EUROPEAN COMMISSION
ISSN 1018-5593
RESEARCH ON BIOETHICS
BIOETHICS RESEARCH : POLICY, METHODS AND STRATEGIES
Proceedings of a European Conference ROMA 23-25 November 1995
S. GINDRO
R. BRACALENTI
Report EUR 17465 EN
E. MORDINI
■ir it ■ù -tr ■k i- r
EUROPEAN COMMI SSI ON DIRECTORATE GENERAL XI I SCIENCE, RESEARCH AND DEVELOPMENT
RESEARCH ON BIOETHICS
BIOETHICS RESEARCH : POLICY, METHODS AND STRATEGIES
Proceedings of a European Conference ROMA 23-25 November 1995
S. GINDRO
R. BRACALENTI
E. MORDINI
EUR 17465 EN
Published by the EUROPEAN COMMISSION Directorate-General XII Science, Research and Development B-1049 Brussels
LEGAL NOTICE Neither the European Commission nor any person acting on behalf of the Commission is responsible for the use which might be made of the following information
A great deal of additional information on the European Union is available on the Internet. It can be accessed through the Europa server (http://europa.eu.int) Cataloguing data can be found at the end of this publication Luxembourg: Office for Official Publications of the European Communities, 1997 ISBN 92-827-9587-X Š European Communities, 1997 Reproduction is authorized, except for commercial purposes, provided the source is acknowledged Printed in Belgium
INTRODUCTION
The Biomedical and Health Research Programme 1990 -1994 (BIOMED 2) of the European Commission is aiming at improving the efficiency of medical and health research development in the Member States, in particular by better coordination of the Member States. The work programme of BIOMED includes research on Biomedical Ethics and on the legal, ethical and social aspects of Biomedicine. Research on Biomedical Ethics address general standards for the respect of human dignity and the protection of the individual in the context of biomedical research and its clinical applications, and aims at promoting an open dialogue between all involved parties including experts from different disciplines as medicine, sciences, philosophy, theology, sociology or law as well as patient groups and the general public. One specific objective of the BIOMED Programme, in the area of "Biomedical Ethics", is to address multidisciplinary methodologies, structures and transcultural approaches to solve ethical issues. The European Conference on "Bioethics Research: Policy, Methods and Strategies" which took place in Roma in November 1995 is a concrete answer to this specific objective. Professor Sandro Gindro, Professor Raffael Bracalenti and Professor Emilio Mordini of the Psychoanalysis Institute for Social Research, organized this conference and edited this book.
Christiane Bardoux Research on Biomedical Ethics Medical Research DG XII-E-4
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Bioethics Research Policies, Methods, and Strategies Convenor: Psychoanalytic Institute for Social Research President: Sandra D. Gindro Vice-Presidents: L.Rossi, R.Bracalenti Board of Directors: A.Balestrieri, A.Casoni, P.De Santis, E.Mordini
In association with:
International Association of Bioethics President: D.Wikler Vice-President: A.Campbell Secretary: R.Chadwick Treasurer: H.Kuhse Board of Directors: J.C. Tealdi, P.Singer, H.Kuhse, R.Z. Qiu, S.H枚lm, G.I.Serour, P.Kokkonen, B.BIasszauer, E.Agazzi, M.Mori, S.Gevers, J.van Delden, A.V.Campbell, S.Gbadegesun, R.Chadwick, R.Gillon, J.Harris, A.Capran, R.Macklin, D.Wikler, S.Sherwin
Conference Honorary Committee: E. V.Cosmi {President of the Bioethical Committee of the Italian Council of Research - CNR), F. D'Agostino (President of the Italian Ethical Committee), G.Fregosi (President of the District of Rome), S. Gindro (President of the IPRS), B.Meledandri (Chairman of the Rome Medical Association)
Supported by:
European Commission, Directorate General for Science, Research and Development Division for Medical and Health Research, Biomedical Ethics Responsible scientist: C.Bardoux The Medical Association of Rome President: B.Meledandri, Coordinator of the Bioethical Commission: M.Bernardini The District of Rome
Sponsored by:
The Italian Ministry of Health The Italian Ministry of Family and Social Solidarity The Italian Ministry of University and Scientific Research Presidency of the Health Commission of the Senate of the Italian Republic
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Table of contents The organisers Contributors
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INTRODUCTION R.Bracalenti, E.Mordini: Foreword
15
C.Bardoux: Research on Biomedical Ethics in the European Community
17
S.Gindro: Research in Bioethics: A Bridge Between Science and Philosophy 19
POLICY G.Hottois: Bioethics in a Post-modern World
25
I.de Beaufort: Those were the days
33
M.A. de Wachter: Ethics and public policy. Is PP saving the life of bioethics? 41 G.Huber: Res etica or Ethics in public affairs
47
METHODS PSYCHOLOGY E.Mordini: Bioethics Research and Psychoanalysis
55
SOCIOLOGY S.Hølm: Survey Methods in Bioethics
61
J. van Delden: Roles of Empirical Research in Bioethics
67
R.Chadwick: Complementarity: multidisciplinary research in bioethics
73
ECONOMICS H.Kuheetal.: Qalys: Some Methodological and Ethical Issues
83
K.Kearon: Methode of evaluation of quality of life
93
J.Harris: Prioritising by prognosis
99
EXPERT MEETINGS A.Campbell: Consensus Conferences and Expert Meetings in Bioethics Research
107
STRATEGIES D.Wikler: Strategies for Bioethics Research ยกn the U.S.
115
R.Bracalenti: Is Cross-Cultural Bioethics the Next Challenge?
