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  • 201.
    Wiszmeg, Andréa
    Department of Arts and Cultural Sciences, Lund University, Sweden.
    Medical need, ethical scepticism: Clashing views on the use of fœtuses in Parkinson’s disease research2012Inngår i: The atomized body: The cultural life of stem cells, genes and neurons / [ed] Liljefors, Max; Lundin, Susanne & Wiszmeg, Andréa, Nordic Academic Press, 2012, 1, s. 65-82Kapittel i bok, del av antologi (Annet vitenskapelig)
    Abstract [en]

    ‘And if it’s going to die, that little foetus, then it doesn’t matter to me at what stage.’(Patient on the use of foetal neural cells versus the use of embryonic stem cells)

    This quote neatly captures a central difference between patients and non-affected respondentsin a focus group study of attitudes towards foetal neural cell research and therapy forParkinson’s disease. The patients of the study displayed a pragmatism verging on unconcernin the ethical issues concerning the foetus and its human status; this to a considerably higherdegree than the non-affected respondents, who, on the contrary, seemed quite preoccupied bysuch issues.Parkinson’s disease is a severe neurological disease with symptoms such as rigidity, slowmovement, tremors and sometimes depression and dementia. The aim of this essay is toinvestigate how patients with this disease and non-affected individuals reason about researchthat uses foetal neural cells. The focus is on their thoughts about what is ethically defensible inthe search for treatments for Parkinson’s disease.As such, it falls within the framework of focus group interviews conducted in Sweden as partof the EU project TRANSEURO (<http://www.transeuro.org.uk/>).1 One of the key findingsof the Swedish focus group study is that the participants’ ethical attitudes closely correlate totheir relation to the disease. This means that whether you are afflicted or in other respectsaffected by the disease or not will be highly relevant for your ethical stance. I will argue herethat individual circumstances also largely determine the motives and effects of ethicalreflection. I also elaborate on the role of gut feeling in ethics (see Lakoff & Johnson 1999;Lundin, this volume) and how it relates to what I would term anthropocentric concerns.Ulrich Beck’s concept of individual ethical reflexivity in late modernity (1992) serves herenot only as a theoretical point of departure, but also as a point of discussion itself. This latteris a consequence of the results of the study confirming some general trends that Beck pointsto, but also revising some of them in addressing the issue that individual reflexivity needs tobe related to one’s experiences of, in this case, Parkinson’s disease. My argument that one’srelation to the disease fundamentally affects one’s motives and effects of ethical reflectionserves to nuance the generalizability of Beck’s theory.

  • 202.
    Wiszmeg, Andréa
    et al.
    Malmö universitet, Fakulteten för hälsa och samhälle (HS), Institutionen för socialt arbete (SA). Lund University; University of Copenhagen, Denmark.
    Lundin, Susanne
    Lund University; Wallenberg Research Centre At Stellenbosch University, South Africa.
    Mäkitalo, Åsa
    University of Gothenburg.
    Widner, Håkan
    Lund University.
    Hansson, Kristofer
    Malmö universitet, Fakulteten för hälsa och samhälle (HS), Institutionen för socialt arbete (SA).
    Transforming trash to treasure: Cultural ambiguity in foetal cell research2021Inngår i: Philosophy Ethics and Humanities in Medicine, E-ISSN 1747-5341, Vol. 16, artikkel-id 6Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background

    Rich in different kind of potent cells, embryos are used in modern regenerative medicine and research. Neurobiologists today are pushing the boundaries for what can be done with embryos existing in the transitory margins of medicine. Therefore, there is a growing need to develop conceptual frameworks for interpreting the transformative cultural, biological and technical processes involving these aborted, donated and marginal embryos. This article is a contribution to this development of frameworks.

    Methods

    This article examines different emotional, cognitive and discursive strategies used by neurobiologists in a foetal cell transplantation trial in Parkinson’s disease research, using cells harvested from aborted embryos. Two interviews were analysed in the light of former observations in the processing laboratories, using the anthropologist Mary Douglas’s concept of pollution behaviour and the linguist, philosopher, psychoanalyst and feminist Julia Kristeva’s concept of the abjective to explain and make sense of the findings.

    Results

    The findings indicate that the labour performed by the researchers in the trial work involves transforming the foetal material practically, as well as culturally, from trash to treasure. The transformation process contains different phases, and in the interview material we observed that the foetal material or cells were considered objects, subjects or rejected as abject by the researchers handling them, depending on what phase of process or practice they referred to or had experience of. As demonstrated in the analysis, it is the human origin of the cell that makes it abjective and activates pollution discourse, when the researchers talk of their practice.

    Conclusions

    The marginal and ambiguous status of the embryo that emerges in the accounts turns the scientists handling foetal cells into liminal characters in modern medicine. Focusing on how practical as well as emotional and cultural strategies and rationalizations of the researchers emerge in interview accounts, this study adds insights on the rationale of practically procuring, transforming and utilizing the foetal material to the already existing studies focused on the donations. We also discuss why the use and refinement of a tissue, around which there is practical consensus but cultural ambiguity, deserves further investigation.

