“…For this, STS scholars’ understanding of public and their values regarding power struggles between actors, as they set boundaries and facilitate intersections (Dussauge et al . , Montgomery ) are of importance to this paper. Rather than being self‐evident or universal, values are theorised here as things made in practice (Dussauge et al .…”
Section: Introductionmentioning
confidence: 99%
“…Rather than being self‐evident or universal, values are theorised here as things made in practice (Dussauge et al . , Leonelli ) which are meaningful only within the networks in which they are enacted (West and Davis ). While for Marres (), public are ‘ungraspable’ and abstract entities, they are nevertheless formed by actors who gather together in ‘democratic collectives’ (Latour ) to evoke pressure and negotiate their participation in boundary‐making practices (Jasanoff and Kim ).…”
We draw on findings from qualitative interviews with health data researchers, GPs and citizens who opted out from NHS England's care.data programme to explore controversies and negotiations around data sharing in the NHS. Drawing on theoretical perspectives from science and technology studies, we show that the new socio‐technical, ethical and economic arrangements were resisted not only on the basis of individual autonomy and protection from exploitation, but also as a collective effort to protect NHS services and patient data. We argue that the resulting opt‐outs were a call for more personal control over data use. This was not because these citizens placed their personal interests above those of society. It was because they resisted proposed arrangements by networks of stakeholders, not seen as legitimate, to control flows and benefits of NHS patient data. Approaching informed consent this way helps us to explore resistance as a collective action for influencing the direction of such big data programmes towards the preservation of public access to healthcare as well as the distribution of ethical decision‐making between independent, trustworthy institutions and individual citizens.
“…For this, STS scholars’ understanding of public and their values regarding power struggles between actors, as they set boundaries and facilitate intersections (Dussauge et al . , Montgomery ) are of importance to this paper. Rather than being self‐evident or universal, values are theorised here as things made in practice (Dussauge et al .…”
Section: Introductionmentioning
confidence: 99%
“…Rather than being self‐evident or universal, values are theorised here as things made in practice (Dussauge et al . , Leonelli ) which are meaningful only within the networks in which they are enacted (West and Davis ). While for Marres (), public are ‘ungraspable’ and abstract entities, they are nevertheless formed by actors who gather together in ‘democratic collectives’ (Latour ) to evoke pressure and negotiate their participation in boundary‐making practices (Jasanoff and Kim ).…”
We draw on findings from qualitative interviews with health data researchers, GPs and citizens who opted out from NHS England's care.data programme to explore controversies and negotiations around data sharing in the NHS. Drawing on theoretical perspectives from science and technology studies, we show that the new socio‐technical, ethical and economic arrangements were resisted not only on the basis of individual autonomy and protection from exploitation, but also as a collective effort to protect NHS services and patient data. We argue that the resulting opt‐outs were a call for more personal control over data use. This was not because these citizens placed their personal interests above those of society. It was because they resisted proposed arrangements by networks of stakeholders, not seen as legitimate, to control flows and benefits of NHS patient data. Approaching informed consent this way helps us to explore resistance as a collective action for influencing the direction of such big data programmes towards the preservation of public access to healthcare as well as the distribution of ethical decision‐making between independent, trustworthy institutions and individual citizens.
“…First, we describe how a particular configuration of knowledge‐values‐emotions is enacted and deployed (as per Dussauge et al . ), attending to the inclusions and exclusions that make up a particular site of medicine (Hillman et al . , Silverman ).…”
Section: Background and Literature Reviewmentioning
confidence: 99%
“…This article does three things. First, we describe how a particular configuration of knowledge-values-emotions is enacted and deployed (as per Dussauge et al 2015), attending to the inclusions and exclusions that make up a particular site of medicine (Hillman et al 2009, Silverman 1987. Second, using pragmatic sociology, we examine how work in this site is brought into relation with modes of coordination through the formats of botheredness and risk acceptance.…”
Section: Background and Literature Reviewmentioning
This article illustrates what pragmatic sociology refers to as investments in form, by examining the formats created and used by a group of surgeons to determine when elective surgery for pelvic floor disorders could be responsibly undertaken. Drawing upon ethnographic observations of surgical consultations at an academic medical centre in Canada, we show how two specific formats - that the patient is sufficiently bothered and the patient accepts the risks of surgery - allow for justifiable action in conditions of uncertainty and contingency and in light of the demands of dominant imperatives in medicine and health care, especially evidence-based medicine (EBM). We argue that an analytic of justification is necessary for understanding when and how surgery is offered and elected for, and for considering how surgical consultations might be improved.
This paper proposes a ‘valuographic’ approach to diagnosis, exploring how values and valuation practices are implicated in the contested diagnostic category of idiopathic short stature (ISS). ISS describes children who are ‘abnormally’ short but do not have any other detectable pathology. In the USA growth‐promoting hormone therapy has been approved for ISS children, since 2003. However, no other jurisdiction has approved this treatment and the value of ISS as a diagnostic category remains disputed among healthcare professionals. Drawing on qualitative interviews with paediatric endocrinologists in the UK and the US, this study presents a historical snapshot illustrating how the problematisation of ISS as a diagnosis involved multiple registers of value including epistemic, economic and moral calculations of worth. Contestation of the diagnosis was not just about what counts but about what ought to be counted, as respondents’ accounts of ISS gave differential weight to a range of types of evidence and methods of assessment. Ultimately what was at stake was not just the value of increased height for short patients, but what it meant to properly practice paediatric endocrinology. Consideration is then given to how a valuographic approach can be applied to sociological studies of diagnosis more broadly.
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