Abstract Book

 University of Göttingen Workshop in the framework of the Excellence initiative: The relation of medical practice, medical knowledge and norms in bioethics 14.‐15. December 2009 Abstract Book Organized by Prof. Dr. Silke Schicktanz Dept. of Medical Ethics and History in Medicine Frank Adloff Re‐Thinking the “Gift of Life” from an Interactionist Point of View. Organ Do‐
nations and the Entanglement of Sociological and Ethical Reflection In debates around organ donations two models can be found: altruistic donations based on voluntary and gratuitous giving vs. a market model based on increased commercialization. Both models have in common that they primarily focus on the donors of organs. The presen‐
tation, however, which refers to a planned project, relies on the sociological and anthropo‐
logical theories of gift giving and reciprocity and thus picks out social relationships between the givers and receivers as the central topic. Interactionist conceptions of giving, receiving and returning, reciprocity, voluntariness, duty, gratefulness etc. are pivotal here. Gifts are often expressions of voluntariness and duty at the same time and as tie‐signs frequently transfer parts of an individual’s identity. They con‐
stitute real and imagined (in case of post mortem donations) relationships between donors and receivers. This poses different sociological and ethical questions than the altruistic and commercial concepts of organ donations allow to ask. Thus, it has to be discussed if affected people, lays and ethicists have an adequate language that allows for describing the interactionist dynamics of organ donations. The project aims at analyzing empirically the involved gift relationships, moral intuitions, emotions and descrip‐
tions in order to develop a satisfactory language of gift relationships which complies with the intuitions and values of the involved and which also permits new ethical considerations. Hence, false ontological assumptions have to be addressed and the question is raised if there are social dimensions of organ donations that are not adequately represented in ethi‐
cal discourses because we lack an adequate language for describing them. Prof. Dr. Frank Adloff, FU Berlin: studied sociology, philosophy and economics in Marburg, Jena and Berlin; doctorate in Sociology at Freie Universität Berlin in 2002; 2002‐2007 assis‐
tant professor at the University of Goettingen; 2004 Theodor Heuss Lecturer at the New School for Social Research, NYC; 2006/07 Max Weber Fellow at the EUI, Florence; 2009 ‘Ha‐
bilitation’ at the University of Goettingen; since 2007 professor of sociology at the John F. Kennedy Institute for North American Studies (FU Berlin). My research interests focus on historical‐comparative macro‐sociology, philanthropy, gift‐
giving and reciprocity, qualitative research methods, civil society, social theory, sociology of emotions, religion and the welfare state. 2
Selected publications: Frank Adloff, 2003: Im Dienste der Armen. Katholische Kirche und amerikanische Sozialpoli‐
tik im 20. Jahrhundert. Frankfurt/New York: Campus. Frank Adloff, 2005: Zivilgesellschaft. Theorie und politische Praxis. Frankfurt/New York: Campus Verlag. Frank Adloff/Steffen Mau (eds.), 2005: Vom Geben und Geben. Zur Soziologie der Reziprozi‐
tät. Frankfurt/New York: Campus Verlag. Frank Adloff, 2006: Beyond Interests and Norms: Gift‐Giving and Reciprocity in Modern So‐
cieties. Constellations: An International Journal of Critical and Democratic Theory, Vol. 13, No. 2: 407‐427. Frank Adloff, 2006: Religion and Social‐Political Action: The Catholic Church, Catholic Chari‐
ties, and the American Welfare State. International Review of Sociology – Revue Internation‐
ale de Sociologie, Vol. 16, No. 2: 1‐30. Frank Adloff/ Steffen Mau, 2006: Giving Social Ties: Reciprocity in Modern Society. Archives Européennes de Sociologie, Vol. 47, No. 1 : 93‐123. Frank Adloff, 2009: What Encourages Charitable Giving and Philanthropy? Ageing & Society, Special Issue: Minimal Families. Childlessness and Intergenerational Transfers, Vol. 29: 1185‐
1205. 3
Monika Bobbert Ethical Evaluation In Dependency On Empirical Prerequisites: The Example of The Baby Hatch In Germany, the first baby hatch was established in Hamburg in 2000. Today there are about 80 such safe havens, as well as clinics offering anonymous birth. The initially positive as‐
sessment of baby hatches was connected to the empirical assumption that in this way abor‐
tions, child abandonment, or neonaticides could be reduced. A deontological argument, in view of this assumption, would discuss the protection of life and the right to knowledge of one's own ancestry, for instance. A teleological argument would point out, among other things, that there is some question of whether a baby hatch actually does have the desired consequence, viz. that a reduction in the number of neonati‐
cides is ensured. Empirically, it has become apparent that the number of child killings has not been reduced, not even in regions with a safe haven arrangement, but that the number of anonymous births has risen. Owing to this anonymity, little is known of the motives of the mothers involved, who have given their child to a baby hatch or have given birth anony‐
