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Introduction to the Project

This interdisciplinary project aims at exploring the interrelation between socio-cultural conditions and ethical and legal arguments of medical research and practice. It poses the question to what extent concepts of identity on the cultural, bioethical and political level are influenced by biomedicine and, conversely, shape and regulate biomedical practices themselves

The socio-cultural background of modern biomedicine was examined in a comparative analysis of qualitative empirical data gathered in different European countries: Germany, France, the Netherlands, Sweden, Austria and Cyprus. Moreover, perspectives from Latvia and Great Britain were taken into account selectively. The emphasis of the project lies on the question how laypeople and patients view modern medicine and live with it. The interactions and interdependencies between medicine and culture were analysed along two main comparative axes. On a first level the countries involved were compared to trace different cultural approaches. Secondly, two different medical technologies, organ transplantation and postnatal genetic testing, were used as comparative examples. These two technologies raise different ethical and social problems and hence challenges for governance.

On this basis, the CoB project developed conclusions and recommendations for the academic context as well as for European and national policy makers. These address questions of European harmonisation, citizen participation and governance as well as bioethical issues.        

 

Thematic objectives

  • Qualitative comparative research on different socio-culturally framed ways of dealing with modern biomedicine in selected European countries
  • Investigation on how members of the public assess the impact of modern biomedical technologies on their body, identity, ways of knowing and social relations
  • Analysis of how European citizens reflect on the socio-political consequences of modern biomedical technologies, different modes of governance as well as opportunities of public participation
  • Investigation of the role of cultural concepts like identity and bodily integrity in the present bioethical discourse
  • Reflection and evaluation of the consequences of the cultural plurality of moral conceptions on the debate on European bioethics
  • Recommendations for the development of ethical regulations and possibilities of governing research and practise in the field of medicine and life sciences

 

Methodological and theoretical objectives

  • Advancement of interdisciplinary research at the interface of bioethics, social studies of science and medical anthropology
  • Advancement of qualitative comparative methods for investigating patients’ and laypeople’s attitudes towards questions of biomedicine in an international and interdisciplinary research setting
  • Development of key concepts for an intercultural bioethical discourse
  • Establishment and structuring of a European network for the exploration of biomedicine from an ethical and sociological point of view

 

Contractors involved

  • Administrative co-ordinator as of the 1st April 2005: University of Vienna, Austria, Department of Social Studies of Science, Prof. Dr. Ulrike Felt (AT-UV) [www.univie.ac.at/virusss]
  • Humboldt-University at Berlin, Germany, Department of European Ethnology, Prof. Dr. Stefan Beck (DE-UBER) [http://www2.rz.hu-berlin.de/ethno]
  • University of Lund, Sweden, Centre for Theology and Religious Study, (Dr. Helena Röcklinsberg [www.teol.lu.se] (SE-ULUND/TH) & Department. of European Ethnology, Prof. Dr. Susanne Lundin (SE-ULUND/IE) [www.lu.se/o.o.i.s/1442]
  • Makarios III Medical Centre, Cyprus, Nicosia Dept. of Clinical Genetics, Dr Violetta Christophidou Anastasiadou (CY-MMC) [www.cing.ac.cy/cing.html]
  • University of Utrecht, the Netherlands, Institute for Ethics, Prof. Dr. Marcus Düwell (NL-UU) [www.phil.uu.nl/en]
  • University of Latvia, Latvia, Riga Dept. of Sociology, Dr. Aivita Putnina (LV-UL) [www.policy.hu/putnina]
  • University of Nancy, France, Research Group on Information, Communication and Propaganda, Dr. Anne Masseran (FR-UN) [www.univ-nancy2.fr]
  • Contractor as of the 1st of January 2006: University of Leeds, UK, Institute of Health Sciences and Public Health Research, Prof. Dr. Darren Shickle (UNIVLEEDS) [www.leeds.ac.uk/hsphr]
  • Contractor as of the 1st of January 2006: University of Goettingen, Germany, Department of Medical Ethics and History of Medicine, Prof. Dr. Silke Schicktanz (UKG-GOE) [www.egm.med.uni-goettingen.de]

 

 

National Contexts: Investigating the State of the Art

The State of the Art Reports produced in CoB’s first data recording phase aimed at providing comprehensive information on the status of the political, legal, and socio-economic context of and the political, academic and media debate on biomedicine and especially transplantation medicine and post-natal genetic testing in different European national contexts. Reports were written in those member countries where further empirical research was to be conducted in following working steps, which were Austria, Cyprus, Germany, France, the Netherlands, and Sweden.

The reports covered a timeframe of ten years (1995-2005). They mainly based on desk based studies of official statements, laws, relevant academic and non-academic literature, grey publications, web sites and media debates. As accessibility to information especially on socio-economic aspects of organ transplantation and post-natal genetic testing, as well as on soft laws and informal practices was rather restricted, also additional expert interviews were done.

 

Structure of the State of the Art Reports

All reports produced follow a standardised structure:

  • Section 1 deals with the legal and regulatory framework of biomedicine, comprising not only an overview of the “official” laws and regulations, but also of more informal ways of regulation. The historical background of recent legislation was taken into account to better understand the motivations behind the respective political decisions.
  • Section 2 describes the institutional structure in the field of governance of biomedicine. It includes an organigram covering the responsibilities, competences and functions in the institutional context of the establishment and regulation of biomedical research and technology.
  • Section 3 identifies the main actors in the field of governance of biomedicine, such as politicians, scientists, the public, ethics committees, stakeholders, physician groups, patient or disabled groups. Special further focuses are placed on commercial companies as well as NGOs and their impact on biomedical research.
  • Section 4 is concerned with the academic debate on biomedicine including ethics and social sciences. It provides information on the most important topics, positions and the nature of the debate, the disciplines involved and the relation of the academic to the public discourse. Another focus is on a description of the biomedical research landscape in the respective countries, considering major research programs and projects, sources and channels of research funding.
  • Section 5 covers the media and the public discourse on biomedicine. It gives an overview on the main topics in the current public debate and important discourse events such as public scandals or debates. Where applicable, also fiction literature or film is taken into account.
  • Section 6 focuses on issues of public participation. It gives an overview on the participatory culture in the respective countries in general – e.g. possibilities of referenda in the constitution, institutionalised ways of public participation – and concentrates on the specific institutions and ways of participation in the governance of biomedicine.
  • Section 7 is a structured bibliography on the different thematic sections, including relevant literature, grey publications and, where possible, links to important internet sources.