123
S.Gevers: Bioethics: the development of international standard
129
CONCLUSION A.Pompidou: Research in Medical Ethics and Ethics of Research In the European Union
139
The organisers The Psychoanalytic Institute for Social Research The Psychoanalytic Institute for Social Research (IPRS) was set up on 1987 as an independent research institute in the field of psychosociological sciences. By statute the Institute's primary goal is to deepen our understanding of modem society by means of psycho-sociological tools. Secondary goals are to train personnel expert in psycho-social methods and to promote educational programmes. The key theoretical tool used by the IPRS in its scientific activity is the concept of "Social Unconscious" which was developed by Sandro Gindro during the 1970's and first applied in social surveys in the early 1980's. The concept of Social Unconscious emphasises the need to understand dynamically value conflicts not only at an individual level but also at a societal one. Two orientations has determined the Institute's profile from the very beginning: a particular interest in juvenile sociophatic behaviours and in bioethics. A third area of research had been subsequently identified, that of xenophobic reactions and conflicts linked to ethnicity. These three areas - 1) juvenile sociopathies; 2) bioethics; and 3) xenophobia - are likely to be the most representative of the new kind of conflicts which characterises modern societies. The Institute is currently in charge of three important projects of research in these three areas: 1) A Dream which changes the World : cross-cultural training in secondary schools of Rome (Grant of the City of Rome); 2) Prevention of Sociopathic Behaviours in Juveniles: (Grant of the Benevento District); 3) European Biomedical Ethics Practitioner Education ( Italian delegate - Grant of the European Community DG XII). The special feature of the Institute has been till its birth the interdisciplinary nature of its work. The IPRS has always placed special attention on the need to compare psychoanalytical analyses with data coming from sociology, anthropology and the current philosophical and scientific debate. At the present the Institute joins scholars from many different scientific fields, as psychoanalysis, neurology, psychiatry, psychology, sociology, anthropology, bioethics and philosophy. A small group of permanent staff covering the main areas of research of the institute (i.e.: bioethics, psychology and sociology) scan the questions which arrive. They can then pass on these questions for study to a larger pool of experts in various disciplines. The president of the Institute is elected by the board of directors and is responsible for the implementation of its decisions; he is the legal representative of the Institute. The current president is Prof. Sandra Gindro. In seventies Gindro was president of the Italian Society of Music Therapy and he was charged to run the special unit of Music Therapy of the Psychiatric Hospital "S.Maria della PietĂ " of Rome. Mr Gindro has been
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chairman of the special Committee on Xenophobia and Racism of the Italian Presidency of Council since 1993. He is editor of the journal: "Psicoanalisi Contro" and of the book series "The Social Unconscious" published by the A.Guida Publishers of Naples. His publications include: A Tiresia (1983), L'Oro della Psicoanalisi (1992), Xenofobia: fratelli da odiare (1993), Da Inconscio a Inconscio (1994). The Scientific Advisory Board of the IPRS is currently made by: G.Agich (Springfield), R.Bracalenti (Rome), G.Bolaffi (Rome), E.V.Cosmi (Rome), G. di Renzo (Perugia), S.Gindro (Rome), U.Melotti (Milan), E.Mordini (Rome), T.Tentori (Rome), M.Valeri (Rome). The IPRS is currently member or the Council of Administration of the European Association of Centres of Medical Ethics and. It is institutional member of the International Association of Bioethics. It is full member of the Italian Society for Bioethics and Ethical Committees. In 1993 the IPRS was in charge of the secretariat of the Special Committee on Xenophobia and Racism of the Italian Ministry of Social Affairs. The IPRS is currently advisor of the Italian Presidency of Council of Ministers, Department of Social Affairs. Since 1995 the IPRS has been accredited by the Accreditation Council of the Italian Medical Association (FNOMCeO) to sponsor continuing medical education
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The International Association of Bioethics - IAB The International Association of Bioethics (IAB) was founded at an inaugural Congress held in Amsterdam in 1992. It brings together scholars in bioethics with medical and other health care practitioners to discuss and research the whole range of ethical, legal, social and philosophical issues arising from the practice of medicine and from the rapid advances in the biological sciences. The Association draws individual and institutional members from all regions of the world, and its Board of Directors (elected by the membership) has representatives from thirteen different nations. The current officers of the Association are: President, Professor Dan Wikler (USA); vice-president, Professor Alastair Campbell (New Zealand); Secretary, Professor Ruth Chadwick (UK); Treasurer, Dr Helga Kuhse (Australia). The function of the Association is to encourage free and open discussion of bioethical issues, and to aid practitioners and administrators to reach well reasoned solutions to the ethical problems they face. The Association does not endorse any specific viewpoint in Bioethics, but seeks, through scientific conferences and congresses, to facilitate an exchange of views and to promote bioethical research. The Association provides support and practical help to members and others through its Bioethics Networks, which deals with topics ranging from genetics and birth issues to education and treatment issues and problems surrounding death and dying. The address of the Association is: IAB, Executive Officer Kay Boyle, Centre for Human Bioethics, Monash University, Clayton, Vic 3168, Australia. Tel: 61 3 565 9905; Fax: 61 3 9905 3279; Email: kboyle@arts.cc.monash.edu.au.
The Medical Association of Rome With more than 30,000 members, the Medical Association of Rome is the largest medical association in Italy and one of the largest in Europe. In 1994 the Medical Association of Rome organised a course on general bioethics which was the first course on bioethics promoted by an Italian Medical Associations. The course lasted 6 months involving several scholars of different, medical and lay, disciplines. The proceedings of the course have been published by the Medical Association in 1995. In May 1995 the Council of the Association set up a Bioethical Commission appointing both internal and external members. The task of the Commission is to advise the Council on issues of biomedical ethics. In particular the Commission considers ethical, legal, and social aspects in health care and public health. The Council and its President may request advice on specific topics, but the Commission is free to issue also reports on topic selected by the Commission itself. The advisory reports are not made public but they have to be primarily submitted to the Council. Although the Commission is made by few members (currently 8), it may recruit experts in different fields in order to achieve its tasks. The experts are appointed in a personal capacity and not as representatives of some organisation or public interest group. At the present the Commission is working on: • Informed Consent in specific mental disturbances, childhood)
medical situation (blood transfusion,
•
Child Psychiatry
•
Medical Information and Mass Media
In addition the Bioethical Commission aims at promoting educational and teaching programs in bioethics for members of the Medical Association of Rome.
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Contributors
Bardoux C. Responsible Bioethical Program, E.C. DG XII, 200 Rue de la Loi, 1040 Brussels, Belgium Beaufort I. de Professor, Medical Faculty, Dept. of Medical Ethics, Erasmus University, PostBus 1738 Rotterdam, The Netherlands Bracalenti R. Deputy Director, Psychoanalytic Institute for Social Research, 21 Via Arenula, 00186 Rome, Italy Campbell A.V. Director, University of Otago Medical School, Bioethics Research Centre, PO Box 913 Dunedin, New Zealand Chadwick R. Professor, University of Central Lancashire, Centre for Professional Ethics, Preston PR1 2HE, UK Delden J. van Fellow, Center for Bioethics and Health Law, Utrecht University, Admiraal van Genstraat 55, 3572 XH Utrecht, The Netherlands Gevers S. Professor, University of Amsterdam, Institute of Social Medicine, Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands Gindro S. President, Psychoanalytic Institute for Social Research, 21 Via Arenula, 00186 Rome, Italy Harris J. Director, Centre for Social Ethics & Policy, University of Manchester, Humanities Building Oxford Road, Manchester M13 9PL , UK Hรถlm S. Professor, Dept. of Medical Philosophy and Clinical Theory, University of Copenhagen, Blegdamsvej 3C, DK 2200N Copenhagen, Denmark Hottois G. Director, CRIB, Free University of Brussels, 145, Av. Adolphe Buyl,1050 Brussels Belgium Huber G. Delegate General, Association Descartes, 1 Rue Descartes, 75231 Paris Cedex 05, France Kearon K.A. Lecturer, Trinity College, Tullow Rectory Brighton Road, Carrickmines, Dublin 18, Ireland
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Kuhse H. Professor, Centre for Human Bioethics, Monash University, Clayton, Meilbourne Victoria, Australia Levitt M. Principal Investigator on the BIOCULT Project, University of Central Lancashire, Centre for Professional Ethics, Preston PR1 2HE, UK McKie J. Centre for Human Bioethics, Monash University, Clayton, Meilbourne Victoria, Australia Mordini E. Professor, Psychoanalytic Institute for Social Research, 21 Via Arenula, 00186 Rome, Italy Nord E. National Institute of Public Health Oslo, Norway Pompidou A. Professor, FacultĂŠ de MĂŠdecine, Member of the European Parliament, Chairman of STOA (Scientific and Technological Options' Assessment) Cochin-Port-Royal, 24, rue du Faubourg-Saint-Jaques, Paris France Richardson J. Health Economics Unit, Centre Evaluation, Monash University
for
Health
Program
Sherwin S. Professor, Dalhausie University Dept. of Philosophy, B3H 3J5 Halifax, Nova Scotia, Canada Singer P. Professor, Centre for Human Bioethics, Monash University, Clayton, Meilbourne Victoria, Australia Wachter M.A.M. de Director, Institute of Bioethics, 39, St.Servaasklooster, Postbus 778 Maastricht, The Netherlands Wikler D. Professor, University of Wisconsin Medical School, Program in Medical Ethics, 1300 University Avenue, Madison, Wisconsin, USA
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Introduction
Foreword It is a great pleasure for us to introduce this book which collects most papers presented I n the Euroworkshop on Bioethics Research held in Rome November 23-25 1995. The workshop allowed a full exchange of opinion and promoted open debate among scholars. These scholars, men and women, came from over the world and represent a wide spectrum of opinions and religions. They represented Medicine, Philosophy, Theology, Sociology, Anthropology, Psychology, Psychoanalysis, Economics, Law as well as other disciplines which contributes to the debate. Participants were members of the Boards of Directors of the main international bioethical networks and associations (In tern ation al Association of Bioethics and European Association of Centres of Medical Ethics) as well as members of the Bioethical Commission and the Council of the Medical Association of Rome.