mously. In the meantime, the ethical evaluation of the baby hatch and anonymous birth has become a matter of some debate, because the data situation is poor and because the few empirical data available are interpreted in different ways. If one starts with the empirical assumption that mothers who kill their babies (or let them die) immediately after birth are in an exceptional psychological state which renders it unlikely that they would plan to leave the child at a baby hatch or to give birth anonymously, then these mothers could not be helped by this arrangement in any case, and the whole ethical and normative question would change. If, on the other hand, one starts with the assumption that women are involved who would otherwise have given birth normally, or who would otherwise have let the child be adopted, having left the name, then the ethical evaluation looks much different. Assumptions with regard to the motives of the women involved range from hiding the results of adultery or incest, to being overtaxed by the need to inform the father or to make him liable for main‐
tenance. In other European countries, especially in France, the experience of anonymous birth stretches back decades. But is the empirical material available from France helpful in the context of the German debate – for example, in view of the fact that in France women without legal residency often give birth anonymously? In dealing with the problem of the baby hatch, the ethical evaluation is directly dependent on the existence and interpretation of empirical studies. These mutual dependencies are to be played through and analysed. The result of such an analysis might be the call for ethically enlightened social research. Equally, the example of the baby hatch is used to examine the question of what empirical prerequisites there must be for an ethical and normative evalua‐
tion, and in what way ethical and normative judgement may be passed in view of a thor‐
oughly uncertain and controversially interpreted data situation. 4
PD Dr. Monika Bobbert, University of Heidelberg: has been working as assistant professor at the Institute for History and Ethics of Medicine (Director: Prof. Dr. Wolfgang U. Eckart) at the Medical Faculty, University of Heidelberg, Germany, since April 2001. In her habilitation thesis (May 2008) she worked on “End of life decision making for uncapacitated patients in regard to withdrawal of medical treatment ‐ historical, theoretical and ethical perspectives”. Since January 2008 she has been member of the Ethical Commission for Scientific Research of Human Beings at the Medical Faculty, University of Heidelberg. In 2005 she wrote an in‐
terdisciplinary report in cooperation with Prof. Dr. Hans Lilie, Universität Halle‐Wittenberg, expert for medical law, and Prof. Dr. Uwe Brückner, Director of the Ethical Commission at Ulm University as well as expert for experimental surgery, for the Enquete‐Commission “Ethik und Recht in der Modernen Medizin” of the German Parliament about the topic “Pro‐
tection of patients and participants of medical research”. Her PhD‐thesis about “Patient autonomy and nursing: foundation and application of a moral right” was accepted in 2001 by the Faculty of Catholic Theology at Tübingen University. Monika Bobbert worked as visiting researcher at Kennedy Institute of Ethics, Georgetown University, Washington, D.C., and Hastings Center, Garrison, N.Y., USA for 4 months in 1997. From 1995 to 1998 she was PhD‐
researcher with a scholarship from ”Deutsche Forschungsgemeinschaft” (German Research Foundation) and member of the Postgraduate College ”Ethics in the Sciences”, Interdepart‐
mental Center for Ethics in the Sciences, University of Tübingen. In 1990 she wrote her di‐
ploma‐thesis in Theology about “John Rawls´ theory of justice: questions about foundation and application” and in 1993 her diploma‐thesis in psychology about “Ethical problems of deception of research participants in psychology”. 5
Ruth Denkhaus Participants’ Expectations in Social Neuroscience Research. Towards an Empirically Informed Research Ethics The paper addresses methodological aspects of the integration of social ethics, sociology, social psychology and social neuroscience by introducing the interdisciplinary research pro‐
ject “Cultural neuroscience. Neural processes, social interaction, and societal conflicts” and explaining and discussing the design (underlying idea, hypotheses, expected results, further questions and problems) of an accompanying qualitative interview study that includes both research participants and researchers and aims at uncovering their respective situation con‐
struals, role conceptions, and normative expectations. Background: What do social neuroscience research participants think they are doing in the lab? What conceptions of “neuroscience” do they have, what motivates them to take part in social neuroscience experiments, how do they interpret their own role in the experiments and their behaviour in the (artificially generated) social situation in the lab? And how does this contrast with what researchers think about the whole matter? These and similar ques‐
tions are at the heart of a qualitative interview study carried out in Marburg as part of the interdisciplinary research project “Cultural neuroscience. Neural processes, social interac‐
tion, and societal conflicts” (CNS). The CNS core project combines methods and paradigms from experimental social psychology (e.g. the minimal group paradigm) with functional magnetic resonance imaging in order to gain a deeper understanding of the dynamics of intergroup conflicts. The accompanying interviews, which supplement the fMRT data from the experiments with qualitative data, are supposed to serve as a test for external validity, but also – and more importantly – to provide insight into the situation construals, role con‐
ceptions, and normative expectations of both research participants and researchers. The guiding idea is to compare the different ways in which participants/lay people and research‐