Following this structure, each report comprises between 20 and 30 pages. The State of the Art Reports produced proved to be a good starting point for later analytic work. However, it also became evident in further more specialised, especially comparative analysis, that additional background investigation on specific issues was necessary.

For further information on the Austrian State of the Art Report, please contact:
Ulrike.Felt@univie.ac.at

For further information on the Cypriot State of the Art Report, please contact:

Violetta Anastasiadou: vanast(at)cing.ac.cy

For further information on the French State of the Art Report, please contact:
Anne.Masseran(at)univ-nancy2.fr

For further information on the German State of the Art Report, please contact:
Silke.Schicktanz(at)medizin.uni-goettingen.de

For further information on the Dutch State of the Art Report, please contact:
Marcus Düwell; M.Duwell@uu.nl

For further information on the Swedish State of the Art Report, please contact:
Helena.Rocklinsberg@teol.lu.se

 

 

Data & Methods: Making Public Approaches Visible

CoB’s data gathering phase further comprised the production of socio-empirical data on public approaches to the two biomedical technologies at stake, organ transplantation and post-natal genetic testing in different European countries. To make these approaches accessible, the consortium decided on the use of two well established methods of opinion oriented qualitative data analysis, focus group research as well as ethnographic interviews in different national contexts.

 

 

Focus Groups: Design, Implementation and Local Analysis

Why Focus Groups?

In focus group research, groups of participants are selected and assembled by researchers in order to discuss on topics framed by the researchers from their personal point of view. The general purpose of focus groups is to grasp respondents’ attitudes, experiences and re-actions on pre-selected issues. Frequently mentioned advantages of this procedure are the access to a relatively large amount of information in a relatively short period of time. Further, especially the interactivity of the focus group setting and the opportunity to collectively debate on and mutually validate statements and attitudes expressed is considered as suitable to gain insights in culturally shared, collectivised norms and values. Today, focus group research is successfully employed both in opinion research as well as in participative technology assessment.

Hence focus groups were considered as meeting the project’s aim to gain insights in lay people’s personal approaches to biomedical technologies and – through the interactive setting – also to access public issues and debates specific to a certain socio-cultural context.    

 

Focus Group Design

As the design of the focus groups was considered constitutive for the later success of the project’s comparative research, the consortium engaged in extensive exchange and discussion on the organisation and design of the focus groups. In total, 24 focus group discussions were conducted in six of the partner countries – Austria, Cyprus, France, Germany, the Netherlands, and Sweden.

In each of these six countries, two focus groups each on organ transplantation and post natal genetic testing were to be organised. As affectedness was expected to be a key factor in individuals’ attitudes towards a technology, each biotechnology was discussed in separate groups of either affected or non-affected (“lay”) participants. In total, there was one affected and one lay group on organ transplantation, and one affected and on lay groups on genetic testing per country. A broad definition of affectedness was used as a selection criterion: experience with the technology as a patient or a person closely linked to a patient. Non-affectedness in turn was defined as having no contact with the technology on a personal or kinship level.

Each group was about two hours in length and consisted of six to ten participants. Although the composition of the groups did not aim at socio-demographic representativeness, special emphasis was placed on a balanced group composition with regard to gender, age, religious background and education in order to represent a broad variety of perspectives and support a lively and productive discussion.

A common interview guideline was used in all countries, which was considered to lead the discussion from the level of the general individual assessment of the respective technology over personal decision scenarios high-lightening ethically controversial aspects of the technology to questions of public information, governance as well as citizen participation.

 

Focus Group Recruitment & Implementation

For the recruitment of the participants, a combination of different strategies was used. The main recruitment method was the dissemination of flyers at suitable public locations. Selectively also bulk mail was used, calls for participation were initiated on homepages and in city magazines and more direct ways of contacting like the snowball system were employed.

Standardised information sheets on the project and the focus groups, pre-questionnaires collecting socio-demographic data as well as informed consent forms designed to meet all ethical standards were handed out. Each participant was compensated for travelling and engagement in a reasonable amount of money.

The focus groups were carried out in university buildings, facilitated by one or two project researchers and a technical assistant responsible for the recording and transcription. The group discussions were transcribed locally under consideration of the anonymisation of all participants and then translated into English, in order to make the data accessible for each research partner of the consortium.

Problems encountered in the conduction of the focus groups research primarily resulted from difficulties with particular target groups in the recruitment process. With some national differences, especially affected people in the field of genetic testing were problematic to reach by means of the recruitment strategies agreed in advance. This was mainly due to a certain reluctance to openly discuss a hot topic like genetic risk in a semi-public setting. Further also the recruitment of members of ethnic and religious minorities proved to be quite difficult. As a reason for this, in background interviews the rather impersonal way of recruitment lacking any personal contact to spokesmen/“gatekeepers” of certain communities was criticised by community representatives.

 

Local Analysis of the Focus Groups

As a first analytic step to structure the focus group data and thus create a basis for further comparative research, the consortium decided on a local analysis of the focus group data. Local findings and research hypotheses of possible interest for further more fined grained analysis were to be described in so called Local Reports.

The consortium decided on using the qualitative data analysis software Atlas.ti to structure the data along a set of predefined codes, developed on the basis of main research questions of the project. The use of one shared software, data-base and code set was expected to facilitate the interpretation process and guarantee comparability and exchangeability of analytic codes between the partners. Further, the topically assigned codes should allow to define a common structure for the Local Reports as well as to trace certain discussion issues across different national focus groups in later comparative research.    

 

The Local Reports

On the basis of the shared coding process, a standardised table of contents was defined as guideline for the six reports produced by the partners from Austria, Cyprus, France, Germany, the Netherlands, and Sweden. Each report lined out local findings and working hypotheses for further research steps. They are structured in two main parts. In a first part the context of local focus groups is discussed, comprising

  • the local recruitment process,
  • the selection process of participants for the local focus groups, denials and quits,
  • the focus group setting,
  • anonymised profiles of the participants,
  • and the group dynamics.

In the  second part, participants’ main lines of argumentation are analysed. Referring to the predefined set of codes, five topical foci were agreed as structuring elements:

  • the participants’ approach to the two biomedical technologies discussed,
  • personal decision making and coping,
  • the human body as a cultural entity,
  • organisation, governance and participation, and
  • gender, religion and cultural values.