Bioethics has passed through its pioneering period, the time when it needed a basis, a foundation. The word bioethics now defines a rather well defined "interdisciplinary" discipline. Bioethics is field of study and practice that involves professionals of various qualifications, including philosophers, clinicians, researchers, attorneys, and psychologists. Ethical analysis has developed as a useful tool for the evaluation and the management of new technologies, and biomedical ethics has been long of interest to national parliaments. The growing interest in integrating bioethics into policy decisionmaking originates from a desire to understand the ethics surrounding governmental support for biomedical research, delivery of service in scientific programs, and funds for health care. It is to the credit of the European Communi ty (EC) to have understood - perhaps the first among international institutions - this new trend in bioethics. Since 1989 the EC has promoted a number of initiatives in bioethics and has established several working groups. I n 1991, the EC identified general biomedical ethics as a fundamental research area in the Biomedical and Health Specific Program (BI OMED 1). Fourteen projects have been funded within this program during the period 1990-94. I n 1995, allocating 4.4 millions of ECUs on bioethics research, the BI OMED 2 Program provided for two different areas: biomedical ethics and ethical,
15 â–
legal and social aspects of biomedical research. At the present it is the world's unique general fund for investigator-initiated bioethics research. The EC is therefore likely to be the most qualified and proper organisation to promote a debate on scientific basis of bioethics research. Raffaele Bracalenti - Emilio Mordini Psychoanalytic Institute for Social Research
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Research on Biomedical Ethics in the European Community
For some years now, there has been a growing interest at national and international level in questions of bioethics. This has accompanied the development of scientific research particularly in genetics, biotechnology and medicine. The European Community like many other international instances is also involved in this large reflection on bioethics. But the originality of the European approach is to have developed research activities in that field at European level.
An innovative research programme in the area of life sciences would not be taken in a responsible way without a continuous investigation and an awareness of its possible ethical implications. That is why for several years research on ethical aspects is an important part of all the scientific research programmes in the Community and in particular the Biomedicine and health research programme. In the framework of this programme the research activities in bioethics cover a large range of subjects among which the medically assisted procreation, human genome analysis, the respect of the patient's autonomy and the ethical aspects of the decision making process in medicine and the allocation of resources.
Moreover, research on bioethics answers to a political need as bioethical considerations are playing a growing role in political debate within the European Union. In a multicultural, multilingual Europe, there is a need of definition and clarification of concepts, values and principles in order to provide the necessary elements of fruitful political debate on these ethical issues.
Research on biomedical ethics address general standards for the respect of human dignity and the protection of the individual in the context of biomedical research and its clinical applications.
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Research activities are not aiming at harmonisation as such but more at increasing mutual understanding and exchange of views. It helps identify the possible consensus on ethical issues between the different European partners.
Research on bioethics includes many different disciplines like science, medicine, law, sociology, history, philosophy, theology and other partners like patient's associations. The development of European network in that field has given to those who were not traditionally involved in scientific research a first opportunity to participate to an international collaboration.
Christiane Bardoux Biomedicine and Health Research Programme Research on Biomedical Ethics
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Research in Bioethics: A Bridge Between Science and Philosophy Sandro Gindro, President of the Psychoanalytic Institute for Social Research, Rome
In order to give foundation or set principles to a science or an art it is indispensable for such fields of interest to have not only a name but also a specific object, if one does not wish to be bound inside the confines of nominalism of the Ruscellino type, which reduces every concept to a pure flatus vocis which like the wind whisks over everything without it being possible to define where it originates or where it ends. All words are ambiguous, in any language; and, for the term "bioethics", such ambiguity is twofold . First of all its meaning is obscure: Bio-Ethics, that is the ethics of life? Or the life of ethics? Or again life and ethics together? And so on. European and American culture subsumes under this term a number of principles and values which albeit claiming to have absolute standing they are extremely relative and are founded in other sectors. Consequently the term Bioethics is ambiguous, because it designates a set of heterogeneous theories that are difficult to compare. From primary school we have been taught that we cannot add apples and pears unless we refer to both as fruit, but even so the pears go on being pears and so do the apples, each with its own set of characteristics. As a result of this ambiguity it is impossible to identify the groundwork on which to erect bioethical reflections. It is generally believed that bioethics deals mainly with the medical art and its applications and that it has the aim of giving the therapist not so much the technical instruments but rather the theoretical and moral principles that are to underlay his behaviour in every day practice. In actual fact however, this is only one aspect of the much more complex arena in which Bioethics means to operate. Medicine itself is divided into at least two main branches: theoretical-experimental research and the application of remedies to treat diseases, including drugs, surgery and other solutions. Medicine as a whole is the branch of a much broader science which includes, for instance, also Biology, Genetics as well as Physics and Bio-engineering. Today investigators, therapists, politicians
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and philosophers are faced with a series of problems that go well beyond the therapeutic confines in the strict sense of the term. Medicine has always been broken down into prophylaxis and treatment, but today scientific knowledge has stretched the field of prophylaxis so much that certain aspects have escaped control by the physician who sees himself being subjected to behaviours and information which are rooted in fields that are very distant from his. So, would the Bioethics expert therefore be like the sophists as viewed by Plato? Someone capable of speaking about anything, without mastering any specific art? Plato had placed them in the category of Nonbeing: should we therefore decide that the bioethicist as such does not exist and that, consequently, Bioethics as a subject in itself does not exist? How then can we find the foundations of something of whose existence we are not sure? We are back at our starting point: Roscellino's flatus vocis. This provocative statement means to shake the certainties of those who, comfortably anchored to their alleged moral and scientific positiveness, think they know what they are talking about and that they do not need foundations on which to base their new purported science. It is as if an empty word were sufficient to justify any operational choice carrying great moral and scientific responsibility. In this way the field over which Bioethics would have competence could thus cover any eugenic decision: from the practices of exposure of ancient Sparta through to genetic selection practised by the Nazis. If certain principles are not clear, then even genocide or ethnic cleansing may become practices that are bioethically correct. In its effort to give a systematic, albeit ambiguous, ordering to Bioethical research, together with a somewhat limping foundation, the West has come up with two principles. The first principle tends towards the universal, states that in the scientific (and not only medical) field, any relationship with another human being, where the latter for any reason whatever were to be in a state of inferiority, is to be based on respect for autonomy, on the benevolence and on the principle of justice. From this there derives a series of consequences, such as the possibility of lawfully questioning medical paternalism and the assertion of the patient's absolute right of knowing the truth about his clinical conditions and of choosing whether to accept of reject the therapeutic treatment he/she is offered. But in the case of embryos, for instance, the possibility of providing information and consequently of the subject (embryo) making a free choice would be lacking.