ers/experts make sense of the experiments (their different stages, their purpose etc.) and of “neuroscience” in general, and to contrast the normative expectations and assumptions of research participants with the researchers’ understanding of their work and its purpose. Questions like these seem especially relevant in light of the fact that the experimental re‐
search itself is guided by an implicit (or even explicit) normative agenda: the prevention and reduction of societal conflicts. By exploring the perspective of lay people that are involved in research processes, the study tries to contribute to a reconception of experimental research as a cooperative enterprise between researchers and participants. Content of the Paper: After briefly introducing the research agenda of the Marburg “Cultural neuroscience” project and the setup of the laboratory experiments, the paper explains the idea behind the interview study. Since both the core project and the sub‐project are still at the planning stage, no data will be presented. Instead, the focus will be on conceptual and methodological issues concerning the design of the study and the potential significance of the results for current debates in research ethics. 6
Ruth Denkhaus, M. theol., University of Marburg: since 10/2003 PhD studies in Tübingen (Eberhard‐Karls‐Universität) and Marburg (Philipps‐Universität). 4/2003 Final Examination (Magistra Theologiae).4/1997–3/2003 Undergraduate studies in Protestant Theology in Aachen, Bonn, Aberdeen and Tübingen. Employment (incl. Scholarships/Research Grants): Since 1/2007 Research assistant at the Department of Protestant Theology (Chair of Social Ethics/Bioethics), Philipps‐Universität Marburg. (currently involved in the Interdisciplinary Research Project “Cultural Neuroscience. Neural Processes, Social interaction and Societal Conflicts”).1/2004–12/2006 Member of the DFG‐funded Research Training Group “Bio‐
ethics” at the Interdepartmental Centre for Ethics in the Sciences and Humanities (IZEW) Tübingen. Research Interests Normative foundations of bioethics, metaethics, current debates in normative ethics (espe‐
cially contemporary Neo‐Kantianismus), history of and current debates in Protestant ethics, philosophy & history of science, political philosophy, questions of social justice, religion and politics/religion and public reason, theories of recognition 7
Julia Dietrich “Applying” Ethical Theory: The Relationship between Ethics and Empirical Data Problem and Objectives: The paper addresses the questions what it means to “apply” ethics in a manner which is “sensitive to the context” and which role the correlation between em‐
pirical social data and ethical reflection plays in this process. The purpose is to provide a sys‐
tematic overview of the interaction between norms and values on one hand and empirical social knowledge on the other hand in the context of “applied” ethics. Method: The paper connects systematic reflections on the structure of ethical judgement with the discussion of a linguistic qualitative study about subjective illness theories of pa‐
tients suffering from chronic facial pain. A model of ethical judgement will be presented, which provides a framework of reference for differentiating several subgoals of ethical judgement and for defining different roles of empirical and prescriptive assumptions. The linguistic study refers to a paradigmatic aim in medicine and to a basic dimension of therapy – namely the alleviation of pain and the communication between physician and patient. Result: The combination of ethical theory and an example of clinical medical ethics provides a systematic overview of the different types of correlations between empirical data and eth‐
ics. It shows that there is not the one relation between empirical data and moral knowledge, but that both can win different functions. What ensues is the hypothesis that “application” and “sensitivity to the context” are independent of fundamental ethical assumptions in most cases. Furthermore descriptive assumptions provoke a process of specification of ethical judgement, which in this form can not be initiated and anticipated by the ethical justification of norms and values, but which is tied back to it in the process of justification of actions. Dr. Julia Dietrich, University of Tübingen: 1985 – 1992: Graduate studies in philosophy, modern German literature and political science in Bonn and Munich; 1992 – 1995: Member of the Postgraduate Programme "Ethics in the sciences and humanities" at the Interdepart‐
mental Centre for Ethics In The Sciences and Humanities (IZEW), University of Tübingen, with a thesis on “Philosophical and Ethical Dimensions of Pain Therapy; 1996 – 1999: Research fellow in the project "School Ethics Technology (SET)" at the IZEW; since 2000: Coordinator of the Department School and Education at the IZEW and since 2001 Coordinator of the Ba‐
sic Ethical‐Philosophical Studies (EPG) at the University of Tübingen; 2008: PhD in Philoso‐
phy, University of Dresden, with a thesis on the formation of ethical judgment and ethical literacy. Principal research interests: ethics, applied ethics; formation and methods of ethical judg‐
ment; didactics; philosophical and ethical dimensions of pain experience and pain therapy. 8
Selected Publications: Dietrich, Julia (2009): Negotiating a Shifting Paradigm: Reflections upon the Need for an In‐
tegrative Philosophy, Ethics (and Policies) of Pain Medicine. In: Giordano, James; Boswell, Mark. V.(Hg.): Pain Medicine: Philosophy, Ethics, and Policy. Yarnton u.a.: Linton Atlantic Books, Ltd. S. 243‐247. Dietrich, Julia (2009): Zum Verhältnis von Ethik und Empirie: ein Überblick am Beispiel der Schmerzmedizin. In: Simon, Alfred; Schildmann, Jan; Vollmann, Jochen (2009): Klinische Ethik. Campus (im Erscheinen). Dietrich, Julia (2009): Die Kraft der Konkretion oder: Die Rolle deskriptiver Annahmen für die Anwendung und Kontextsensitivität ethischer Theorie. In: Ethik in der Medizin, Bd. 21, Heft 3, September 2009, S. 213‐221. Dietrich, Julia (2008): Körper, Ethik, Experiment – Überlegungen zur ethischen Relevanz des Unverfügbaren im Erleben von Lust und Schmerz. In: Pethes, Nicolaus; Schicktanz, Silke (Hg.): Sexualität als Experiment? Identität, Lust und Reproduktion zwischen Lebenswissen‐