Special interpretative emphasis was placed on the relation between the participants’ arguments and the specific local socio-cultural and political background. Working hypotheses on possible correlations between local analytic findings and the specific backgrounds are lined out at the end of each sub-chapter.

In a final conclusion each report provides a summary of the most important findings and lines out working hypotheses of further research interest. The Local Reports produced comprise between 70 and 150 pages.

The main challenge of the local analysis and reporting phase was the development of a shared analytic approach between research partners coming from very different disciplinary backgrounds and thus having quite varying levels of experience in structuring and interpreting qualitative data.

A further challenge was to identify “local specificities” on the level of a local analysis. In essence, many specificities of the respective socio-cultural backgrounds only became evident from a comparative angle.

For further information on the Austrian Local Report, please contact:
Ulrike.Felt(at)univie.ac.at 

For further information on the Cypriot Local Report, please contact:
Violetta Anastasiadou: vanast(at)cing.ac.cy

For further information on the French Local Report, please contact:
Anne.Masseran(at)univ-nancy2.fr

For further information on the German Local Report, please contact:
Silke.Schicktanz(at)medizin.uni-goettingen.de

For further information on the Dutch Local Report, please contact:
Marcus Düwell; M.Duwell(at)uu.nl

For further information on the Swedish Local Report, please contact:
Susanne.Lundin(at)etn.lu.se

 

 

Ethnographic Interviews: Design, Implementation and Local Analysis

To complement and expand the project’s data collection via focus group research, selective ethnographic interviews were conducted. Their aim was to gain deeper insights in people’s preferences, decisions and representations of coming to terms with biomedicine. Thirty in-depth ethnographic interviews were conducted, ten in Cyprus, Sweden and Germany respectively.

 

Preparation, Design and Implementation

Earlier project research served as starting point for the organisation and research design of the ethnographic interviews. The interviews were conducted by the same researchers who had been co-moderators of the focus group discussions in Cyprus, Sweden and Germany. This was essential for the further ethnographic work performed with regard to the recruitment of interviewees, the development of a trustful research relationships, but also the further design of interview questions on basis of preliminary findings of the focus groups. For their in-depth interviews, the partners involved could draw on extensive knowledge gained in previous ethnographic work and research concerning biomedical issues in their respective country of investigation.

Joint preparatory work and intense discussions of the focus group material provided the backdrop on which common guidelines for interview questions were developed. Using software for computer-mediated collaborative work, the draft questionnaires were intensively discussed, tested and refined accordingly. While most questions referred to general, cross-national issues, a number of specific questions were included concerning local public debates or problem constellations that were significant for particular socio-cultural contexts.

Almost all interviewees had taken part in the preceding focus group discussions. In each country, five interviews dealt with issues of genetic testing and five with organ transplantation. For reasons of feasibility and to allow for more narratives based in real experiences, slightly more interviews were performed with affected respondents than with those having no personal experience with the technology under study. The interviews lasted about one to one and half hours and were usually carried out in the private environment of the interviewees. The respective interviewers supplemented the interview data with concomitant field notes. Transcripts of the audio-recorded interviews were translated into English and extensively annotated regarding original language connotations and local contexts to allow a comparative analysis.

 

Local Interpretation of the Ethnographic Interviews

The local interpretation of the ethnographic interviews followed of a bottom-up approach of analysis. Not a pre-defined set of codes was applied to the interviews, but content related focal points were developed in the analysis of the empirical material. The analysis was characterized by an ongoing interplay between empirical material and descriptive codes on the one hand, and the successive development of more abstract or theoretical concepts on the other hand. The qualitative data analysis software Atlas.ti was used to structure, summarize and analyze the interviews as well as to provide a platform to exchange material and progress of interpretation between the relevant project partners. In close collaboration in all working steps the local proceedings of analysis were continuously complemented by extensive exchange between the partners. This was of key importance to define common categories for primary analysis, and to discuss preliminary findings, emerging topics in the material, and questions of comparability.

 

Report on the Ethnographic Interviews

The results of the ethnographic interview research were compiled in a comprehensive report. Local findings were presented in separate “national/local” chapters, but followed a common structure with respect to six central topics, namely

  • the assessment of biomedicine and its application (incl. positions on the notion of medical development/progress)
  • the framework of political regulation in the field of biomedicine regarding the organisation of health care, ideas of regulation and visions of adequate participation
  • notions of health and illness, more precisely coping strategies, social implications of disease and understandings of causes of health problems
  • views, concepts and understandings of the body and the bodily consequences of genetic testing and organ transplantation
  • experiences and evaluations of doctor-patient interactions
  • aspects of religion and gender brought up in the interviews

Overall, the incorporation of the focus group research into the research design of the ethnographic interviews worked out very well. While the focus group data rather allowed insights in shared understandings, degrees of agreement and group dynamics of positioning, the interview material facilitated insight in individual narratives, interpretations, and reflections in a biographical mode. Therefore, underlying rationales (styles of reasoning) and values (culturally patterned moral practices) as well as narratives and representations of individual practices and coping strategies became apparent during the interviews.

An important and highly challenging characteristic of the interview research in the framework of the project was the collective process of ethnographic work, more precisely, the close collaboration of three local ethnographic teams, working in different socio-cultural contexts. For ethnography, this still is a very uncommon mode of work and thus the participating project partners had to venture into uncharted territory to some extent. The collaborative work of bringing the three localities of the interview research and local analyses together provided a good starting point for a comparative analysis in the subsequent project phases.

For further information on the Report on the Ethnographic Interviews, please contact:

Stefan.Beck(at)rz.hu-berlin.de

http://www.csal.de/

Biomedical Technologies and Cultural Contexts: Investigating the Multiplicity of Relations and Encounters

Building on the local findings, a more fine grained and comparative analysis was done in three sub-projects with different topical foci: Focus 1 was focussed on concepts of medicalisation and geneticisation, focus 2 dealt with public understanding of science, governance and participation, while focus 3 was dedicated to bringing together bioethical reflections with public moral claims concerning the body, identity and religious beliefs.

The agenda for the subprojects was developed in defining publication projects for specific questions related to the foci. Defining publication projects instead of a common homogeneous output allowed different teams to approach the central research questions in different ways. This seemed important in order to give space to the different disciplinary traditions as well as methodological approaches. However, while allowing for some heterogeneity in the concrete realisations of the analysis, communication within and across the different foci was assured in order to allow for the development of policy relevant recommendations:

There were internal meetings of project partners collaborating on joint publications. Further, draft versions of all articles were circulated regularly via the project’s mailing list and discussed in plenum at the project meetings. As Deliverable 4 to the contract, reports on the preliminary results were sent to the Commission. They gave insight into the main research questions of the respective workpackages, sketched the concrete work performed, drew first conclusions, and closed with annexes containing the full versions of the papers in their current status. Finally, research results were presented and discussed at the final conference in Vienna.