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On what foundations, then, are such allegedly universal principles based? Perhaps on the consensus of the majority of bioethicists? Or on the choice of a privileged group of Super-bioethicists, who are in a position to issue absolute definitions of the concepts of autonomy, good and justice? Or is the right to choose once again delegated to the politicians, who indicate the objectives to be pursued on rigorously utilitarian or economic grounds? The dangers are in any case a great many: either one decides to accept the idea that the stronger and more powerful can impose their rule over others, or one must have recourse to absolute metaphysical ideas fashioned according to 17th century models that are difficult to give credit to nowadays. The second principle has to do with the behaviour of the therapist and of any individual who interferes with the life of another human being, and who is recognised some form of specific virtue which guarantees that his conduct will be appropriate. Such virtue should be consistent with universally valid principles; but who is to establish such principles? Is there any chance of having some useful indication for laying acceptable foundations? Perhaps the sole starting point is the value which imposes on any scientist who manipulates human life, from the beginning to the end, that he must show an absolute respect for the life and for the dignity of all men. Any exception to this principle would lead to delirious, dangerous and at times even ludicrous assumptions. Accepting abortion for some situations may easily lead to recognising a full right to life only for this or that male or female adult, of the Arian race, aged between eighteen and twenty-three, who enjoy good health, are unequivocally intelligent and sufficiently happy. Any other model perceived not to be sufficiently "successful" for any reason, would lose the very right to live an autonomous life and could at the most be used as a reservoir of organs after having been suppressed as an individual. In turn those excellent samples that perfectly satisfy the criteria of perfection could be eliminated in the course of wars which are consistent with a eugenic principle because they would ensure that only the strongest, the most intelligent and perhaps the richest would survive. For the time being as a science, Bioethics is still in its very early infancy because it lacks any specific foundation, nor has it been precisely defined. Today dealing with Bioethics means being mad or being heroes. Any scientist however must make the commitment of never stopping his quest nor be deluded that he has reached any certainty: the truth does
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exist, but it is beyond man's reach. At the most one can, one must tend towards it, be aware that at the most on this Earth we will only be able to capture a glimpse of it. And it is only on that glimpse that any construction can be founded.
22
Policy
Bioethics in a Post-modern World Gilbert Hottois, Free University of Brussels, Brussels
1. The Background of Modern Ideal, Values and Utopia Postmodernism can be defined against the background of modern values and ideal. 1.1. First of all against universalistic thought. Universalistic thought recognises only individuals on the one hand, and humanity, on the other. It does not have consideration for traditions, or particular communities. Except one which bears the idea of universality (Reason) and which is identified with the Western tradition. In ethics, Kant has best elaborated the ideal according to which the moral law that the individual ought to follow coincides with the Universal moral law, valid for humanity as a whole. 1.2. Lyotard (a French postmodern philosopher) writes: "One considers as 'postmodern', the incredulity about meta-narratives". The great modem meta-narrative is that of the progress of humanity, guaranteed by the modern values, ideals and tools. This meta-narrative appeals to the whole humanity, to all the peoples: it tells their future and says what they must do. A main function of meta-narrative is legitimisation. The ultimate justification of modem politics has to show how it would contribute to the progress of humanity. Crisis of modernity is fundamentally also a crisis of legitimisation conferring authority other than force. 1.3. The modern meta-narrative is a human history: modern spirit trusts exclusively human capacities for the indefinite betterment of human condition. Modern humanism is a moral of action and responsibility and does not reckon on God or nature 1.4. Among the human means for progress a major function is attached to education and to the development of science and technology. The French Encyclopaedia project of the Lumières illustrates this. Scientific and technological progress appears as the central motor of modern progress in general:
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1) it liberates with regard to the servitudes imposed by nature, thanks to technology 2) it liberates with regard to the irrational particularisms of communities, traditions, religions, even nations, because scientific laws apply universally. They don't depend on particular believes associated with particular world pictures and cultures. The "community of the scientists" has thus a privilege: it is a model for the rest of humanity, because it succeeds in solving problems in an efficient, pacific and universally acceptable way. Education and technoscientific culture should permit all human beings to participate in this universal and ideal community. In the centre of modernity is a utopia that guarantees the symbolic cohesion, the solidarity of the modern world and becoming. 1.5. The crisis of modernity that postmodernism expresses is the rejection of and the disaffection to modern ideals and utopia. Criticism consists in saying: - either, that modernity has failed to keep its promises because it has betrayed its own ideal - or that modernity was a false ideal: its universalism being only the expression of the will to power of one tradition, one particular culture: Western. The evidence for the failure of the modern idea should be obvious in the tragedies of the XXth century: colonialism, association of sciences and techniques with capitalism exploiting nature and people, overarming, ecological disasters, a.s.o. "Auschwitz is the crime which opens postmodernity", writes Lyotard. If rationalism and humanism have permitted such catastrophes, it is no more possible to believe in the history of Modernity. Its meta-narrative of progress is no more than one (bad) narrative, among other, a particular stage setting: the one of the winners.