schaft und Populärkultur. Frankfurt am Main: Campus. S. 233‐250. Dietrich, Julia (2007): Was ist ethische Kompetenz? Ein Philosophischer Versuch einer Sys‐
tematisierung und Konkretion. In: Ammicht Quinn, Regina; Badura‐Lotter, Gisela; Knödler‐
Pasch, Margarete; Mildenberger, Georg; Rampp, Benjamin (Hg.): Wertloses Wissen? Fachun‐
terricht als Ort ethischer Reflexion. Bad Heilbrunn: Klinkhardt. S. 31‐51. 9
Marcus Düwell What does Medical Ethics need Empirical Methods for? An Inquiry in Normative Ethics Definition of the Problem The use of empirical methods in medical ethics and bioethics has generated proposals for reconceptualizing medical ethics as a discipline that integrates eth‐
ics and social science. Arguments The position taken in the present paper, by contrast, is that what is needed, in the first place, is a moral‐philosophical evaluation of when it makes sense to employ empiri‐
cal methods. Medical ethicists must demonstrate what empirical research is necessary for answering normative questions. Any such justification will, however, necessarily rely on normative assumptions that, for their part, require moral‐philosophical justification. The paper examines the use of empirical methods in medical ethics in terms of the appropriate relationship between the methodology of applied ethics and debates over the foundations of ethics. The paper concludes by raising the question of whether it is not the case that most empirical studies in medical ethics are of dubious merit, by the accepted standards of re‐
search ethics. Prof. Dr. Marcus Düwell, University of Utrecht: born in 1962, studied philosophy, german literature and theology in Tübingen and München. He received his PhD in philosophy for a thesis about the relation between ethics and aesthetics. Form 1991‐1993 he was Academic Coordinator of the "Graduiertenkolleg" Ethics in the Sciencies and Humanities, financed by the Deutsche Forschungsgemeinschaft and from 1993‐2001 Academic Coordinator of the Interfacultary Center for Ethics in the Sciences and Humanities at Tübingen University. Since 2002 he holds a chair for philosophical Ethics at the Department of Philosophy at Utrecht University and is research director of the Ethiek Instituut at Utrecht University and director of the Leiden‐Utrecht Research Institute for Philosophy. Since 2005 he is director of the Netherlands Research School for Practical Philosophy. He is Editor‐in Chief of the book series “Library for Ethics and Applied Philosophy” and the journal “Ethik in der Medizin”. 10
Some Publications: Ästhetische Erfahrung und Moral (Aesthetical Experience and Morality) (Alber, 1999) Bioethik – Methoden, Theorien, Bereiche (Bioethics‐ Methods Theory, Dimensions) (Metzler 2008) Mitherausgeber von: Ethik in der Humangenetik (Francke, 1998) Umwelt, Ethik, Recht (Francke, 2002) Handbuch Ethik (Metzler, 2002, 2. Aufl. 2006) Bioethik – Eine Einführung (Suhrkamp, 2003) Wieviel Ethik braucht die Medizin? (Mentis 2006); Bioethics in Cultural Contexts (Springer 2006) The Contingent Nature of Life (Springer 2008); Bioethik – Methoden, Theorien und Bereiche (Metzler 2008) 11
Julia Inthorn Professional Ethics as a Subject of Empirical Research – Doctors’ perspectives on Living Wills and End’ of Life Decisions This paper investigates the theoretical and methodological issues that arise when research‐
ing the motivational factors and professional ethics that underpin doctors’ professional deci‐
sions. Based on a study of interviews with doctors in Austria about their acceptance of living wills, this paper suggests that both the concept of facts and the concept of values need to be understood as discursively constructed and negotiated by interviewees. The clear distinction between normative and descriptive statements commonly found in theoretical debate can‐
not be transferred to empirical research in a simple way. Framework: Decision making is part of doctors’ everyday lives. Especially at the end of a pa‐
tient’s life when further treatment might be considered futile, a doctor‘s decision can have far reaching consequences. Doctors sometimes need to weigh up prolonging a poor quality life against letting a patient die. Such decisions take place within a framework which negoti‐
ates the relationship between scientific knowledge and moral values. Living wills are the ex‐
pression of patients’ wishes. This study shows that when making decisions about further treatment, the ways in which doctors consider these wishes depend on their understanding of professional ethics. Some doctors conceptualise their role similar to that of a mechanic or engineer whose task it is to repair the body. In this case doctors draw on register of facts and logic and refer to living wills as additional elements in a process of functional thinking. Oth‐
ers describe medical treatment as a service to patients. Treatments are adapted to patients’ wishes. For these doctors living wills are a helpful guide for the choice of appropriate treat‐
ment. The distinction between ethics and empirical research as well as between normative and descriptive sentences usually refers to a theoretically established fact value dichotomy. However, the results of this study suggest that this distinction between the factual and moral dimensions of a decision is not upheld in the everyday language of medical decision‐
