Markus Idvall

Attitudes of Swedes to marginal donors and xenotransplantation

The aim of our survey was to capture the attitudes of Swedes to marginal donors and xenotransplantation. Modern biotechnology makes it possible to replace non-functioning organs, cells, and genes. Nonetheless, people may have reservations and fears about such treatments. With the survey, Attitudes of the General Public to Transplants, we have sought to expose the ambivalence that arises when medical possibilities are juxtaposed with ideas of risk. The design of the questionnaire originates from the interdisciplinary cooperation between ethnologists, medical scientists, and geneticists. By combining qualitative and quantitative methods, it is possible to illustrate the complexity that characterises people’s view of modern biomedicine. People’s reflections are based on a personal and situation bound morality, which does not necessarily coincide with what they generally consider as ethically justifiable.

Framing the public: the policy process around xenotransplantation in Latvia and Sweden 1970–2004

A crucial debate is under way concerning the publics participation in biotechnology decision-making processes. This study, concerning the policy process around xenotransplantation (XTP) in Latvia and Sweden in the period 1970–2004, focuses on how scientific experts and politicians view the public and the publics participation in the process of developing policy regarding XTP. Drawing on interviews with actors involved in XTP in each country, we analyse and explain the inclusion and exclusion of publics in policy decision-making processes. In particular, we highlight the significance of the role of scientists and politicians in generating discourses which exclude the public from participation in policy decision-making. Copyright , Beech Tree Publishing.

The xenotransplantation narratives of nine type 1 diabetic patients with renal failure

Abstract:  Within the research project ‘‘Treatment of Diabetes by Transplantation of Porcine Islets’’ that was run by the Swedish Xenoislet Transplantation Network between 1998 and 2003, a partner project called ‘‘Cultural Perspectives on Xenotransplantation’’ investigated attitudes toward xenotransplantation development among the patients and their relatives as well as the medical personnel at a transplantation clinic in Sweden. In‐depth interviews were done with 37 individuals: nurses, doctors, researchers, patients, and relatives. All interviews were taped and transcribed verbatim. In this presentation the interviews with the nine type 1 diabetic patients with renal failure that took part in the project are focused. The personal and embodied narratives of these nine patients illustrate the ambivalent situation of individuals who are both patients and (potential) experimental subjects simultaneously. Both as actual practice and as biomedical information xenotransplantation research triggers a certain kind of cultural identity of the chronically ill patients – an identity related to how the patients ‘‘translate’’ scientific information and, at the same time, counter risk and uncertainty as well as promises of remedy. A central dimension in this cultural identity is a positive but still reluctant embodied attitude toward what spearhead science can bring about.

Communicating with individuals receiving home mechanical ventilation: the experiences of key communication partners.

Abstract Purpose: The aim of the study was to explore the communication experiences of key communications partners (CPs) of individuals receiving home mechanical ventilation (HMV), with particular emphasis on the possibilities, difficulties and limitations CPs experienced in communication, possible support given to facilitate communication and exploring what made a skilled communicator. Method: A qualitative research design using interviews was used. The participants included 19 key CPs of individuals receiving HMV. Results: The analysis resulted in five themes: Encountering communication limitations, Functional communication strategies, Being a communication facilitator, Role insecurity and Emotional reactions and coping. The findings revealed that CPs needed to develop partly new reference frames for communication. In particular, participants emphasised the need to understand and interpret subtle details in the communicative interaction. Conclusions: The findings are discussed in the light of previous research, in particular an earlier study exploring another perspective; the ventilator-supported individuals’ experiences of communication. Issues relating to the educational needs of CPs of individuals receiving HMV are discussed. The results are intended to enhance understanding of the challenges that individuals receiving HMV and their CPs face with communication, which should be of relevance not only to speech therapists, but for all healthcare practitioners in the field of HMV. Implications for Rehabilitation Individuals receiving home mechanical ventilation (HMV) as well as their communication partners (CPs) face many challenges with communication. Skilled CPs adopt a variety of communication strategies and roles to support the communication of individuals receiving HMV and to enhance empowerment. It is important to promote care continuity, as experience is an important factor in being a skilled communicator. Speech therapists should play an active role in the management of individuals receiving HMV and their CP training.

The Phenomenon of Brain World : Neuroculture in the Making by Patients with Parkinson's Disease

The aim of this article is to explore how the phenomenon of brain world, as a symptom of a possible emerging neuroculture, is perceived and enacted by patients with Parkinson’s disease, who, in their daily life, are subjected to neuroscience, most often as chronically ill individuals hoping for a cure, but also in some instances as participants in clinical trials. The article is based on a multifaceted ethnographic material that maps the experiences of biomedical research among patients with Parkinson’s. The main body of material consists of interviews carried out in 2012 and 2015, and comprises 19 transcripts of recorded conversations, conducted in groups as well as individually. The article argues that the exposure of the patients to clinical neuroscience gives birth to neuroculture. A materialist-discursive phenomenon called brain world—perceptions and enactments of the brain—is problematized on the basis of how patients cope with and reflect on their chronic illness in everyday life situations and in confrontation with clinical neuroscience. The embodied experience of the illness operates as the route into the brain world and also becomes the ground for how this world is featured with specific properties. Brain world is in this respect a contradictory entity: both plastic and fragile, both accessible and too complex, both strange and known. Most of all, brain world, in the eyes of the patients, relates to a territory still dominated by neuroscientists. Idvall, Markus: “The Phenomenon of Brain World: Neuroculture in the Making by Patients with Parkinson’s Disease”, Culture Unbound, Volume 10, issue 1, 2018: 102–115. Published by Linköping University Electronic Press: http://www.cultureunbound.ep.liu.se

Cultural and ethical analysis of problem orientation in xenotransplantation development

Eingetragen unter Nr. 7031 in das VR Düsseldorf, 5. Mai 1989 Amtsgericht, Abt. 89 Unter Berücksichtigung der Satzungsänderung vom 8. April 1989, ebenfalls eingetragen unter Nr. 7031 in das VR, Düsseldorf Unter Berücksichtigung der Satzungsänderung vom 20. September 2010, ebenfalls eingetragen unter Nr. 7031 in das VR, Düsseldorf Unter Berücksichtigung der Satzungsänderung vom 15. September 2014, ebenfalls eingetragen unter Nr. 7031 in das VR, Düsseldorf Unter Berücksichtigung der Satzungsänderung vom 27. Januar 2015, ebenfalls eingetragen unter Nr. 7031 in das VR, Düsseldorf Unter Berücksichtigung der Satzungsänderung vom 25. April 2016 sowie der im schriftlichen Umlaufverfahren beschlossenen Satzungsänderung vom 4. August 2016, ebenfalls eingetragen unter Nr. 7031 in das VR, Düsseldorf Unter Berücksichtigung der Satzungsänderung vom 22. August 2019, ebenfalls eingetragen unter Nr. 7031 in das VR, Düsseldorf