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Challenges of Biomedicine – Socio-Cultural Contexts, European Governance, and Bioethics

Final Online Publication, edited by Ulrike Felt and Maximilian Fochler

Focus 3: Bioethical and Public Evaluations of Biomedicine

QUICKLINKS: Aim / Findings / References / Scientific Output

Aim


This focus combined bioethical considerations on the relevance of body-concepts, body images and religious arguments with the analyses of the socio-empirical studies of the focus group discussions and some more general meta-ethical reflections. The overall aim of this research was to identify relevant and partly new tools for the ethical evaluation of biomedicine. In the working process, the focus of the workpackage was therefore threefold, firstly, on the relevance of body concepts and body images for bioethical considerations, secondly, the relevance of religion for bioethics and thirdly, the methodological opportunities and problems that arise from the use of socio-empirical data in bioethical debates.



Findings



The Relevance of Body Concepts and Body Images for Bioethical Considerations



Concepts of the body encompass theoretical, conceptual and anthropological assumptions about the role of the body for human identity, human agency, individuality and morality and in which concepts and categories the human body can be described and classified. Additionally, the images people (such as patients) have of their bodies are influenced by body-concepts but also by normative assumptions such as body ideals of the cultural and social contexts.
However, in modern academic bioethics and biopolitical discourses, it seems to be a widely shared conviction that not one particular concept of the human body can be prescribed as the normative valid concept of a body. Since we are faced with a plurality of religious and cultural traditions, regulations of the life sciences should not be committed to one concept of the human body. In the tradition of political liberalism the biopolitical discourse therefore tries to find ways of regulating biotechnologies that are independent from specific ontological or metaphysical assumptions about the human body. Moreover, several liberal bioethical argumentations are presupposing that no specific emphasis is given to the concept of the body at all. But in fact, many authors in bioethics refer to medical “facts” and empirical description that indirectly or sometimes directly presuppose a specific body concept, often a rather materialistic, fragmentary and mechanistic concept of the body (as corpus) that is very prominent in biomedicine since the end of the 19th century.

We investigated in this part of the project to what extent this approach of neutrality is mirrored in public attitudes of European citizens and which ethical impacts this may have. The main result is in much more disagreement with the above mentioned common sense assumption than could be expected. It seems that in the public debate very strong substantial assumptions concerning the human body are made. Patients and lay people value the human body in a mechanic metaphoric way, people make use of dualistic or monistic mind-body-concepts, people are referring to human bodies in technological metaphors or in metaphors of naturalness and embodied soul etc. We actually found a number of interrelations between our participants’ moral attitudes to organ donation and certain cultural images and concepts of the self and the body. Interestingly, there seem two main, prima facie incompatible positions to be found in various European countries. On the one hand, arguments for maximal bodily self-determination are often articulated in terms of ownership of the body and consequently express a tendency to see it as some piece of private property. Particularly prominent in this context are body concepts which frame the body as machine-like composed of single elements that can be replaced by functional equivalents. While in the tradition of political philosophy (esp. John Locke) the notion of ownership of the human body is only used to exclude others (the state, slave-holders) from the use of one’s body, in the focus group discussions a much more robust meaning of ‘ownership’ can be found. Limits to bodily self-determination, on the other hand, are often expressed against the background of the more or less articulate thought that the human being and its body are part of some higher realm, be it divine creation or a natural order of things.

However, not only in the discourse within the focus groups a lot of substantial presumptions are made, but also in the official regulatory discourse. For example, the acceptance of the brain death criterion as death definition, as agreed upon in most European countries, very often refers to specific materialistic or dualistic body concepts. Additionally, on the European level and in many national regulations organ trade is assessed as illegitimate especially when the concept of the body as individual property is rejected. Thus, the arguments for the acceptance of the brain death criterion as human death and the various opt-in and opt-out solution for post-mortem organ donation we found in different European countries, mirror specific anthropological and ontological meanings of the body. The combination of opt-in in organ donation with the brain death criterion respects much more the self-determination over various body concepts and allows the co-existence of plural concepts than for example the legal opt-out solutions do.
From a normative point of view, we have to stress the difficulty of formulating a (common) shared normative concept of the human body. The whole tradition of human rights and human dignity necessarily seems to presuppose that it is morally legitimate to lead the own life in different ways and have different attitudes towards the own body. But doesn’t the very concept of rights and dignity presuppose a kind of intimate relationship between the person and its body that is not compatible with all kind of instrumental valuation of the body? If that is the case the idea of neutrality concerning body concepts may be misguiding. At least the starting assumptions of political liberalism would be in need of revision and new ways of dealing with anthropological disagreement would be needed. Perhaps it shows that political liberalism is not the adequate framework for bioethical debates?