making. Facts only become facts by being labelled as such by doctors. Doctors find different answers to the question if a decision has a moral dimension. Ethics are constructed in differ‐
ent ways and philosophical ethics is only one voice within that discourse. 12
Julia Inthorn, Dipl. math., University of Vienna: is research assistant at the department for ethics and law in medicine at the University of Vienna. She is currently working on a project on "Practical, ethical and judicial consequences of the Austrian law on advance directives". From 2004 to 2006 she worked as a research assistant at the Ludwig‐Maximilians‐Universität (Munich) first at the chair for ethics of Prof. F.W. Graf then on a DFG funded project on clini‐
cal ethical committees. Having graduated from the Ludwigs‐Maximilians‐Universität and Munich School of Philosophy with degrees in mathematics, philosophy and adult education, she completed her doctoral thesis on philosophical aspects within the quantitative‐
qualitative debate in social sciences. Her main research interests are twofold, in bioethics concerning structural and personal conditions for decision making and in philosophy of social sciences concerning the distinction between normative and descriptive propositions in empi‐
rical research. Her research portfolio also includes work on child protection groups in hospi‐
tals and intercultural comparisons of health care systems and ethics. Recent publications: „Gesundheit und Gerechtigkeit. Ein interkultureller Vergleich zwischen Österreich und den Philippinen“ (with M. Reder and L. Kaelin, forthcoming) „Spiritualität, Religion und Kultur am Krankenbett“ (ed. with U. Körtner et al. 2009). 13
Udo Kelle "Mixed Methods" and Beyond ‐ Using Triangulation to Enhance Reflexivity in the Research Process The integration of qualitative and quantitative methods offers possibilities to cope with cer‐
tain well known difficulties of social research which are neglected in current discussions about mixed methods. Social research always encompasses different forms of social interac‐
tion and takes place in broader social contexts. This causes a variety of age old and well de‐
scribed methodological challenges which have been discussed for a long time under labels like "reactivity", "methodological artifacts" and so forth. However, these issues are still over‐
looked both in quantitative and qualitative research. I will discuss possible reasons for that, and by drawing on empirical examples I will demonstrate how a combination of methods can enhance the researchers´ reflexivity about these problems. Furthermore I will argue that we need concepts of method and data triangulation which transcend the current understanding of mixed methods (the integreation of qualitative and quantitative methods) and which take into account the necessity to combine all kinds of information a research field can deliver. Prof. Dr. Udo Kelle, University of Marburg: is professor for social research methods at the Philipps‐University Marburg. He has written intensively about qualitative and quantitative research methods in the social sciences and about their epistemological basis. His current research interests are the integration of qualitative and quantitative methods and the role of social interaction in social research. Selected publications: Kelle, Udo; Schmidt, Peter; Herrmann, Jens (2009): Special issue ‐ Mixed Methods ‐ der Zeitschrift Quality and Quantity (in print) Kelle, Udo (2007): The Development of Categories ‐ Different Approaches in Grounded The‐
ory. In: Bryant, Anthony; Charmaz, Kathy (Hg.): Grounded Theory. London: Sage. S. 191 ‐ 213. Kelle, Udo (2006): Combining Qualitative and Quantitative Methods in Research Practice ‐ Purposes and Advantages. In: Gürtler, Leo; Huber, Günter L. (Hg.). Special Guest Issue on Mixed Methods. Qualitative Research in Psychology, Vol. 3 (4), pp. 293‐311. 14
Gesa Lindemann Implicit Normative Assumptions and the Explicit Concept of Norms and Mo‐
rality in various Sociological Theories Definition of the problem The central focus of Empirical Ethics is the study of the social and cultural aspects inherent in medical practice. Arguments This approach distinguishes be‐
tween the scientific‐cognitive aspects and the cultural‐normative aspects of medicine, which would conventionally be investigated separately by the social sciences. When however medicine is conceived of as social practice, the sharp distinction between scientific medicine, culturally normative aspects and ethical reflection becomes less distinct. Conclusion We sug‐
gest combining ethical reflection and empirical research in multiple stages. In this case, so‐
cial scientific analyses would provide an initial framework for understanding medical prac‐
tices and a foundation for further ethical investigations, which would then allow for a socio‐
logical critique Prof. Dr. Gesa Lindemann, University of Oldenburg: her generell interests are social theory, theory of society, societal border regimes, philosophical anthropology, sociology of science. Recently, she is Fellow at the „Zentrum für interdisziplinäre Forschung“ (Institute for ad‐
vanced studies) University of Bielefeld, Research Group: Herausforderungen für Menschen‐
bild und Menschenwürde durch neue Entwicklungen der Medizintechnik (New develop‐
ments in medical technology as a challenge for human dignity) (Ws 2009/10). Since 1st of June 2007 she is Professor for Sociology – Sociological Theory at the Institute for Sociology, Carl von Ossietzky‐University, Oldenburg. August 17th ‐19th 2006: Visiting Professor at the “Swedish Collegium for Advanced Study”, (Summer school on “Life Politics” in Helsinki). Feb‐