    Fulltekst (pdf)
    fulltext
  • 203.
    Wiszmeg, Andréa
    et al.
    Department of Arts and Cultural Sciences, Lund University, Sweden.
    Lundin, Susanne
    Department of Arts and Cultural Sciences, Lund University, Sweden.
    Torkelson, Eva
    Department of Psychology, Lund University, Sweden.
    Hagen, Niclas
    Department of Arts and Cultural Sciences, Lund University, Sweden.
    Lundberg, Cecilia
    CNS Gene Therapy, Lund University, Sweden.
    Difficult Questions and Ambivalent Answers on Genetic Testing2012Inngår i: Culture Unbound. Journal of Current Cultural Research, ISSN 2000-1525, E-ISSN 2000-1525, Vol. 4, nr 3, s. 463-480Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    A qualitative pilot study on the attitudes of some citizens in southern Sweden toward predictive genetic testing – and a quantitative nation wide opinion poll targeting the same issues, was initiated by the Cultural Scientific Research Team of BAGADILICO. The latter is an international biomedical research environment on neurological disease at Lund University. The data of the two studies crystallized through analysis into themes around which the informants’ personal negotiations of opinions and emotions in relation to the topic centred: Concept of Risk,’Relations and Moral Multi-layers, Worry, Agency and Autonomy, Authority, and Rationality versus Emotion. The studies indicate that even groups of people that beforehand are non-engaged in the issue, harbour complex and ambivalent emotions and opinions toward questions like this. A certain kind of situation bound pragmatism that with difficulty could be shown by quantitative methods alone emerges. This confirms our belief that methodological consideration of combining quantitative and qualitative methods is crucial for gaining a more complex representation of attitudes, as well as for problematizing the idea of a unified public open to inquiry.

    Fulltekst (pdf)
    fulltext
  • 204.
    Wästerfors, David
    et al.
    Lunds universitet.
    Hansson, Kristofer
    Lunds universitet.
    Taking ownership of gaming and disability2017Inngår i: Journal of Youth Studies, ISSN 1367-6261, E-ISSN 1469-9680, Vol. 20, nr 9, s. 1143-1160Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Gaming among young people with disabilities is often understood within a habilitation frame, as if video and computer games primarily should help to exercise and ‘improve’. Little is known about how these games are used within a private frame, and how young people with disabilities operate their gaming as concrete persons rather than as treatment-receiving clients. Through the use of stories, descriptions, and demonstrations from Swedish youth and young adults with disabilities (muscle diseases, cerebral palsy, and Asperger’s syndrome), we explore these gamers’ practical maneuvers, verbal accounts, and biographical-narrative concerns in relation to digital games. As they strive to bypass or overcome digital inaccessibility, various challenges find their way into their gaming practices, not only to complicate, distract, or disturb them but also to give them extra meaning. Gamer–game identifications turn multifaceted, with disabilities serving as paths both around and into the games’ ‘magical circles’. We suggest partly new concepts – beyond a habilitation frame – to capture how young people struggle to take ownership of gaming and disability: engrossment maintenance, vicarious gamers and biographical as well as situational refuge.

  • 205. Runnel, Pille ()
    Pruulmann-Vengerfeldt, Pille ()
    Malmö universitet, Data Society. Malmö universitet, Fakulteten för kultur och samhälle (KS), Institutionen för konst, kultur och kommunikation (K3). Malmö University.
    Aljas, Agnes ()
    Handenawer, Marta ()
    Fabuel, Maria ()
    Garcia, Pau ()
    Number fascination: A reflection on data and measuring2022Kunstnerisk output (Ogranskad)
    Abstract [en]

    Number fascinationA reflection on data and measuring

    An exhibition is open from 3rd of May until 2nd of October 2022.

    Our lives are full of numbers and metrics. The minutes you need to boil an egg, the temperature outside, the hours until the end of the workday, the hourly pay rate of your job, the recommended amount of salt in your daily diet, the number of likes on your latest social media post. Numbers help to make sense of what we think, feel and know. Everything can be measured, once we learn how to count.

    Since the 16th century, Europeans have become increasingly obsessed with collecting data. The ability to describe the world quantitatively gave way to modern science and the hope that we could understand how things are.

    When you count things, you probably feel achievement and success: the number of followers you have on social media, the clicks on your latest post, the number of steps you have taken this day. But to know what decisions you need to make, good metrics and a clear understanding of what is being measured are needed. If you can’t measure it, you can’t manage it. Or can you?

    This exhibition is part of Me-Mind, a Creative Europe project that aims to measure and visualise the effect of culture. Throughout the process, we’ve come up with great questions about what measuring and counting mean, their challenges and the effect they can have on people. We’re sharing these thoughts in the form of an exhibition.

    Please ask yourself about your relationship with data as you are going through the sections of the exhibition. And when you reach the last one, where we present the results of our investigation, please ask questions and be critical of what we have developed. All data sets should be questioned by as many minds as possible.

2345 201 - 205 of 205
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