Given the depth of the material and the time constraints, it was decided that comparative efforts within the work packages could not cover all project countries, but had to be restricted to certain constellations depending on the precise research question. The selections of countries to be compared followed well reflected methodical considerations However, the choice of national data was coordinated between partners and foci, so that each data set became topic of analysis at least in one study.

Further,– though basically all papers are structured around a comparative approach – the objects of comparative interest were not limited to the initial focus on cross-national differences and commonalities: Firstly, technology was added as an axis for comparison, as people’s approach to the two technologies investigated – organ transplantation and post-natal genetic testing – had high impact both on their moral-ethical reflections as well as on their visions of and trust in the technology and its governance. Further, also the self conceptualisation of people’s affectedness and of their body turned out to be extremely context sensitive with regard to the respective biomedical embedding. And finally, also an in depth reflection of the very different analytic approaches in this project – ranging from anthropology, over science studies to bioethics – proved of comparative interest.

 

 

Focus 1

Public Approaches to (Bio)Medicalisation and Geneticisation

 

Articles

  • K. Amelang, S. Beck, V. Anastasiadou-Christophidou, C. Constantinou, A. Johansson & S. Lundin. 2011. Learning to Eat Strawberries in a Disciplined Way: Normalization Practices Following Organ Transplantati in. Ethnologia Europaea, Vol. 41, Nr. 2, pp. 54-70.  
  • A. Putnina. 2011. Chapter 6. Managing Trust and Risk in New Biotechnologies: The Case of Population Genome Project and Organ Transplantation in Latvia. In: Robbins, Peter & Huzair, Farah (eds.). 2012. Exploring Central and Eastern Europe’s Biotechnology Landscape. Volume 9 of the series The International Library of Ethics, Law and Technology, pp. 111-129.
  • P. Chavot, A. Masseran. 2008. Choisir une technologie, préférer un mode de vie ? Mises en sens des transplantations d’organes [Choose a technology, prefer a lifestyle? Making sense out of organ transplantation]. Éthique et Santé, Vol. 5, Issue 2, pp. 96–102.
  • S. Schicktanz, J.W. Rieger, B. Lüttenberg. 2006. Gender Disparity in Living Kidney Transplantation: A Comparison of Global, Mid-European and German Data and their Ethical Relevance. Transplantationsmedizin, Vol. 18, pp. 30-37.
  • S. Schicktanz, M. Schweda, M. Franzen. 2008. ‘In a completely different light’? – The role of 'being affected' for the epistemic perspectives and moral attitudes of patients, relatives and lay people. Medicine, Health Care and Philosophy, Vol. 11, pp. 57-72.
  • S. Schicktanz, M. Schweda, S. Wöhlke. 2010. Gender issues in living organ donation: medical, social and ethical aspects. In: Klinge, Ineke; Wiesemann, Claudia (eds.): Sex and Gender in Biomedicine. Theories, Methedologies and Results, Göttingen.

 

 

Aim

The aim of this focus was to cross-culturally compare to what extent concepts of medicalisation and geneticisation are established in the public view and how they change lay people’s opinions on illness and health. The subproject was interested in the impact of changing genetic knowledge and increasing organ transplantation praxis on the ways people perceive themselves, their bodies, and how they define categories like affectedness, normalcy and gender.

A main theoretical assumption of the focus was that the facts and artifacts brought forward by modern biomedicine transform social institutions (health care systems, family), cultural orientations (understandings of disease and illness), moral practices (rights and responsibilities), but also that people’s concepts of trust and risk. This in turn impinges on the acceptance and use of respective technologies, which in turn influences their further cultural development and implementation.

The analysis referred to selected state of art reports, coded focus group discussion material, and interview data. Interview and focus group data were used for papers comparing Cyprus, Germany and Sweden, France and Germany as well as Germany, Austria and the Netherlands. One separate paper analysed Latvia. Though the vast amount and heterogeneity of the different data sets did not allow a reasonable comparison of all data from all countries, comparative approaches were emphasised in all papers and allowed to produce a wide range of conclusions from different country perspectives.

Additionally, some papers aimed at combining the perspectives of different disciplines by bridging the gap between normative ethical perspectives and social science perspectives. For example, trust and risk were one focus of these interdisciplinary studies.

 

Findings

Decision Making in the Light of Body Concepts and Gender

The impact of the biomedical technologies on understandings of body and person shows both similarities and differences through EU countries. Generally, the understanding of organ transplantation mirroring a mechanistic body view and locating self and personality in the brain are widespread among our respondents, regardless from where they are. However, body concepts concerning the social ‘binding effects’ created through transferred organs and tissues considerably differed between countries. While e.g. Cypriot respondents struggle with the question how to best classify the perceived intimate relation between donors and recipients and how to negotiate obligations associated with the relatedness of donors and recipients, Swedish and German respondents in turn struggle with the question if a donor-recipient relation is actually possible at all and with the pragmatism to untie suggested notions of connectedness. In contrast, with regard to the understanding of possible physiological effects of grafts on their recipients hardly any socio-cultural variations could be investigated.

Further, the comparative perspective also revealed that socio-cultural differences play a much greater role in the interactive normalization strategies, while at the level of individual coping strategies (universalised) medical knowledge and vocabularies are crucial assets which sideline the role of cultural or social difference.

A second comparative angle on the public perceptions of organ transplantation was developed along the gender-disparity thesis, which reflects why women generally donate kidneys more frequently than men, but fewer women than men receive organs for living kidney transplantation. This thesis was proven quantitatively for several countries. Further, assumptions were elaborated in a qualitative comparative approach following important ethical and practical questions concerning gender related motivations, gender roles, and socio-economic factors. Thereby significant gender differences could be identified in participants’ argumentation with respect to the role of the family and the closer social relationships for moral argumentation, the formal structure of moral judgements and ways of justification, and finally in the perception and assessment of the role of public actors such as the state and the medical system.