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2. Characterising postmoderni ty posi ti vely To characterise postmodernism positively one must characteristics which are partly descriptive and partly normative.
use
2.1. Postmodern society - postmodern man - is not fundamentalist. There is no more one a priori, commune, stable origins of legitimisation. The mistake, fault or offence would be: wanting to re-introduce, in a way or another, one base, one foundation, and to subordinate individual rights and liberties. 2.2. Postmodern society is multiple, diverse, fragmented like a mosaic. I t is "cosmopolitan". This complexity and multiple symbolic identity applies at three levels: - planetary: viewed globally, humanity stands under the symbol of diversity of forms of life and cultures - national: postmodern multicommunitary, pluralistic...
society
is
poly-ethnic,
cross-bred,
- personal: postmodern man himself is complex, heir of several traditions, member of many associations; tries believes and commitments have diverse and multiple roots; they do not necessarily form a logically organised whole. The symbolic identity of postmodern people is composite and also changing. Moral values coming from different traditions and environments may co-exist, most often without problems nor conflicts, available in respect to different situations. Tolerance and respect for the other - for the "moral stranger" - is one cardinal virtue in the postmodern world. 2.3. Postmodern society is also characterised by chan ge and exchange. I ts becoming, present and future, is one of continuous metamorphosis, not one of quest (quest of the truth, quest of the sense, of the foundation, of the absolute, of the universal...). PM individual changes and exchanges. He needs a world full of abounding richness (cultural, natural and technical goods). In such a world, two operators of change are specially important: money and technology.
2.4. Postmodern space is that of the bazaar, the super-market or, better, the big world-wide market. I n this space, all strangers can interact following the modality of pacific negotiation, according to personal taste. This space is also the one where individual ingeniousness can express itself. Technical ingeniousness (in the production of attracting consumer's
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goods) and verbal or symbolic ingeniousness (rhetoric of persuasion and seduction). In postmodern societies, procedures, contracts, conventions are to be respected, but only insofar they are rooted in free will and consent of the individual who have concluded them.
3. Some problems and concerns 3.1. Which unifying and organising principle? One major concern about postmodernism is: how can such a world still hold together? Postmodernity often appears as chaotic, unstable, fragmented. This situation is frequently felt as profoundly anguishing, destructive, nihilistic. 3.1.1. One risk is that a will to reunification and stabilisation may take the way of the return to pre-modemity. This is a reaction in favour of a come back to fundamentalism, for instance, moral re-arming. In my opinion, there is no pre-modem solution for the problems of postmodernity. These regressions can only result in profoundly conflictual and destructive situations. Nevertheless they are insisting over the world. Premodern diversity of humankind, with strong monolithic identities was possible only on the background of permanent local wars and on the background of an atomisation of humankind in a multiplicity of cultures that communicate very poorly or not at all. 3.1.2. Another risk consists in the abandon of the linking function to the international and planetary technostructures. There would be no more symbolic unity, no common ideal, but only a kind of meta-level for techno-economic communication and production. Persons and collectivises would participate according to their wishes and, mostly, to their cultural and material abilities and means. On one side, a number of cosmopolitan individuals would fully enjoy the cosmopolitan networks. On the other side, an unequal, fragmented and local humanity would swarm, exploited and receiving, through TV for instance, glints and reflections from the cosmopolitan paradise. This frightful picture corresponds more or less to the reality of our world. 3.1.3. More concretely, these huge problems are linked to the postmodern tendency of a reduction of public space and regulation, in favour of private, individual or communitarian spheres. This is also a consequence of the crisis of modern, universallsm. of
The question of the distinction between public and private is a crux bioethics, bio-politics and bio-law. The solution through hasty
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privatisation, justified by the principle of autonomy, is dangerous when it becomes automatic. It may lead to the growth of inequalities through indifference and egoism toward the "moral stranger".
3.2. Disaffection in respect to science (R. and D.) One characteristic of postmodernism is the radical change of the representation, value and status of science. This change seems partly justified, partly fantastic. 3.2.1. concerning the real change: science has become more and more technique, and one uses today the expression "techno-science". This emphasises operativity and productivity, and the interaction of science, technology, economy and politics. The representation of science has changed so much that some people may say that: "doing science is another way for doing politics". J.-F. Lyotard has specially emphasised the complicities between capitalism and technoscience. 3.2.2. But there is another modification in the. picture of scientific activity which does not concern its complicities but its nature. This consists in suggesting that science is performed like literature, that it is a "language game" among others, a way of giving an opinion, and that scientific discussions are concluded in the seems way as political or aesthetic debates. In short, science, like all the rest, should be considered as a question of rhetoric. Vattimo (an Italian postmodern philosopher) and R. Rorty (en American one) have emphasised "the essentially rhetorical nature of science". 3.2.3. In my opinion, this is misleading and dangerous. One should: - maintain that science is not performed like the purely symbolic or verbal activities. Modern science is a response to human condition in an active, operative, efficient way, very different from purely symbolic (religious, ideological, philosophical,...) answers. - as long as discussions concern facts and causal relations, scientific information is not just an opinion among others. - but when discussions are about values, duties, intersubjective interactions (and not objective interactions), then the opinion of a scientist has no privilege. - one must recognise, and criticise if necessary, the numerous and intricate relations linking R. and D., economy and politics. In conclusion, one should avoid equally to deny the strong difference between technoscientific and purely symbolic response to human condition, and avoid to believe or pretend that science could develop in an a-cultural (non-cultural) way.
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3.3. The problem of autonomy 3.3.1. Autonomy is a modern very important value. But Kant conceived it as equally personal and universal. He conceived it too as an ideal never perfectly realised on earth. And thus always to foster for oneself and in the other person. Principle of autonomy and principle of beneficence were profoundly bound. 3.3.2. In postmodern society, personal autonomy remains essential, because it is the only origin of moral authority and legitimisation, after the decline of the great modem or premodern meta-narratives and myth. But separated from the universalist ideal of education, emancipation and equality, appealing to autonomy may lead to permitting almost anything. It seems that it would be enough that a person be an adult to declare him or her fully autonomous, whatever tries or her material, cultural or psychological situation. Becoming a formal or juridical concept, the principle of autonomy leads to indifference, egoistic individualism, and exploitation. It leads to the domination of the sliest or the more powerful. An important part of liberal bioethics may result in such abuses. From this point of view there should be no objection that a poor person sells, "freely" his kidney to a rich one, on the Big Market. The interplay of personal autonomies can work ethically only in an ideal society. We are very far from that world. 3.3.3. But there is also a danger in criticising, without caution, the principle of autonomy, and to suggest that one should go back to paternalism and dirigism. Why? Because these are to often and to easily conceived as ultimate ends on their own, and not as palliatives, needed only insofar and so long autonomy and emancipation of persons are defective. The risk is to go back to morals and politics that pretend to do the good, even against the will of people.