ruary 9th – March 9th 2006: Visiting Scholar at the Kennedy School of Government, Harvard University (USA). September 12th – 23rd 2005: Visiting Professor at the State University of Rio de Janeiro (Brazil). June 20th – 24th 2005: Visiting Professor: ESRC Centre for Genomics in Society, Exeter University, UK. Since October 1st 2004: Continuing the research project „Con‐
sciousness and anthropological difference. A comparison of neuroscientific research in hu‐
man persons and animals ”. Summer term 2004: Visiting professor at the Faculty for Sociol‐
ogy, University of Bielefeld. Teaching obligations included giving a lecture and 3 courses on sociological theory. Since December 1st 2003: Principal Investigator at the Institute for Soci‐
ology, Technische Universität Berlin (Technical University of Berlin): Starting a research pro‐
ject funded by the Deutsche Forschungsgemeinschaft: „Consciousness and anthropological difference. A comparison of neuroscientific research in human persons and animals”. Local cooperation with Prof. Dr. Werner Rammert. 15
Marcel Mertz Development of Clinical‐Ethical Guidelines: The Role of Scientific Knowledge and “Local Knowledge” in Transdisciplinary Research Projects in Clinical Ethics Problem: Where and how may scientific 1 knowledge and “local knowledge” of practitioners have bearing on a transdisciplinary research project such as the development of clinical‐
ethical guidelines? Background: A research‐ and consensus‐based clinical‐ethical guideline for over‐ and under‐
treatment in relation to patient autonomy was developed by the METAP project 2 in collabo‐
ration with an intensive care unit of the University Hospital Basel. This guideline is comple‐
mented by a structured decision‐making process. To date, the development of ethical guide‐
lines and recommendations in health care is mainly consensus‐based. A systematic method‐
ology that allows for controlling the quality of the guideline is considered rarely. Therefore, besides the content‐related work involved in developing the guideline, METAP provided a new methodology, using the development of medical guidelines according to evidence‐
based medicine as a role model. Results: Reflections on the METAP project indicate the crucial role of scientific and local knowledge when developing a methodology, for justifying the content of the guideline or validating practicability and acceptance of the guideline. A literature review was conducted in order to understand and demonstrate the relevance of over‐ and undertreatment as a real‐world problem of medical practice. Additionally, health care professionals were inter‐
viewed about their perception of this topic in their daily clinical routine; they were also asked which instrument they might find helpful for facing these problems. Possible obstacles to the implementation of the guideline were explored by drawing on scientific literature and consulting local health care professionals. Furthermore, established knowledge of the social and medical sciences was regarded to be more relevant for several content‐related aspects of the guideline (e.g. determinating empirically founded indicators for specific clinical‐ethical problems such as undertreatment). The structured decision‐making process of METAP was devised using concepts of cognitive and social psychology. Finally, a panel consisting of phy‐
sicians, nurses and other caregivers was established in order to review practicablity and un‐
derstandability of the guideline. Consequently, a great deal of the content of METAP is sup‐
ported by scientific knowledge and/or “local knowledge”. Empirical methods become also important for implementing and evaluating the pilot‐version of the guideline. Relevance: The METAP project can serve as a vivid example to illustrate how scientific (e.g. empirical) knowledge and clinical practice have direct impact on a ethics project. It also 1
As in the common use of the German language, „science“ includes natural sciences, social sciences, and humanities. Projects of the Swiss National Foundation (SNF) No. 3200B0‐113724/1 („Between Over‐Treatment and Under‐Treatment. Ethical Problems of Micro‐Allocation Taking Intensive and Geriatric Care as Examples. Quality Development in Medical and Nursing Care Through a Modular, Ethical Treatment Allocation Process (METAP) in Vulnerable Patient Groups“) and No. 32003B‐125122 („Fairness and transparency. Clinical ethical guideline METAP – evaluation, methodological foundation and improvement“). Project leadership: Prof. Dr. Stella Reiter‐Theil. 2
16
shows how the product – an ethical guideline – can be improved regarding its foundation and practicability. Yet there are still conceptual and practical challenges to cope with. Marcel Mertz, MA, University of Basel: born 1979, has studied Philosophy and Sociology at the University of Basel, focusing on topics such as informal logic, metaethics, philosophy of science and sociology of science. Since 2005 he is part‐time assistant researcher of the Department of Medical and Health Ethics (Prof. Dr. Stella Reiter‐Theil), Medical Faculty of the University of Basel, mainly working in projects funded by the Swiss National Foundation. Since November 2009, he is also assistant researcher at the Chair of Philosophy III (Prof. Dr. Bernward Gesang), Philosophical Faculty of the University of Mannheim. Currently, his main interest lies in the metaethical and methodological discussion of “empiri‐
cal” and “evidence‐based” ethics, especially in combination with the development of ethical guidelines in health care. Selected publications: Marcel Mertz, 2009 (in press): Zur Möglichkeit einer evidenzbasierten Klinischen Ethik. Philosophische Untersuchungen zur Verwendung von Empirie und Evidenz in der (Medizin‐)Ethik. München/Ravensburg: GRIN Verlag Stella Reiter‐Theil / Marcel Mertz / Barbara Meyer‐Zehnder, 2007: The complex roles of rela‐