 

(De)Constructing Affectedness

Investigating the conceptual, epistemic and moral aspects of the state of being affected, an important difference between affected and non-affected respondents was observed in relation to biomedical decision-making and moral attitudes for both technologies under investigation. In the case of organ transplantation, many affected people referred to forms of reciprocity and solidarity. Lay people in turn rather emphasized the right of self-determination and freedom of choice. In the case of postnatal genetic testing, affected people ascribed themselves a moral responsibility and duty to inform relatives and protect next generations, whilst lay people rather argued for a duty to protect others from emotional stress. In their personal dealing

Further, our studies for affected people show that the perceived duty of reciprocity and the idea of solidarity with other affected people often result in public engagement by lobbying or self-help groups. Furthermore, many affected persons expressed the view that their affectedness constitutes a legitimate basis for preferential access to medical resources and privileged participation in political decision making.

However, on the personal level there seems to be a certain choice for a re-normalisation of ones self understanding at a quite early stage. In the case of transplanted people two main normalisation strategies can be observed: In a first case, people opt for normalisation by segregating themselves from the exceptional group of ill or disabled people and not to taking part in any form of a collectivised affected identity. In the second case in turn exactly such an early participation in patient groups and membership is reflected as providing security, group identity and thus normalisation in the sense of “sameness” of the group.

 

Complex Trust Relations

The trust or distrust in biotechnologies depend on historical, political and economic issues differing amongst EU countries. The analysis of German, French and Latvian cases shows the significance of these influences in people’s assessment of technologies by referring not only to biomedical but also broader social and political risks. Trust relations take different forms in all countries depending on the actors involved. In France recent biomedical scandals have obviously not only deeply destabilised peoples’ trust in the health sector, but more generally raised awareness for economical drifts and the links that exist between medicine and money. German participants in turn, rather refer to political history than to economisation, especially pointing out eugenics and euthanasia practised under the Nazi regime. In Latvia again, the perception of both technologies is stronger shaped by recent experiences of emerging capitalism, privatisation and private interest in health sector, which leads to the erosion of the perception of biomedical progress as national pride. The investigation of such culturally shaped public perceptions of risk and trust point out the importance of local negotiations of trust rather than global regulations, and thus also stress the role of intimate knowledge and experience.

Finally, this workpackage has also focused on trust relations from a stronger ethical perspective, pointing out that the networks of trust in the biomedical domain must be seen much broader than they have been so far in classical bioethics, where they were reduced to the patient-doctor-relationship and the confidentiality to protect patients’ privacy. Doctors cannot balance confidentiality, truth and privacy alone. They also have to acknowledge and communicate that avoiding harm in social webs by passing/not passing information may be a relevant moral position which should be thought over before e.g. genetic tests are done. The patient right of self-determination, but also the responsibility of the doctor to avoid harm, lead to the normative consequence to accept that factual and subjective knowledge are contextually negotiated.

For the Deliverable 4 report on preliminary results, please contact:

Aivita Putnina, putnina(at)lanet.lv

 

 

Focus 2

Public Understandings of (Techno)Science, Governance, and Participation

 

Articles

  • S. Beck, K. Amelang. 2010. Comparison in the wild and more disciplined usages of an epistemic practice. In: Thomas Scheffer, Jörg Niewöhner: Thick Comparison. Reviving the Ethnographic Aspiration. Leiden/Boston, Brill, pp. 155–179.
  • U. Felt, M. Fochler, A. Mager & P. Winkler. 2008. Visions and Versions of Governing Biomedicine: Narratives on Power Structures, Decision-making and Public Participation in the Field of Biomedical Technology in the Austrian Context. Social Studies of Science, Vol. 38, Issue 2, pp. 233-255.
  • U. Felt, M. Fochler and P. Winkler. 2010. Coming to Terms with Biomedical Technologies in Different Techno-Political Cultures: A Comparative Analysis of Focus Groups on Organ Transplantation and Genetic Testing in Austria, France and the Netherlands. Science, Technology, & Human Values, Vol. 35, Issue 4, pp. 525-553.
  • A. Putnina (2012). Managing Trust and Risk in New Biotechnologies: The Case of Population Genome Project and Organ Transplantation in Latvia. In: Exploring Central and Eastern Europe’s Biotechnology Landscape. Volume 9 of the series The International Library of Ethics, Law and Technology, pp. 111-129.

 

Aim

Aim of this focus was to offer a detailed analysis of the perceptions and imaginations citizens – be they directly affected or not – hold with regard to issues of public understanding of technoscience, public participation and governance in relation to the two selected biomedical technologies, organ transplantation and post-natal genetic testing, in different European countries.

The focus comprises three central research strands: Firstly, it was interested in the way European citizens conceptualise and assess different forms and providers of knowledge in the context of the two biomedical technologies discussed and how they relate their own experiences and knowledge grounds to it. Further we wanted to identify lay models of governance and participation and their relations to the participants’ conceptualisation of the respective socio-technical system. And finally, we also aimed at elaborating an analytic approach to address how different, historically grown techno-political cultures frame the way in which people come to terms with the two biomedical technologies in focus.

To investigate these issues, the research partners employed a cross-cultural comparative analytic approach, which proved to be a methodological and a practical challenge. One central practical challenge of comparative work was that any cross-institutional cooperation in the analysis of national data sets going beyond a shared coding process and the writing of more descriptive local reports, proved to be difficult to realise on a broader scale. To do a fine grained analytic comparison involving different national partners would have needed much more resources than any of the partners actually had. This especially concerns the opportunity to actually work in face-to-face interaction rather than via electronic mail. Thus project partners decided to respond in two ways. First, comparative analysis was carried out in teams, where face to face exchange was guaranteed. Secondly, to keep the workload for in-depth qualitative analysis in manageable scale, the partners decided to make a selection of the data sets to be analysed. Special criteria for this selection were the expected distinctness of the countries of comparison, the familiarity with and accessibility of national background information as well as the understanding of the original language spoken in the country (for being able to read the original focus group and interview data). Further, to guarantee a basic exchange about the interpretation of “foreign” data sets, the project meetings, where drafts were presented and vividly discussed as well as the mailing list were used. The report on Latvia holds a slightly different position, as it is based on a quite different data set than the rest. This made any direct comparative work difficult. However an indirect comparative angle was assured, as the Latvian contribution strongly referred to key categories of the project’s local reports in its analytic approach.

In the following, we will shortly sketch the theoretical and conceptual framing this focus is related to and then highlight how our research findings may contribute to the ongoing debates in these fields both on an academic and political level.

