In recent years there has been a growing interest in person-centred, 'living well' approaches to dementia, often taking the form of important efforts to engage people with dementia in a range of creative, arts-based interventions such as dance, drama, music, art and poetry. Such practices have been advanced as socially inclusive activities that help to affirm personhood and redress the biomedical focus on loss and deficit. However, in emphasizing more traditional forms of creativity associated with the arts, more mundane forms of creativity that emerge in everyday life have been overlooked, specifically with regard to how such creativity is used by people living with dementia and by their carers and family members as a way of negotiating changes in their everyday lives. In this paper, we propose a critical approach to understanding such forms of creativity in this context, comprised of six dimensions: everyday creativity; power relations; ways to operationalise creativity; sensory and affective experience; difference; and reciprocity. We point towards the potential of these dimensions to contribute to a reframing of debates around creativity and dementia.
Based on criticism of the “ethical, legal and social implications” (ELSI) paradigm, researchers in science and technology studies (STS) have begun to create and move into “post-ELSI” spaces. In this paper, we pool our experiences of working towards collaborative practices with colleagues in engineering and science disciplines in the field of synthetic biology. We identify a number of different roles that we have taken, been assumed to take, or have had foisted upon us as we have sought to develop post-ELSI practices. We argue that the post-ELSI situation is characterised by the demands placed on STS researchers and other social scientists to fluctuate between roles as contexts shift in terms of power relations, affective tenor, and across space and over time. This leads us to posit four orientations for post-ELSI collaborative practices that could help establish more fruitful negotiations around these roles.
In this paper we identify five rules of thumb for interdisciplinary collaboration across the natural and social sciences. We link these to efforts to move away from the 'ethical, legal and social issues' framework of interdisciplinarity and towards a post-ELSI collaborative space. It is in trying to open up such a space that we identify the need for: collaborative experimentation, taking risks, collaborative reflexivity, opening-up discussions of unshared goals and neighbourliness.
In this article, we evaluate a novel method for post-ELSI (ethical, legal and social implications) collaboration, drawing on ‘human practices' (HP) to develop a form of reflexive ethical equipment that we termed ‘sociotechnical circuits'. We draw on a case study of working collaboratively in the International Genetically Engineered Machine Competition (iGEM) and relate this to the parts-based agenda of synthetic biology. We use qualitative methods to explore the experience of undergraduate students in the Competition, focussing on the 2010 University of Sheffield team. We examine how teams work collaboratively across disciplines to produce novel microorganisms. The Competition involves a HP component and we examine the way in which this has been narrowly defined within the ELSI framework. We argue that this is a much impoverished style of HP when compared with its original articulation as the development of ‘ethical equipment'. Inspired by this more theoretically rich HP framework, we explore the relations established between team members and how these were shaped by the norms, materials and practices of the Competition. We highlight the importance of care in the context of post-ELSI collaborations and report on the implications of our case study for such efforts and for the relation of the social sciences to the life sciences more generally.
This article addresses the use of the polygraph, penile plethysmograph, and other practices for the management of sexual offenders as part of the ‘Containment Approach’, a strategy increasingly common in the United States which is, in part, being trialled in the United Kingdom. The polygraph has a tangled history with abnormal sexuality, as we describe in the context of homosexuality in the 1960s. We examine how these strategies target sex offenders as malleable in regard to sexual performances but also, through notions of risk management, paradoxically constitute offenders as fundamentally incurable and thus permanently risky. Using Foucault's notion of the ‘abnormal’, we investigate the implications of this risk management/ performance paradox. We conclude that it reveals a certain anxiety about the relationship between abnormal and normal sexual behaviour in contemporary sex‐offender management discourse, which can help explain the emergence of these practices.
This paper examines how the drive to include minority ethnic groups in biomedical research raises challenging questions for the governance of some biobanks. Using findings from a qualitative study with researchers working at 10 UK biobanks that have been designed to explore common complex diseases, our study highlights the potential discordance between the twin imperatives of ‘social inclusivity’ and ‘analytical acuity’. While the researchers interviewed were keen to include minority ethnic groups in their research, they were also concerned that this could have deleterious effects on the precision of their analyses. In our discussion of these findings we show that there remains considerable debate as to the impact of including participants from minority ethnic groups on analytical acuity. Nevertheless, a principle of justice requires that potential participants from all ethnic groups should be given the opportunity to participate in and benefit from biomedical research, and UK law requires public bodies (including research councils) to demonstrate that there is no unintentional or unjustifiable ‘racial’ discrimination in their activities. Researchers' concerns about analytical acuity could result in calls for study designs that examine every ‘different’ ethnic group, which would have consequences for the governance of some biobank studies and for efforts to challenge the discredited yet resilient idea that differences between ethnic groups are innate, essential and immutable.
In this article I outline an original creative method for qualitative research, namely the painting with data technique. This is a participatory methodology which brings creativity and participation through to the analytical phase of qualitative research. Crucially, I acknowledge but also challenge the dominant aesthetic that currently shapes qualitative research and renders life in a monochromatic palette. The painting with data method evidences an alternative aesthetic to the predominant one and I argue that we can understand this methodology by adapting Jennifer Mason’s concept of ‘layering’ to conceptualise how different aesthetics help us to see the different shapes, forms and moulds that make us, our relationships and our worlds. The process moves away from traditional ways of treating transcribed data, and prioritises addition above extraction; juxtaposition over thematisation; and collaging rather than ordering. This alternative aesthetic for qualitative research offers an evocative form and a conceptual schema through which to interpret the world, providing a route to novel insights, that enlivens the interpretative work of the analyst and offers opportunities to make and witness potent connections.
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