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Together with the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen (UMG), the Institute of Sociology at Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) has been researching what makes people decide not to become organ donors and what role public discussion plays in their decisions. In their research the project team interviewed 60 people from all over Germany who were sceptical about organ donation. They also analysed 80 posters from organ donation campaigns.
According to a survey by the Federal Centre for Health Education, the majority of people in Germany have a positive opinion of organ donation after death. However, only a minority of them document that they are willing to donate their organs in writing, such as in an organ donor card. The social reasons for this discrepancy have received little attention from research until now. In the media and in public debate, lack of donor organs is usually attributed to a lack of willingness to donate among the general public. ‘To overcome reluctance and scepticism, campaigns appeal to people to be willing to register as organ donors,’ says Prof. Dr. Frank Adloff from the Institute of Sociology at FAU. ‘It is often suspected that the main reasons for refusing are a lack of information or mistrust of the transplant system, but this has not previously been verified.’
Together with Prof. Dr. Silke Schicktanz and Solveig Lena Hansen from the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen, Prof. Dr. Frank Adloff and Dr. Larissa Pfaller have conducted research into motivations for deciding for or against organ donation after death. In their research project ‘I would prefer not to. Organ donation between unease and criticism. A sociological and ethical analysis’, funded by the German Research Foundation (DFG), they investigated the reasons for critical opinions expressed in interviews and group discussions. The researchers also studied the moral messages put across in campaigns by health organisations. So far they have interviewed 60 participants and analysed 83 posters.
Suggestions made in campaigns make freedom to decide more difficult
A closer look at the campaigns shows that although everyone is free to decide for themselves, it is not made easy for people to say no to organ donation. ‘Organ donation is presented as socially desirable behaviour,’ Silke Schicktanz says. ‘It is suggested that deciding not to donate one’s organs is the easy option, while organ donors are taking responsibility for their families and easing the suffering of people who are waiting for an organ. Worries about donation are not addressed at all, resulting in people feeling that they are subtly being pressured by campaigns, rather than being well informed or motivated to consider the issue more carefully.’ Furthermore, according to Professor Schicktanz, the information given is sometimes incorrect. For example, slogans like ‘You can have everything from me; can I have everything from you?’ suggest that a person’s opinion about organ donation affects the likelihood of them receiving a donor organ in an emergency.
Decision not to donate often based on cultural factors
The interviews and discussions carried out in the project show that a person’s wish not to donate their organs cannot be reduced to simply a lack of information or mistrust. Instead, scepticism towards organ donation can be linked to deeply held cultural beliefs about death and physicality. For example, many people do not believe that brain death – a requirement for organ donation – can be considered true death. In addition, many of those interviewed saw removing organs, even after death, as a violation of physical integrity. ‘The unease associated with such ideas cannot simply be dismissed as irrational,’ Silke Schicktanz says. ‘Campaigns and public discussions do not address these beliefs, even though protecting one’s own life and a desire for one’s body to be treated with respect after death are good reasons on which to base a decision – even a decision against organ donation.’
Public discussion on organ donation
The results of the project will be discussed at the conference ‘Yes? No? Maybe? Discourse on and criticism of organ donation’ at the Institute of Sociology on 18 and 19 July 2016. As part of this conference, the project team invite all those who are interested to a public panel discussion entitled ‘Organ donation between education and advertising – a talk about campaigns, media and criticism’. The discussion will involve a dialogue between specialists who represent different perspectives and the general public, and will look at suitable methods for communicating with the public about organ donation. The panel will include Silvia Matthies (journalist), Birgit Blome (head of communication, German Organ Transplantation Foundation), Prof. Dr. Andrea Marlen Esser (philosopher, Friedrich Schiller University Jena) and Prof. Dr. Kai-Uwe Eckardt (head of Transplant Centre, Universitätsklinikum Erlangen). The discussion will be moderated by Prof. Dr. Silke Schicktanz (University Medical Center Göttingen).
When and where?
The panel discussion will be held on Monday 18 July from 6 p.m. to 7.30 p.m. in room 2.012 in the old University Library building, Universitätsstraße 4, Erlangen. The event is free of charge. As space is limited, please send an e-mail to larissa.pfaller@fau.de to register for the event.
Further information:
Dr. Larissa Pfaller
Phone: +49 9131 8526311
larissa.pfaller@fau.de
https://www.fau.eu/2016/07/13/news/research/organ-donation-yes-no-maybe/
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