 

Findings

Public Understanding of Science

The notion of “public understanding of science” has gained strong impact in European science policy in the last decades, due to a growing political awareness for the increasing public scepticism in technoscientific development. Deliberate public interaction with technocience is seen as a key means to achieve the European goal of a knowledge based society (European Commission, 2000, 2001). However, in its beginnings and still of not deniable impact, public understanding of science was both politically and academically framed predominantly in terms of a deficit model of science communication. This model is built on a hierarchical and unidirectional sender-receiver relation. Scientific knowledge is to be “translated” into a more easily understandable language in order to be transmitted to a wider public (The Royal Society, 1985; Durant, Geoffrey & Thomas, 1989). Raising the density (and partly also the quality) of communication to a predominantly passive public was seen as the ultimate remedy to public ignorance of, fear of and alienation from science.

However, many science studies scholars have criticised this approach by lining out that scientific information is never simply handed down from science to members of the public, but is interpreted and reorganised in the process of communication, and is evaluated as well as negotiated by laypeople in a much wider personal context (Michael, 1992, 1996, Wynne 1992, 1996, see for an overview Felt 1999, 2003). It is this, so called “critical public understanding of science” tradition, this focus nourishes its reflections from.

Our comparative work aims at showing that beyond the personal context, positions towards biomedical technologies are also strongly shaped by social and cultural influences which vary strongly between the countries involved. Referring to Sheila Jasanoff’s latest cross-national comparative work and the concept of “civic epistemologies” as “culturally specific, historically and politically grounded, public knowledge-ways” (2005:249), we want to understand how the very political culture, the technological landscape as well as institutional settings have an impact on the way lay people frame their visions of technoscientific and more specific biomedical knowledge. Employing the concept of “technopolitical cultures” we showed for three European countries that personal positions towards specific biomedical technologies may only be understood in the context of the respective cultural and historical embedding of science and technology. This comprises how technology and social order are related, the interdependency between technology and regulation, but also perceptions of individual and collective agency in relation to a specific technology. Our research hence shows the fundamentally different ways biomedical technologies are inscribed into society. Though quite similar basic challenges posed by the technologies were perceived, such as the danger of genetic discrimination or an unfair allocation of organs, the way they were addressed was very different. The respective technologies have been inscribed into and become blended with technopolitical culture in the different national contexts. The processes of this inscription are to be understood as the central societal mechanism of coming to terms with new technologies which intrude as deeply into individual and collective lives as biomedical technologies do.

Further, in a contribution on “citizens’ epistemologies” we also investigated how citizens in different national contexts assess different forms of knowledge in developing their positioning towards biomedical technologies. In doing so, we aim to contribute to the ongoing debate on the increasing role of knowledge and information as structuring elements of modern societies. Indeed, the centrality of information in developing identities and opinions in modern society was shared among our focus group participants. Beyond this basic consensus though, we could trace interesting ruptures in the way different forms of knowledge were positioned towards each other. There were differences between affected and non-affected participants, between different national contexts as well as between the two technologies under discussion. Our research thus shows that the way people refer to knowledge, which different forms of knowledge they delineate, and how they assess its legitimacy as well as its political implications, varies strongly between national political cultures, technological contexts as well as with regard to their affectedness by the respective technology.

Further, the concept of “audacious comparison” addresses another challenge of comparative research by showing that the definition of comparative angles is by far no scientific privilege, but that various forms of comparative practice are elaborated by lay people themselves in making sense of biomedicine as well as reflecting oneself and cultural specifics. To place more systematic emphasis on such lay comparative practices may also facilitate the use of often problematic, scientifically pre-defined categories, and thus be especially fruitful in the context of further cross-cultural comparative research. 

Finally, the Latvian case study performed also points out that the public self understanding with regard to technoscientific issues is also transformed by socio-political change: Due to visible processes of economisation and privatisation, the image of objectivity, autonomy and progress, which is still strongly promoted for biomedicine in Latvian media and political discourse, obviously increasingly looses its public credibility To find political strategies to deal with new public calls for trust building mechanisms, transparency campaigns and public participation thus seems to be the pivotal points for acquiring future support for technology development.

 

Governance in the Biomedical Realm

Governance has become a buzzword in much of recent writing and discourse in political as well as academic spheres. And as with many popular analytical concepts, the usage of the term varies widely between authors and disciplines. While governance and government have for a long time been used as synonymous terms in common as well as scientific use, the recent discourse around governance situates both terms as opposing extremes, as two “heuristic ‘poles’ on a continuum of different governing types” (Jordan, Wurzel & Zito, 2005: 492). On this continuum, “government” is used to denote the “traditional” mode of ordering society in which power, steering and regulatory competences are seen in the hands of formal public institutions and the state. The instruments by which steering is implemented are traditional means of more or less centralized government such as laws and regulations. “Governance” on the other hand refers to new constellations of power that go beyond the structures of classical government, as well as to the rules and processes in which these powers are exercised. The emergence of governance is often argumentatively linked to a decline in the ability of central governments to effectively steer society and described as an answer to a perceived crisis in which traditional decision-making structures fail. The reasons for this failure may be manifold, ranging from challenges posed by processes of globalisation to a displacement of power from the nation state to inter- and supranational organisations such as the European Union. Governance describes a process of involvement of new actors in policy relevant decision-making. With the involvement of these new, non-governmental actors in policy-making, decision-making constellations shift from the top down model characteristic of government to network-shaped structures (Stoker, 1998).

Especially in the policy but also in the academic arena, especially the public is an actor strongly called to participate in these new modes of governance. However, while the role of the public is high on the agenda, very few contributions have so far paid attention to the public’s perception of the processes of governance and the actors involved.

Accordingly, it was a central aim of this workpackage to analyse how members of the public themselves define their approaches to governance. Our empirical work shows that both lay and affected people hold quite complex and differentiated views of governance constellations and processes, which are highly specific to the respective socio-cultural context, but also to the biomedical technology discussed. Hence our results do not support the thesis of a general shift from government to governance in public perception, but rather hint at a complex multiplicity and multi-layeredness of public positions on governing biomedicine. This has strong implications for citizen participation in governing biomedicine.