Similar considerations are relevant for body images. In the traditional bioethical discourse, there has been not very much attention to the relevance of body images for bioethical questions. At the same time, it seems that body images are of crucial relevance for a lot of aspects of our dealing with health technologies, of the values of dealing with our body etc. Body images are influencing our concepts of personal identity, they are motivations for the development and use of some technologies (e.g. technologies of enhancing our body etc.) In the social sciences, some research is done for the investigation of existing body images, e.g. the relevance of body images in psychological development of young people is discussed to some extent. Since body images are – at least to some extent – produced or at least influenced by human action, the question can be raised, how to deal with body images in a responsible way. It’s to some extent surprising, however, that this issue is neither present in the public discourse on the regulation of the life sciences nor in the academic bioethical debate.
Referring to results of our focus groups in different European countries, we investigated to which extent body images are present in the argumentations of lay people and patients. Of course, this raises important methodological questions, we are aware of. But nevertheless, we identified body images as relevant aspects of the self-interpretation of people and according to our analysis, these body images are guiding the value preferences and the decisions of the people in medical context. Because of a missing methodology to weigh those findings for the moral evaluation of the life sciences we want to stress the future need of developing such tools. The evaluation is a really substantial task of the bioethical discourse and the recent deficiency in this field of bioethics should be therefore given more intellectual resources and investments.


Religious Elements in Decision-Making on Organ Transplantation

Further, research was done on the function of religious elements (like thoughts, ideas, convictions and perceptions) for individual argumentation and decision-making regarding organ transplantation. The focus groups with affected and non-affected persons in four countries (Austria, Cyprus, Germany and Sweden) served as an empirical basis.
As today’s medical techniques make treatment and changes of the body possible in a far reaching way, a growing number of persons are confronted with issues in transplantation medicine. These issues often have an existential dimension, and could lead to a challenge of life view and perspective of relation to inner and outward life. What function do religious convictions have in a person’s decision-making on organ transplantation?

The research focussed on the following aspects: methodological considerations concerning this topic, a definition of religion, official theological statements on transplantation medicine in Christianity and Buddhism are presented, and compared with the view presented by the participants view on ‘official religion/Church’ and expressions of how they include or exclude personal religious faith in decision making. This is further linked to what is said by other participants in the groups about ‘believers’ or ‘religious people’. Finally, the discrepancies and overlaps between participants’ usage of religious elements and the role of religious elements in an ethical discourse are discussed.

As to the findings regarding the general question on what role religious elements play in decisions on issues concerning the own body and future, official theological documents and statements seem to have very limited influence on convictions for believers and non-believers alike. It is further shown that many non-religious participants with a positive approach to organ donation express a narrow view of rationality (as excluding emotions and expressions of religious faith/conviction) and hence arguing that believers are irrational. If a religious person does not reject transplantation medicine this is by others regarded as an exception, and even thanks to individual positive impact. Contrary to this, believers arguing in favour of transplantation based on their religious position don’t make a distinction between ‘ratio’ and ‘emotio’, but rather use them as parallel phenomena equally important for reaching a decision they regard as ethically justified. Thus they don’t necessarily say that emotion is an element within rationality, but tend to keep them separate. Excluding religion is then regarded as a problematic and reductionist perspective. There is thus a kind of discrepancy between views of religious and non-religious persons on each other and of both group’s perspectives on medicine that does not mirror official theological statements, since they are positive to transplantation medicine.

On a very general level, religion as such is identified as an important factor, for the ways how arguments are put and contrary positions are classified. While in some countries the public prejudice exists that religious people are more critical of biomedicine, we observed a rather different argumentation structure. Religion as such seems to be a very relevant factor, but it is unclear, whether specific religions are so important. On a normative level this questions the role of specific churches or the “representatives” of specific believes or whether a justified relation of believers and non-believers must be respected.


The Use of Socio-Empirical Facts in Bioethics


The final, overall question of this focus was the methodological reflection on the use of socio-empirical data about attitudes, behaviours and values of people for bioethical argumentation. The explicit discussion on this topic in bioethics is relatively new. The aim was thus also to summarise and systemise the recent debate and analyse it with respect to our own interdisciplinary research at the intersection between ethics and social science. The idea of a so-called ‘empirical ethics’ was very intensively discussed in the last decade, even though the term ‘empirical ethics’ is not a very fruitful notion, since ethics is as such not an empirical, but a normative discipline. The term ‘empirically informed ethics’ (Musschenga, 2005) seems to be much more productive.