tives in end‐of‐life decision‐making. An ethical analysis. Health Ethics Committee Forum, Vol. 19, No. 4: 338‐361 Marcel Mertz, 2007: Complementary and Alternative Medicine: The Challenges of Ethical Justification. A philosophical analysis and evaluation of ethical reasons for the offer, use and promotion of complementary and alternative medicine. Medicine, Healthcare and Philoso‐
phy – A European Journal, Vol. 10, No. 3: 329‐345 17
Bert (Albert Christiaan). Molewijk Empirical Ethics? Which Kind? For what Reason? Theory and Practice of an Integrated Empirical Ethics Ethicists differ considerably in their reasons for using empirical data. During my presentation a brief overview of four traditional approaches to the use of empirical data: “the prescriptive applied ethicists,” “the theorists,” “the critical applied ethicists,” and “the particularists.” The main aim of this presentation is to introduce a fifth approach of more recent date (i.e. “integrated empirical ethics”) and to offer some methodological directives for research in integrated empirical ethics. All five approaches are presented in a table for heuristic pur‐
poses. The table consists of eight columns: “view on distinction descriptive‐prescriptive sci‐
ences,” “location of moral authority,” “central goal(s),” “types of normativity,” “use of em‐
pirical data,” “method,” “interaction empirical data and moral theory,” and “cooperation with descriptive sciences.” Ethicists can use the table in order to identify their own ap‐
proach. Reflection on these issues prior to starting research in empirical ethics should lead to harmonization of the different scientific disciplines and effective planning of the final re‐
search design. Integrated empirical ethics (IEE) refers to studies in which ethicists and de‐
scriptive scientists cooperate together continuously and intensively. Both disciplines try to integrate moral theory and empirical data in order to reach a normative conclusion with respect to a specific social practice. IEE is not wholly prescriptive or wholly descriptive since IEE assumes an interdepence between facts and values and between the empirical and the normative. The paper ends with three suggestions for consideration on some of the future challenges of integrated empirical ethics. Bert (A.C.) Molewijk, RN/MA/PhD, University of Amsterdam: (1966) is assistant professor of moral deliberation and clinical ethics and works at the Department of Medical Humanities of the VU Medical Center in Amsterdam as program director ‘Moral Deliberation and Clinical Ethics’. He studied Mental Health Care Nursing (RN) and Health Care Ethics (MA). His thesis ('Risky Business. Individualised Evidence‐Based Decision Support and the Ideal of Patient Autonomy. An Integrated Empirical Ethics Study', 2006) consisted of a multidisciplinary study on the implicit normativity of the constructing, presentation and communication of scientific facts, and was supported by the Programme Ethics and Policies of the Netherlands Organiza‐
tion for Scientific Research (NWO). His postdoc (also supported by NWO) dealt with the im‐
plicit normativity of technological artefacts. Since September 2003 he is working as a researcher, trainer and manager on Clinical Moral Deliberation projects (first at Maastricht University and since March 2009 at VUMC). He is chairing two Health Ethics Committee (in elderly care and mentally disabled care) and a member of a National Review Board for scientific research in mental health care. He recently 18
co‐founded the Dutch network for Clinical Moral Deliberation (hosted by the Ministry of Health, Welfare and Sport) and the European Network for Clinical Moral Deliberation (hosted at the VUMC). He is an advisory board member of Clinical Ethics and member of the advisory board of the National Center for Ethics and Health Care. He recently co‐
edited thematic issues on empirical ethics (Bioethics) and moral deliberation (Tijdschrift voor Gezondheid en Ethiek), and published several papers on theory, practice and training of moral deliberation (e.g. Health Care Analysis, 2009). His main interests are practice and the‐
ory of moral deliberation, moral competence, clinical ethics, and empirical ethics. 19
Uta Müller The Role of Physical Experience for Ethical Decisions The normative aspects of the human body play a central role in the debates concerning medical treatment in cases of illness or in cases of body ‘enhancement’. Describing and therefore evaluating a human being as either healthy or ill justifies the reasoning behind medical treatment. The ideas presented here will not focus on the meaning of “illness” and all its semantic varieties, but on the human body itself and how it plays a crucial role in deci‐
sion‐making in the context of medical treatment. The relationship we have with our own physical self, with our bodies, forms the basis for how we experience and perceive the world. We live in the outer world and gain knowledge of that world through our body, as we also gain knowledge about ourselves from ‘within our physical self’ by means of our body. The pertinent question here is how experience is influ‐
enced and how our will to do something or to avoid something is shaped by our bodies. Physical experience deemed pleasant is sought out while physical experience judged un‐
pleasant is avoided. We may not be in the position to control these experiences, as they happen to us, whether pleasant or not. But nevertheless, we are capable of making the deci‐