 

Citizen Participation in Governing Biomedicine

The growing emphasis on a dialogue between science and society in the European policy sphere but also in national contexts has created an increasing demand for methods to enact and experiment with new forms of citizens’ involvement, and thus has spawned a rising number of experiments in participatory engagement of the public concerning issues of science and technology. These experiments strongly draw on a European tradition of participatory events in science and technology (Felt, Fochler & Müller, 2003), which chronologically precedes the related governance discourses both in the policy and the academic sphere. In the following, we use the term participatory events to denote methods, which aim at the involvement of a representation of the public into collective positioning and partly also decision-making with regard to techno-scientific issues. Understanding the methodical settings in this project – focus group discussions and in depth patient interviews – as a certain contribution to such public participatory exercises (by giving lay people in different European countries the chance to line out their perspective on biomedicine and its governance and at least indirectly – via our analysis – being also politically heard), we however had to consider some recent, more critical reflections on public participation in our analysis.

Participation in governance is seen as an answer to the shortcomings of top-down techno-scientific approaches. However, as citizen participation becomes a standard policy discourse, it often seems to become a ‘standard recipe’ which is deployed in any techno-scientific setting and cultural surrounding without any consideration of the respective context. Participation is thus in the danger of becoming a mere ritual, an empty rhetoric (Irwin, 2006), or even a new form of “tyranny” (Cooke and Kothari, 2002) as it is implemented in a top-down way without reflecting on whether the expected participants will share the political visions enacted in these models or even the baseline assumption that an increase in public participation would be desirable.

Following these more critical reflections about public participation and its role in public discourse this workpackage critically challenged two normative basic assumptions in much of recent scientific as well as political literature: First that participation is generally welcomed by citizens and seen as an enlargement of their democratic rights. And secondly, that the public meaning of participation is largely independent from technological context and that standardised engagement designs may hence easily be transferred from one technological setting to another.

Our research shows that citizens have quite complex and often intuitive understandings of the governance of the technologies discussed in our project (see above). As they situate their position towards public participation in the context of these understandings, they do not unconditionally welcome public participation. Rather, in a number of cases, participation in its ‘standard form’ was seen as either undesirable, unrealistic or counterproductive. Engaging with these public meanings seems of key importance if the involvement of the public as a strategy to build more socially robust policies is to be successful.

Standardized recipes and methods for enacting public participation in any technoscientific setting are insensitive to such differences in public meanings and hence likely to fail. Particular attention and sensitivity to the specific configuration of technoscience and governance is thus required in developing and carrying out participation exercises.

 

References

Cooke, B. & Kothari, U. (2002): Participation: The New Tyranny. London: Zed Books

Durant, John R., Evans, Geoffrey A. & Thomas, Geoffrey P. (1989): The Public Understanding of Science, Nature 340: 11-14.

Epstein, Steven (1995): The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials, Science, Technology, and Human Values 20/4, 408-437.

Epstein, Steven (1996): Impure Science; Aids, Activism and the Politics of Knowledge, Berkeley, Los Angeles, London: University of California Press.

European Commission (2000): The Lisbon European Council: an Agenda of Economic and Social Renewal For Europe, Brussels, 28.2.2000: DOC/00/7.

European Commission (2001): European Governance: A White Paper, Brussels, 25.7.2001: COM (2001) 428 final.

Felt, Ulrike (1999): Why should the public "understand" science? Some aspects of Public Understanding of Science from a historical perspective, in: M. Dierkes und C. von Grote (eds.): Between understanding and trust: the public, science and technology, Berkshire: Harwood Academic Publishers.

Felt, Ulrike (ed.) (2003): Optimising Public Understanding of Science in Europe (OPUS Final Report).

Felt, Ulrike, Fochler, Maximilian & Müller, Annina (2003): Sozial Robuste Wissenspolitik: Analyse des Wandels von dialogisch orientierten Interaktionen zwischen Wissenschaft, Politik und Öffentlichkeit, Expertise to the Office of Technology Assessment of the German Parliament.

Glaser, Barney & Strauss, Anselm (1968): The Discovery of Grounded Theory: Strategies for Qualitative Research. London: Weidenfeld & Nicolson.

Grove-White, Robin, Macnaghten, Phil & Wynne, Brian (2000) Wising Up: The public and new technologies, Research report by the Centre for the Study of Environmental Change: Lancaster University.

Hagendijk, Rob, Healey, Peter, Horst, Maja & Irwin, Alan (2005): Science, Technology and Governance in Europe: Challenges of Public Engagement (STAGE Final Report)

Irwin, Alan (2001): Constructing the Scientific Citizen: Science and Democracy in the Biosciences, Public Understanding of Science 10/1, 1-18.

Irwin, A.: (2006): The Politics of Talk: Coming to Terms with the ‘New Scientific Governance’, Social Studies of Science 36(2): 299–320.

Jasanoff, Sheila (2005): Designs of Nature: Science and Democracy in Europe and the United States, Princeton, N.J. , Woodstock: Princeton University Press.

Jordan, Andrew, Wurzel, Rüdiger K. W. & Zito, Anthony (2005) The Rise of ‘New’ Policy Instruments in Comparative Perspective: Has Governance Eclipsed Government?, Political Studies 53(3): 477-496.

Lambert, Helen, Rose, Hilary (1996): Disembodied Knowledge? Making Sense of Medical Science, in: Irwin, A., Wynne, B.: Misunderstanding Science? The Public Reconstruction of Science and Technology, Cambridge: Cambridge University Press, 65-83.

Michael, Mike (1992): Lay Discourses of Science: Science-in-General, Science-in-Particular, and Self, Science, Technology and Human Values 17/3, 313-333.

Michael, Mike (1996): Ignoring Science: Discourses of Ignorance in the Public Understanding of Science, in: Irwin, Alan, Wynne, Brian (eds.): Misunderstanding Science? The Public Reconstruction of Science and Technology, Cambridge: Cambridge University Press, 107-125.

Michael, Mike (2002): Comprehension, Apprehension, Prehension: Heterogeneity and the Public Understanding of Science, Science, Technology & Human Values 27(3): 357-378

Michael, Mike & Brown, Nik (2005): Scientific Citizenships: Self-representations of Xenotransplantation’s Publics, Science as Culture 14(1): 39-57.

Royal Society, The (1985): The Public Understanding of Science, London: The Royal Society.

Stoker, Gerry (1998): Governance as theory: five propositions, International Social Science Journal 50(155): 17-28.

Wilsdon, James & Willis, Rebecca (2004) See-through Science: Why public engagement needs to move upstream, London: Demos.

Wynne, Brian (1992): Misunderstood Misunderstanding: Social Identities and Public uptake of Science, Public Understanding of Science 1/3, 281-304.

