which would transform so manylives. In March 2005, it slammed into reverse and effectively banned them on cost grounds. I put down an Early Day Motion in the Commons, con-demning this heartless decision.

    Now, NICE has decreed that they may be prescribed only to patients in themiddle stage of the disease (an irrational, cruel decision, since by then it isoften 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 lotteryand instead irrational, heartless decisions are enforced by the very

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    government that made such promises. This causes Clark to experienceanger instead of grief on the day of her mothers memorial service. Indeed,anger was the most recurrent emotional trope used by patients and carersinterviewed in support of challenges to NICEs guidance. Anger usuallyevokes loss of control. In this context, however, Clarks statement appearsto 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 outand join the Daily Mail and AlzSoc campaign against the government thatshe used to support. From this perspective, there is a symmetry between thegovernments betrayal of the public and Clarks betrayal of her partyallegiance. 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 thatsufferers 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 complexinteraction between politicization and depoliticization. On the one hand,stories gain political significance because they can display the consequencesof institutional failure, the breaking down of the familiar context. On theother hand, such display can only spark the imagination if uniqueness is care-fully crafted into the story. To do this, writers have to personalize theaccounts 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 ContextThe previous section explored the predicament experienced by actors want-ing to politicize claims through human interest stories in that to articulateuniqueness they are required to draw on shared meanings and commongrounds. In effect, they are required to contextualize in order to exhibit theunraveling of sociotechnical ties and allude to their concrete uniqueness as persons. This means that the politics of singularities works in a dynamicrelationship with the politics of generalization. Persons or groups locked outof the collective production of evidence capture the public imagination byshifting 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 exten-sive generalization and the most precise individuality.

    If the articulation of concerns and elaboration of collectives are struc-tured by dynamic displacements between generalization and singulariza-tion, figuring the role of the social scientist in this proliferation of thesocial is not straightforward. Earlier, I suggested that social scientists areadequately equipped to weave and make visible the links that sustainseemingly free-floating, isolated entities, and that this has sustained the twomain approaches to health care standards: the domestication and the socio-technical models. These approaches actively change the frame of referencefor entities that have been carved out of context. The catalyzing modelthat has informed this article suggests that these displacementsin and outof contextare essential to the politicization of excluded groups. Our atten-tion should focus thus on understanding the conditions underpinning theachievement of contextual displacement. Again, the case of the dementiadrugs controversy is informative here.

    In January 2006, after much public debate, NICEs Appraisals Committeechanged 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 thataccess to drugs should be decided by the score obtained by patients in the MiniMental State Examination (MMSE), a widely used screening tool for demen-tia. This was followed by further controversy (Moreira 2010), which eventu-ally led to a number of appeals. In the appeal hearings, patient advocatesargued that NICE had failed to take into account how using a QALYapproach 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 digdeeper in fairness to all other patient groups and all other appraisals? We havedone in excess of 100 appraisals now on different diseases [ . . . ] The commit-tee consider it very important to make these judgments on as even a playingfield as possible although that is not without cognisance of the fact that therewill be particular issues around each disease group. We need a fair assess-ment tool

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

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    was the committees only safety tool in considering specific issues withoutfalling into a case-by-case approach and, more importantly, gettingentangled with the interests of particular groups or persons. In short, theQALY represented a form of preventing the committee from being sucked into the politics of singularity. Seen from this angle, this episode shows howthe opposition between the politics of generalization and the politics of sin-gularities prevents the proliferation of the social when already-gathered social ties (interest groups, etc.) are, as in the quote above, used to explainnew 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 thatallows for the proliferation of the social, as I suggested above. Is it then aquestion 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 betweencontextualization and decontextualization, the latter should be seen as atransposition of relationships. The recognition of emerging politicalconcerns 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 maincontribution 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. Throughtheir 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 thesecontextual shifts because they allegorically gather in tension generalizationand singularization. In this regard, they are machines of contextual displa-cement , 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 speci-ficity and, as such, has been seen as a significant ally in politicizing theexperience 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 sociotechnicalwere sustained by utopian visions of the optimal world (Bowker and Star 1999, 302, 326). Like allegory, utopia deploys a displacement of context thatattempts to undo old political ties. However, by engaging in the politics of singularities,STS scholarswill not beable to speak toand intervene directly onthe politics of standards as much as they appear to be increasingly required todo (Moreira, May, and Bond 2009). The relatedness of silences and uniquesituations is not ready-to-hand (Callon and Rabeharisoa 2004). To makesingularities political requires shifts in and out of context that effectively break the links between specificity and generality. Restoring those linkswould do violence to the political work of claims to singularity. Gatheringin tension singularity and generality is perhaps the best we can do, even if this threatens the direct relevance of STS to shaping technologicaldemocracies.

    AcknowledgementsThe 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 SocialSciences, Durham University for financially supporting Will Craige to collect and organise the media database from which the paper draws.

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

    FundingThe 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.

    Notes1. Pour constituer un systeme collectif [ . . . ] il ne suffit pas [ . . . ] dun principe

    abstrait, mathematique, impersonnel et mort, mais il faut quelque chose deconcret et de vivant, de personnel et dhistorique (Tarde 1893, 150).

    2. The QALY is a technique for measuring the benefit obtained from medical inter-ventions 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 thequality of the time survived. The QALYs only fully become useful when com- bined with the costs of providing the interventions, from which costutility ratiosresult. To calculate such ratios, it is necessary to model both the disease inquestion and the effects of treatments might have on its progression. This in turnis done through a Markov model. In these models, the aim is to calculate theaccumulated 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 stan-dardizing the utilitythe gainderived from a scenario of resource utilizationand to provide discrete values for health care buyers and decision makers.

    3. The article draws from a database of media reports related to NICEs controversyon dementia drugs and the controversy, which is composed of 318 news items published between January 2005 and May 2008.

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    BioTiago Moreira , is Senior Lecturer in Sociology at Durham University. His researchand publications have for the last decade been mainly concerned with understandingthe role of science and technology in health care practice and organisation. Currentlyhe 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.

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