sion to avoid pleasant experiences as well as to seek out unpleasant experiences, if reasons exist to do so. How people experience their bodies as they age influences how they live their lives. The bodies of elderly people set certain limits to their activities. The question then arises of whether these limits are to be accepted or not. In the present context, this question will be addressed with regard to how it shapes decisions on medical treatment. It is important to point out that the crucial element in decision‐making here is the subjective experience of the individual. But, as mentioned above, human beings can put aside their wishes and needs when they are convinced it is better to do so. The ethical concept relevant here is that of “autonomy”, that the individual patient may decide what is best for him or her. But not all decisions which are “autonomous” are morally correct. Our ethical reflection must focus on other ethical concepts such as happiness and personal well being, as well as on rights and obligations, and even justice and fairness. My presentation will consider the relationship between subjective experiences of the body and their effect on decision making, especially with regard to medicine. Dr. Uta Müller, University of Tübingen: works at the Interdepartmental Centre for Ethics in the Sciences and Humanities (IZEW) at the Eberhard Karls Universität Tübingen; she teaches ethics in the context of the Basic Ethical‐Philosophical Studies (“Ethisch Philosophisches Grundlagenstudium”, EPG) in the Curriculum of teachers' studies in Baden‐Württemberg. She studied philosophy, political sciences and logic at the universities in Heidelberg and Mu‐
nich and wrote her dissertation thesis on the philosophy of science. She published several articles on issues on the foundations of ethics and articles concerning the normative aspects of the human body. 20
Bert Musschenga Moral wisdom in medicine: ‘doctor knows best’ revisited Medical ethics should, according to some proponents of an empirical medical ethics, depart from the experience, insight, and arguments of doctors and other medical practitioners. Medical practitioners are supposed to have ‘moral wisdom.’ In this view, the moral beliefs of medical practitioners have a special status. I discuss two possible defences of such a status. The first defence is based on the special status of the moral beliefs of the health professional as an expert in medical ethics, and the second defence on the special status of the health professional’s moral beliefs as a practitioner. The first defence is built up around the opposi‐
tion between experts and laypersons, while the second defence rests on the opposition be‐
tween practitioners and theorists. Prof. Dr. A.W. Musschenga, University of Amsterdam: (born 1950) is Professor of Philoso‐
phical Ethics at VU University, Amsterdam. From 1999‐2003 he was the Director of the Netherlands School for Research in Practical Philosophy. He is Editor‐in‐Chief of Ethical The‐
ory and Moral Practice. His dissertation (1979) combined meta‐ethical reflection upon the concept of morality with sociological, sociobiological and anthropological findings about in‐
ternal and environmental factors that make human morality both necessary and possible. He published monographs on quality of life and on integrity. Besides that, he published many articles and edited many volumes in Dutch and in English on both practical ethical topics and on more fundamental theoretical questions such as the relation between religion and moral‐
ity, moral reasoning, personal and moral identity. In recent years he published a number of articles on the relation between psychological and moral perspectives on moral intuitions. 21
Leigh Turner Social Science Critiques of Bioethics: Errors, Insights, and Future Directions Medical anthropologists and sociologists of health and illness advance numerous critiques of bioethics. Social scientists often criticize bioethicists for promoting an atomistic conception of the self and trivializing the significance of families and communities, making universalistic claims that fail to acknowledge cultural and religious differences, offering philosophical ab‐
stractions in response to particular circumstances and situations, and relating to biomedicine as lapdogs rather than watchdogs. Though many features of bioethics deserve sustained critique, too often social scientists provide an account of bioethics that borders on carica‐
ture. Social science critiques of bioethics are hindered by the errors of equating bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Social scientists engaging and critiquing bioethics need to better recognize the many different methods, theories, and occupational roles of bioethicists. Social scientists can best develop critiques of bioethics by drawing upon research methods from anthropology and sociology and devel‐
oping situated analyses of bioethics as practice, theory, ritual, routine, and institutional role. Prof. Dr. Leigh Turner, University of Minnesota: is Associate Professor in the University of Minnesota, Center for Bioethics and School of Public Health. Before moving to Minneapolis he was Associate Professor and William Dawson Scholar in the Biomedical Ethics Unit at McGill University in Montreal. His prior appointments were at the University of Toronto Joint Centre for Bioethics and The Hastings Center. Turner has held visiting appointments at the Institute for Advanced Study in Princeton, New Jersey, University of Toronto Compara‐
tive Program in Health and Society, and University of Texas Institute for the Medical Humani‐
ties. He is co‐editor of The View from Here: Bioethics and the Social Sciences. Turner’s cur‐
rent research examines ethical and social issues related to the emergence of a global mar‐
ketplace in health services. 22