Wynne, Brian (1996): May the Sheep Safely Graze? A Reflexive View of the Expert-Lay Knowledge divide, in: Lash, Scott et al. (eds.): Risk, Environment and Modernity, London: Sage, 44-83.

 

For the Deliverable 4 report on preliminary results, please contact:

Ulrike.Felt(at)univie.ac.at

Focus 3

Bioethical and Public Evaluations of Biomedicine

 

Articles

  • H. Röcklinsberg. 2009. The Complex Use of Religion in Decisions on Organ Transplantation. J Relig Health, Vol. 48, pp. 62-78.
  • den Dikken, A. 2011. Body enhancement: body images, vulnerability and moral responsibility. Utrecht University.
  • M. Düwell. 2005. Sozialwissenschaften, Gesellschaftstheorie und Ethik. In: Jahrbuch für Wissenschaft und Ethik 10, pp. 5-22.
  • M. Düwell: Needs, Capacities and Morality. Over Problems of the Liberal to Deal with the Life Sciences. In: M. Düwell et al. (eds.). 2008. The Contingent Nature of Life. Springer Science+Business Media B.V., pp. 119-130.
  • N. M. Nijsingh, M. Düwell: Interdisciplinarity, applied ethics and social science research. In: Sollie, Paul, Düwell, Marcus (Eds.). Evaluating New Technologies, Volume 3 of the series The International Library of Ethics, Law and Technology pp 79-92.
  • S. Schicktanz. 2007. Why the way we consider the body matters – Reflections on four bioethical perspectives on the human body. Philosophy, Ethics, and Humanities in Medicine, Vol. 2, Issue 30, pp. 1-12.
  • M. Schweda, S. Schicktanz. 2009. “The Spare Parts Person” – Public Moralities concerning Donation and Disposition of Organs and what Academic Bioethics can learn from them. Philosophy, Ethics, and Humanities in Medicine, Vol. 4, Issue 4, pp. 1-10.

 

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 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.

But 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 do 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 workpackage 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(at)uu.nl

 

 

Dissemination and recommendations strategies

The project’s last research period was dedicated to the final synopsis and dissemination of the project’s research results as well as the formulation of consequences and recommendations. To meet these objectives, three major milestones were to be achieved:

  • Firstly, the organisation of a Final Conference, where project results were to be presented and discussed with an international audience and strategies for the formulation of recommendations were to be developed.
  • Secondly, a reporting on consequences and recommendations was to be published, translated into the project languages and made broadly available.
  • And thirdly, this final online publication was to be produced, giving an overview over the project work and presenting the major project results. 

The public conference

Aim of the project’s final conference “Engineering European Bodies - When Biomedical Technologies Challenge European Governance, Bioethics and Identities” was to present project results, to discuss them in a broad international audience, and to reflect on appropriate ways to formulate and disseminate the project’s final recommendations.

To meet these goals the consortium decided to invite international experts as keynote speakers to the conference, to disseminate a call for papers and to broadly advertise the conference.

As a meeting venue, the Campus of the University of Vienna was chosen due to its central city location and good infrastructure. Additional to EU funding, the conference was also supported by the Cultural Department of the City of Vienna.

 

Promotional activities

To early attract a broad international audience, a number of promotional and dissemination activities were launched:

A conference announcement, also comprising the call for papers, a call for registrations and a preliminary conference program, was disseminated on the conference webpage (www.univie.ac.at/virusss/cob/conference), as well as various international e-mailing lists and webpages.

Further a graphic designer was engaged to create of a conference poster, programs, abstract books as well as name tags for the conference. The posters were sent per mail to all consortium members, the invited speakers, selected members of the project’s international advisory network as well as other selected institutions. Further posters were directly advertised in public places in Vienna, such as libraries, cafeterias, institutes, and the university campus.

In the final promotion phase, in cooperation with the media agency of the University of Vienna, a press release was disseminated to diverse press agencies. There was national media coverage on the event both in the forefront of the Conference as well as in the following days. 

 

Speakers and talks

In cooperation with the steering committee, the keynote speakers of the four plenary sessions were invited and 20 of the 38 papers following the international call for papers were selected to be presented in parallel session together with research results of consortium members.

 

Synopsis

The following short conference report shall give an impression of the central discussions of the conference, which were also a central point of reference for the formulation of further project recommendations:  

From the 14th to the 17th of June, 2007, CoB’s final conference was carried out on the Campus of the University of Vienna. The conference was attended by 72 visitors from various EU member countries as well as North America, Australia, New Zealand and Japan. Attendants were coming from various disciplinary backgrounds – such as anthropology, ethics, history, medicine, religious studies, political sciences, sociology as well as social studies of science.

The main points of discussion were introduced by keynote speakers in four plenary sessions and further elaborated and specified in eight parallel sessions, where in total 28 papers were presented:

A central focus was placed on the challenges of governing biomedical innovation in a pluralistic Europe. Speakers from different disciplinary backgrounds pointed out an often lacking political awareness for complex actor constellations and socio-cultural differences in styles of governing biomedicine. Further also the role of bioethics committees as new influential political actors was critically evaluated in several conference sessions. Generally it was consented that the systematic consideration of the cultural richness and diversity of the European (techno) political landscape is constitutive for attempts of European harmonisation.

This argument was further elaborated and specified in a special focus on the public uptake of and participative engagement in biomedical governance. A number of contributions pointed out that the public assessment of what counts as appropriate and trustworthy governance differs strongly with regard to the respective political culture but also the biomedical technology at stake. Accordingly, also public engagement as such is not to be considered as unconditionally welcomed, but perceived as strongly dependent from the respective context and mode of implementation.

The very impact of biomedicine on concepts of identity was a further central issue at the conference. Critically challenging the still predominant narratives of enhancement, innovation and progress in the healthcare context, a stronger focus on patients’ very own understanding of relevant knowledge, the impact of biomedicine on their body and self-understanding but also their wider social relations was emphasised in several talks. 

Finally also the challenges and advantages of the interdisciplinary research were at stake, discussing both the mutual inspiration and learning opportunities from each other, but also debating on how to deal with crucial different research approaches, goal formulations and prejudices arising in the context of cooperation.

The discussions sketched above were further continued in the course of the social program of the conference – whereby especially the joint visit of a traditional Viennese Heurigen was very much enjoyed by the audience. 

For further information on the conference, the final conference program and the abstract book, please visit our conference webpage:

www.univie.ac.at/virusss/cob/conference

 

 

Report on consequences and recommendations