3.4. Procedural ethics and moral life at two levels In the postmodern societies where exists no common moral foundations from which one could derive answers in case of moral conflicts procedural ethics of discussion seems the only way to avoid violence or radical fragmentations among "moral strangers". I'd like to stress one distinction about this important master of contemporary moral philosophy. The ethics of discussion can be understood in two ways: - a radical postmodern one (Engelhardt, for instance). One postulates that there are no good or bad agreements or consensus, but
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only factual agreements; that there are no bad or good arguments, but only efficient or inefficient ones, etc. The perspective is purely rhetorical. - from the other point of view (see Habermas or Apel), one tries to preserve some aspects of the modem ideal, distinguishing between more or less rational arguments, and conclusions which are more or less universally acceptable... In my opinion, the second approach is better. It is also more difficult and contains some risks (the authority of the rational). But rationality must not be imposed from outside or by particular people. It should come out more freely from the meeting around the table of the greatest number of interested people. A maximal pluralism should render more difficult strategies and unfair agreements, as well as the use of sophisms instead of arguments. One precondition for the practice of procedural discussion ethics is the ability, for each participant, to cope with two levels of moral life. - The first is the level of personal convictions, believes, that we share with a particular community (religious, for instance) and that offer a determinate picture of the good life. - The second is meta-moral: it is the ability to recognise the moral liberty of the other person, even if tries or her picture of good and bad is very different from ours. This second level makes possible the discussion, and some co-operation among moral strangers, the possibility of some consensus. It makes also possible, sometimes, the evolution and the becoming closer of the persons engaged in the discussion. From a moral point of view, it seems to me that the greatest danger with procedural ethics is that it could become, being procedure, purely formal, a kind of technology for solving moral conflicts. In that case, it probably would solve no one really. 3.5. Symbolic postmodernity and technoscientific postmodernity In my fast point, I want only to indicate a distinction which could take more importance in the future. When postmodernism stresses diversity and freedom of choice, one thinks of diversity of goods, cultures, artefacts. Postmodern philosophers always talk about cultural or symbolic diversity. The development of powers to manipulate, to transform, to reconstruct in the field of biomedical technosciences may lead, and is leading, to possibilities of diversification in a totally different sense. This is the artificial diversification of the living beings, non human (transgenics) and human. This refers to human reproduction, human body, human genetic structure.
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There is a logic of liberal postmodern thought stressing the autonomy of persons, to see no ground for prohibiting biophysical transformations in consenting individuals or communities. This could lead into a diversification of human species that would not be a simple cultural or symbolic fragmentation. This is not for today nor, probably, for tomorrow. But, such questions are beginning to be asked, especially about genetics. Allow me to conclude with a short quotation from Engelhardt, which is a kind of postmodern technoscientific summit: "Major changes will be unavoidable if we remain a free and technologically advancing species. If there is nothing sacred about human nature, we persons are free to refashion it, as long as we do so prudently, with consenting collaborators. In the end, this may mean so radically changing our human nature that our descendants may be seen by subsequent taxonomists as a new species".
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Those were the days Ines de Beaufort, Erasmus University, Rotterdam
25th of November 2025' Rotterdam, Europe
THOSE WERE THE, DAYS: LOOKING BACK AT THE FUTURE Nowadays in 2025 there are no more workshops. Well I'm too old to travel anyway. There is now, of course, no need for Bioethicists to meet face to face anymore - the information superhighway has put paid, to that amenity. Already at the beginning of the millennium the European Commission devoted all the Biomed 4 funds (or was it 5?) for Research on biomedical Ethics and Ethical, Legal and Social Aspects, to financing an electronic network to which all European bioethicists are linked. Good service: electronic publications, laws, reports, the computers are humming happily and everything is available to all participants. No more excuses. Apart from the small problem that reading all that is a more than full time job. But then these are the days of summaries and abstracts and mastering the art of selective reading. Meetings are, of course, held by videophone. Efficient. I do miss the dinners though. Far more interesting than the meetings, I often thought. And the wine inspired conversations... Let me take you back to the optimistic nineties of the past century. Without chronological handles I get confused. From popular to popularisation Those were the days, my colleagues. Bioethics was popular. It was considered important. Optimism reigned. Many studied the field. One still believed in normative conclusions and policy statements based on those conclusions. We travelled and met our European colleagues. Had we had the money to do so we would have travelled farther. Medical practice and research provided us with a new problem at an average of one a week. Many politicians suffered from bouts of severe ethicoholism, for which, thank God, there was no cure. Medical ethics - my own field - was professionalized, having had the image of a hobby of a few 'deviant' idiosyncratic ethicists. In the beginning 'real' ethicists, the moral philosophers - the ones with a philosophical education I mean - were called
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upon. Simultaneously the call for multidisciplinarity became very strong. Those who worked with bioethicists in the field of medical ethics, after a few years and a few crash courses in ethics, also called themselves bioethicists. (Very expensive courses, mind you. The knowledge acquired in a course was proportional with the enrolment fee. So they said.) In 2003 there were only two ethicists on the Board of the IAB. The rest was replaced by representatives of patient and consumer organisations and politicians. Apparently in Biomed 3 only one project was funded that was submitted by an ethicist. All the other projects were joint ventures by doctors, lawyers and health care economists, selected by civil servants. If an ethicist got lucky, he could attend a workshop and perform a small task. One felt in real life like the famous violinist in J.J. Thomsons analogy: dependent for life support on someone else. And we all know about the moral obligations of the person providing the life support.... Some ethicists, especially the older ones looking forward to their retirement, prided themselves in their success. They argued that this was there raison d'锚tre: making themselves superfluous by teaching professionals how to tackle ethical issues. Others were sceptical and wondered whether they by their zeal to involve other disciplines, had made the field look too easy, whether by carefully stepping around the ethical mines in the minefield and pretending they weren't there, they in fact had sacrificed the field itself. Popularisation led to simplification which led to deprofessionalization. If you give the impression that everyone can 'do' ethics, many will. Especially in an era in which ethical issues were considered very important. The tragedy of postmodern society? (Or was post-modernism rather a diagnosis than a therapy, and even as a diagnosis rather vague?) Anyway: societies and individuals were confused, that much was true. How eager we were to be understood by non-philosophers. One of the problems was, in my view, that the experts in other disciplines, in particular the doctors, did expect us to know and understand the medical details of issues. There was, however, no reciprocity. They were not supposed to study in depth ethical theory. Some did, of course, but not all of them. Many chairs in bioethics were given to physicians with some ethical expertise. ('Crash course' or 'Instant' professors.) I'm afraid I'm partly responsible. I helped to teach doctors. Thinking they would become physicians with some elementary knowledge of ethical theory. Even that would have been quite an accomplishment, I naively thought. Medical faculties preferred them because they were doctors - only doctors really understand doctors (now there's the spirit of multidisciplinarity!). Some, I hasten to stress, became excellent bioethicists; others never got past the-four-principles stage in its most primitive form.
