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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 1: Public Approaches to (Bio)Medicalisation and Geneticisation

QUICKLINKS: Aim / Findings / Scientific Output

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 workpackage 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 across 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 kindneys 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.


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 for 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@lanet.lv


 

Scientific Output

 

cob Learning to eat strawberries in a disciplined way. Normalization practices following organ transplantation

 

cob Social Refractions, Imaginary Anonymities and Disentangled Links in Donor-Recipient Relationships in Cyprus, Germany and Sweden

 

cob Negotiating trust and knowledge: patients and laypeople confronted with biomedical technologies

 

cob Managing trust and risk in new biotechnologies

 

cob Deciding on technologies, choosing a way of life? Constructing significations in the field of organ transplantation and genetic testing

 

cob Gender Disparity in Living Kidney Transplantation: A Comparison of Global, Mid-European and German Data and their Ethical Relevance

 

cob ‘In a completely different light’? – The role of 'being affected' for the epistemic perspectives and moral attitudes of patients, relatives and lay people

 

cob Women give, men receive? – Gender issues for moral attitudes towards the gift-economy and morality of organ donation

 

cob Public ideas and values concerning the commercialization of organ donation: A qualitative study in four European countries (Cyprus, Germany, the Netherlands and Sweden)


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)