Overall, we observed that this discourse is still very much concentrated on the debate about the ‘naturalistic fallacy’. The idea of a naturalistic fallacy claims that there is no way of an inductive justification of moral norms by reference to natural facts. In our case this means, it has no logical consequence for the ethical justification that some people are of the opinion that something is morally right or wrong. The moral evaluation of new technologies should not rely on the opinion of a majority or the public in general but on the quality arguments for or against those technologies. The majority have, of course, in a democratic state the power to decide about the political decision-making, but that doesn’t mean that the opinion of the people is morally right. At the same time, nearly no concept of ethics holds the position that the recent moral convictions of the people (as citizens) are completely unimportant for moral reasoning.

In this project, we investigated the literature about the methodological use of socio-empirical data. A first result is that it seems to be quite unclear in bioethics to which purpose socio-empirical data are used. Are bioethicists interested in the fact that people have specific moral opinions? Is it of ethical interest whether or not a majority shares specific norms and values? From an ethical point of view, this would be only interesting if the fact that a majority holds a specific opinion would have some kind of justificatory significance. Concerning the adequate sociological methodology, this would mean that more quantitative instruments should be used. With regard to normative bioethical considerations, the differences in moral attitudes are particularly striking, as being affected (e.g. as patient or relative) proved to be an important factor for the conceptualization and assignment of moral or political rights and responsibilities. Of course, there is no direct way of deriving normative conclusions from these factual moral views and attitudes. Nevertheless, several prominent approaches in moral and political philosophy acknowledge their relevance and point out ways of taking them into account on the level of normative reflection. For example Kantianism emphasizes to the inherent worth of the autonomous capacities of rational beings. Therefore for moral considerations the actual will of autonomous beings is an important source. And for Preference Utilitarianism, affected peoples’ voices gain a special import, too, because in order to “give equal weight in our moral deliberations to the like interests of all those affected by our actions” (Singer, 1979: 19), we have to know what exactly these interests are. So several authors are emphasizing the need of participation but it’s disputable to which extent there is a right to participate. What does it especially mean for collective decision-making? How is the relation between direct participation of the citizen and the role of political institutions?
A very different kind of interest would be the interest in specific arguments that are present in the public. In this regard, the sociological methodology should be a qualitative one: One wants to get information about arguments that are used in the discussion of moral legitimations of the life sciences. Therefore, for bioethical experts it would be interesting to know what kind of arguments can be found in public discussion. Thus, for the bioethical discourse it would be important to take all these arguments used in the public into account and to try to elaborate them as good as possible and to prove their justification as cautiously as possible. In order to do that, bioethics should have access to the variety of public discourses.

Nevertheless, a systematic investigation of specific methodology for common research between bioethicists and social scientists is missing to a wide extent. Even though it is often claimed that common research is needed, the methodologies for this research are very much underdeveloped. Such a joined methodology would need a clear understanding of the division of labour between the researchers participating in the joint project, a clear understanding of the research questions both sides are interested in, and a clear knowledge of the used methodological approaches. Up to now this remains a desideratum and should be part of future research in this field.



References



  • Musschenga, A.W (2005): Empirical Ethics: Contextsensitivity or Contextuality. The Journal of Medicine and Philosophy, 30(5): 467-490.
  • Singer, P. (1979): Practical Ethics. Cambridge et al.: Cambridge University Press.


For the Deliverable 4 report on preliminary results, please contact:
Marcus Düwell, M.Duwell@uu.nl


Scientific Output

 

cob Complex Usage of Religion in Discussions on Organ Transplantation

 

cob An Interdisciplinary Investigation into Body Images in a European Context of New Biomedical Technologies

 

cob Social Sciences, Social theory and Ethics

 

cob Needs, Capacities and Morality. Over Problems of the Liberal to Deal with the Life Sciences

 

cob Interdisciplinarity, applied ethics and social science research.

 

cob Ethics, technology and empirical science. A love triangle?

 

cob Why the way we consider the body matters - Reflections on four bioethical dimensions on the human body

 

cob Public Moralities Concerning Donation and Disposition of Organs: Results from a Cross-European Study

 

cob A human being is not a car” – Public attitudes towards organ donation and underlying concepts of the human body

 

cob One man’s trash is another man’s treasure”? Moral subtexts of organ shortage in the recent public debate


Cite as: Challenges of Biomedicine. Final Online Publication, accessed at: [Mainpagepage: www.univie.ac.at/virusss/cobpublication]

This Final Online Publication is Deliverable No5, the comprised Short Report on Consequences and Recommendations Deliverable No6 to the Contract of the FP6 Project “Challenges of Biomedicine” (Project no. SAS6-CT-2003-510238)