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It's not that I didn't believe in multidisciplinarity. I did, I still do. But in a modest form: working closely together in defining problems and using each other's research results, but still maintaining individual disciplines, making a rainbow. Not the big melting pot with the greyish soup it became. Like these buffets: it looks beautiful, but if you have all the dishes on one plate it will all taste the same (fish or potato, generally). There was an important paper published in 2001, by professor Hølm, called: 'Popularisation: ethics' terminal disease. How medicine did kill ethics after all.' Or may be it was 'How medicine couldn't save the life of ethics after all.' I don't recall. The differences between killing and not saving lives had become more vague anyway. We were guilty of simplification. We wanted wide audiences. Weren't we discussing everyone's problems? We were. That was what it was all about. I remember that in my early days as a professor I wouldn't have dreamt of using slides or other audiovisual aids. Nor would I have anything to do with 'multiple choice examinations. Arrogantly I thought that was for the academically challenged. Ten years later we in Rotterdam were the first to present our own ethical 'son et lumiere'. A big hit, I dare say. We developed multiple choice examinations for the whole country. C'Who invented the categorical imperative: a. Aristotle b. Kant c. Einstein; "Why is Prof. Singer a vegetarian?" a. because eating meat is unhealthy; b. because there are no farms in Australia c. because he defends animal rights. "Why is euthanasia accepted in the Netherlands?" a. because we don't want to spend money on dying patients b. because we like to argue with the Vatican c. because we are immoral anyway.) I remember, I'm a little ashamed to tell you now, writing scenarios for a very popular Hospital soap opera for Eurotv, called Saint Ethicswhere. Okay, the pay was good, and it was fun doing it. All the classic cases of medical ethics, of course, were patients in Saint Ethicswhere. I also seriously believed that by telling stories, by giving faces to problems, I could reach a wide audience, make them think about life and death, having children, genetic developments, etceteras. My narrative phase. Probably in fact it did make 'ordinary' persons discuss medio-ethical issues. (Received a lot of mail when the young French hospital ethicist starts an extramarital affair with the gorgeous Italian surgeon in the fourth episode. So much for multidisciplinarity. P eople didn't like that. Ethicists weren't supposed to have affairs. Like royalty. Very sensitive issue in Britain. But then: she was French. It might, after all, have been better if she had been the Italian surgeon, and he the French ethicist. Anyway her authority was undermined. Therefore in the 7th episode she confronts the choice of participating in a screening programme for Alzheimer's disease. The surgeon leaves her, he cannot cope if she has the predisposition. Again a lot of mail. 'Serves her right!' 'Don't fall in love with an Italian.)
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The schism between bioethics and moral philosophy Anyway, there was a high price paid for popularisation. It led to the disappearance of ethics within the philosophy departments. 'Real' philosophers didn't want to be associated with these too popular and too successful bioethicists. (Some spite also, I suppose.) A 'good' bioethicist was at first judged by the number of committees he sat on, and then by the number of television appearances per year. (Go public or perish.) They even came up with a refined counting system, called the 'network index'. (Being young, female and direct, I then reached my academic peak.) The philosophers also argued that ethicists could look after themselves financially and neither deserved nor needed money that could be spent on less popular - but, of course, far more interesting - philosophical fields. That led to the schism between moral philosophy and bioethics in many countries. (Except, if I remember correctly, in France where links between bioethics and metaphysics were upheld, at least in some faculties. Quite stubborn, the French, when it comes to traditions. That is: their own traditions. A famous Dutch moral philosopher was supposed to restore the schism by chairing the European Society against Quack Ethics, but he wasn't appointed. Strangely enough, the Dutch weren't very successful with important international appointments, those days.) This finally meant that those who were in fundamental ethics and not in applied ethics, had to choose. After a short phase of co-operation with the applied ethicists, they decided they were better off without them. They reunited in the society 'The Ivory TowerV There were not many of them because they had big funding problems; they've also refused participation in the network. They, as far as I know, still publish their own old fashioned Journal called, I think, the Journal of Historical and Theoretical Ethics. It started with a famous editorial called: 'After amateur ethics. Taking ethics seriously again.' imagine: it is still sent by mail. No urgency, I guess. One cannot subscribe, one has to be invited to become a member. I wonder who pays? Frankly, I really thought that the initial involvement and co-operation of moral philosophers, who had not expressed much interest in bioethical issues say before 1990, had a lot to do with the availability of funding - so much money for applied ethics - (all relatively speaking of course, don't misunderstand me. It is just that compared with the limited amount available previously it seemed quite a lot.) - so much public attention and political interest. Temptations that are hard to refuse, even for a moral philosopher. But they initially used, or should I say, misused (?), the field of bioethics for the furthering of their own interests. They, of course, said: "what is in the interest of ethics is by definition in the interest of bioethics". But somehow many didn't really seem to care about the reality of medical decisionmaking. That field was just a useful pool for examples to illustrate their own theoretical ideas, but not with the intention of trying to solve the problematic situations. A real patients' case provided an interesting proving ground on which to rethink the right to die. How the life of the particular patient did in fact end and if something could have been done about it, I'm
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not sure if they cared. Yes, I admit, there is some resentment on my part. Probably I don't do them justice, probably many of them believed that their work would prevent applied ethics from becoming a practice without any theoretical foundations and without theoretical renewal and inspiration. Anyway, this coincided with what I called my 'beeper phase', very much practice oriented. A reaction. Ah, to have reached the age to discover the dialectics of one's own career. I was always available at the hospital for consultation in difficult cases. My small Ethiquerette... Actually, often at the bedside. It was a fascinating period. I didn't get much reading or writing done. Very little time for reflection. Followed my moral instinct or intuitions, shooting from the hip probably. With style and often hit, but still: first-aid-ethics. Profited from the alibi function: "we did consult the ethicist in attendance..." The ethics business Where are we? Around 2005, I think. Those were the days of the ethics business or the normative industry. For a decade, as I told you, governments spent considerable sums on ethics research. More and more, whether you got a proposal funded was a matter of opportunistic chance. If the government or another funding agency thought it was too 'dangerous' a subject, no funding. If the timing was right and they could use the results for political purposes, a high chance you would get funding. It often provided an alibi for not regulating an issue: let's wait for the results of the research, postponement strategy. The politicisation of ethics. Always admired those colleagues with the extra sense for national and international political correctness. Those who knew which subject or which conclusions were 'en vogue'. Anyway, around 2005 they stopped funding saying: "we have provided the first impetus, now you are on your own. You are established, find your own sponsors." Some were lucky enough to have jobs in hospitals and medical faculties. Many weren't. They became dependent on e.g. pharmaceutical industries, insurance companies, churches, etceteras. The free market of right and wrong. How it enhanced our cameleontic abilities. I had a project funded by a toothpaste company, provided I defended that bad breath was immoral. Well, that wasn't too difficult. That led to a grant of a chewing gum company, resulting in a thesis called 'An analysis of the ethics and aesthetics of chewing gum', which led to a workshop with dentists on the ethics of preventive dentistry, funded by both the abovementioned companies. Which incidentally, paid for my first set of false teeth! You had to sell yourself and the competition was very tough. All ethicists were for example invited to submit programs in tenders. They'd all say 'we are the best'. The one chosen would be the one with the
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hypothesis most agreeable to the funding agency in relation to a good price. All this selling did damage one's integrity. The price paid for survival. A colleague of mine went into private practice. He advertised: "Am I obliged to tell my husband I'm having an affair?" "Should I have the sex of my foetus checked?" Sound Advice by Professional Ethicist 24 hours a day. No solution, no pay." He did quite well actually. Financially speaking, that is. The 'individual advice' part saving him from the constraints of consistency. A new professional emerged, of which he was on of the first, the so-called 'justifiers', who would sell their argumentative skills to whoever paid for it. Of course, it was detrimental to the reputation of bioethics in general. It was quite different from football players wearing Philipsshirts. (Mentioning Philips nowadays pays for my electronics equipment and I really need that for the network.) They would still be judged by the quality of their football playing. The worst thing was the avalanche effect hospitals would say: "so and so managed to get funding from the industry, you can do that as well." Jobs were cut, whole institutes disappeared. It was also bad for, for example, scientific advisory committees for national and international governments and agencies. They could not offer much money for the tasks involved. The competition offered more and so bioethicists could not participate any more. Independent research became a scarce good. Ethics, like 'care' for that matter, became a product, a commodity to be marketed and sold. And market it we did. We spent more time lobbying than reading. Also some of our traditional tasks within medical faculties and hospitals disappeared. For example, there was this computer programme I was involved in developing. (Incidentally that paid for two Ph.D. students.) At a certain moment a clever manager had realised that ethics committees in hospitals that reviewed research proposals were quite expensive. Different committees also held different views leading to differing conclusions, which was very inconvenient for researchers, pharmaceutical companies and other research funding organisations. Ten experts designed the computer programme 'Helsinki Perfect'. It had all the criteria for the review of research and a complex weighting system. It was brought on the market and immediately sold to all hospitals where research was done; it even produced an informed consent form. That was the end of the ethics committees. It was a good programme: we compared its results with the review by two well known and experienced ethics committees, discovering that they sometimes overlooked things, or that their final judgement was influenced by the mood of the committee during that meeting (the fragile human touch, you know), etceteras. Of course, the programme couldn't handle totally new ethical research issues, so some national committees continued their work.
