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Medical need, ethical scepticism: Clashing views on the use of fœtuses in Parkinson’s disease research
Department of Arts and Cultural Sciences, Lund University, Sweden.ORCID iD: 0000-0003-3571-4620
2012 (English)In: The atomized body: The cultural life of stem cells, genes and neurons / [ed] Liljefors, Max; Lundin, Susanne & Wiszmeg, Andréa, Nordic Academic Press, 2012, 1, p. 65-82Chapter in book (Other academic)
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.

Place, publisher, year, edition, pages
Nordic Academic Press, 2012, 1. p. 65-82
National Category
Ethnology
Identifiers
URN: urn:nbn:se:mau:diva-54389ISBN: 978-91-87121-92-0 (print)OAI: oai:DiVA.org:mau-54389DiVA, id: diva2:1687231
Available from: 2022-08-15 Created: 2022-08-15 Last updated: 2022-08-15Bibliographically approved
In thesis
1. Cells in Culture, cells in Suspense.: Practices of Cultural Production in Foetal Cell Research
Open this publication in new window or tab >>Cells in Culture, cells in Suspense.: Practices of Cultural Production in Foetal Cell Research
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Parkinson’s disease is a neurodegenerative affliction to whichresearchers have long striven to find a cure. The human embryois a source of vital cells used in regenerative medicine, as well as apowerful symbol of life. Using foetal cells from aborted embryosfor transplantation to the brains of Parkinson patients is an avenuethat has been explored by neuroscientistson and off for the lastthirty years. This ethnological compilation thesis follows a nationalbranch of a foetal cell transplantation trial through successes as wellas challenges in processing foetal material into an effective, transplantablecell suspension. The cell suspension is conceptualized as abio-object, and explored as something that produces new knowledge,emotions and logistical and ethical negotiations. These products arebeyond the scope of the trial and biomedical research in general, butthey do nonetheless interact with and affect society at large.New biomedical inventions and forms of therapies transgress thelimits of life and death and the boundaries of individuals, as well asbetween species. Such cultural reordering challenges researchers,health care professionals as well patients on a daily basis. Exploringthe intersection between instruction and practice, nature and cultureas well as between science and ritual, this thesis contributes to abroader understanding of cultural and material conditions ofknowledge production. It also offers a methodological elaborationof how a diffractive approach may be fruitful in ethnographicresearch, when trying to reconcile epistemological differences incross-disciplinary endeavours.The thesis is itself a product of multidisciplinary cooperation, inwhich the researcher is affiliated with the milieus the Departmentof Art and Cultural Sciences and the Basal Ganglia DisordersLinnaeus Consortium (Bagadilico) of the Medical Faculty, bothat Lund University, as well as the Learning and Media Technology(LET) Studio at Gothenburg University.

Place, publisher, year, edition, pages
Lund University Open Access, 2019. p. 210
Series
Lund Studies in Arts and Cultural Sciences, ISSN 2001-7529, E-ISSN 2001-7510 ; 21
National Category
Ethnology
Identifiers
urn:nbn:se:mau:diva-54390 (URN)978-91-983690-8-3 (ISBN)
Public defence
(English)
Opponent
Available from: 2022-08-15 Created: 2022-08-15 Last updated: 2023-01-10Bibliographically approved

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