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One of the effects of the struggle for survival by funding, was that, in order to distinguish your group or your approach from someone else's, you had to say that you had a totally different approach or views and that the others were not half as good. This actually proved to be counterproductive. "What do we need ethicists for? They each give you a different opinion anyway." (Both a matter of survival as well as inherent in the discipline - it's in our genes to disagree.) "We are better off without them." Empirethics All this led to the 'empirethical' phase. Population polls were used to decide about ethical issues. If 80 % of the population thought that euthanasia was justified then it was considered to be justified. Democracy at its best? Many proposals for medical research devoted a smaller or larger part of their budgets to these 'referenda' in order to 'solve' the ethical issues. An interesting shift from normative theory to descriptive ethics. We tried to explain that one cannot 'prove' arguments in ethics by counting. In political decisionmaking it could play a role, checking whether a country is ready for a certain policy, but it is not ethical 'proof. "So what", the proponents would argue, "If the majority of the population already agrees, why have an ethical debate at all? No need to." 'Fortunately', regarding some issues the public was strongly divided and the results of polls did not provide any guidance for policymakers. Did that lead to a revived interest in ethical argument? Yes. indeed it did. But it came hand in hand with a development I will call the 'Guru-era'. Guru-era Ethicists were replaced by moral Gurus. They were extremely successful. Instead of expressing doubts and questioning self-evident 'truths', they provided clear cut answers. There was 'morally right'. And there was 'morally wrong'. No 'ifs', 'buts', conditions, etceteras. The public yearned for answers. They wanted their life to be made easier, not more difficult. Too much autonomy makes one weary and tired. Gurus profited. ( 'The good life according to X.' 'All you need to know about ethics', 'Solving ethical problems in six steps.' ) What a relief not to have to think things through. Rhetoric and charisma replaced arguments. I have nothing against a dose of rhetoric. Used it myself. Seldomly and tastefully, of course. But in the Guru-case it was an empty shell. The gurus came and went. I forgot their names. They didn't last as individuals; they did last as a phenomenon. Probably that has always been there.
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What went wrong? It was a combination of many factors. Societies' confusion. Multicultural societies and the lack of social cohesion. The consumerist mentality. The growing number of new technologies and the ethical issues involved. Expectations that were too high. Methodological limbo's. The popularity of ethics in political circles, I don't know. I talked about this in a workshop in 1995, I think it was. Wasn't taken seriously, as usual. Such is life. Probably something wrong with my presentation, or worse, my ideas. May be the view was too gloomy in that era of optimism about the future of Bioethics. "Those were the days, we thought we'd never loose, Oh yes, those were the days."
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Ethics and public policy. Is PP saving the life of bioethics? Maurice A.M. de Wachter, Institute for Bioethics, Maastricht
What kind of question is this? Several times, so the word goes, ethics and bioethics were either saved or killed by other disciplines. We heard about "How medicine saved the life of ethics" in 1982 when Toulmin told us it was because medicine had forced ethics to become practically inclined (Toulmin, 1982). Around 1990 we heard "How law killed ethics" when D. Hyman scrutinised a set of articles written by George Annas and concluded as follows: 'once the law starts dictating the framework for clinical decisions, what remains for ethics?' (Hyman, 1990) In 1992 Barry Hoffmaster asked: "Can ethnography save the life of medical ethics?" (Hoffmaster, 1992) Pointing to various cultural contexts the author tells us that by context we mean the facts, situations, relationships and circumstances that arise for individuals at given points in time. Context, of course, is vital to ethics as we have known for centuries and in view of which theories on 'circumstances' were developed. One of the latest examples being 'situation ethics'. It would seem, therefore, that biomedical ethics is a sickling which is constantly in danger of dying if it weren't for other disciplines that rushed to the scene in order to reanimate the patient, orto declare him dead. We might (must) turn to yet another version of the same theme and ask whether public policy is saving the life of bioethics. Let us briefly survey the various aspects that are part of the question. For now I see four such parts: 1) To raise the question seems to affirm that the existence of bioethics is or might be threatened either from within or without and in need of being saved?
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2) And why would bioethics, which in principle is able to develop its own moral policy, expect to be saved by public policy which, to all evidence, is more legal than ethical in nature? In other words: what is it that PP has and which bioethics does not already possess? 3) Shouldn't we formulate the question the other way around, viz. Rather than being saved, is it perhaps more the case of bioethics being swallowed up or even killed by public policy? 4) Underlying the question is a suspicion that bioethics might be abdicating its true 'ethical' nature by becoming subservient to public policy? Many of the above questions reflect some doomsday view of bioethics, its future, and its role with regard to public policy. Fortunately, the literature also holds some more up-beat titles. For instance the one Dan Wikler wrote in 1991 where he asked: "What has bioethics to offer health policy?" A recent article illustrates well where the question of bioethics and public policy starts: namely in "a morally problematic situation in need of a decision about action or policy to be adopted." (Crosthwaite, 1995). Of both of these needs for action and/or policy we have plenty of cases today. There are numerous morally problematic situations that are brought to our (bioethicists) attention. There are endless lists of issues to be put onto the agenda of policy-makers. To name just two major ones: fluoridating public water supply, and the introduction of clinical genetics. It seems fair to say that our theme, viz. the rapport between bioethics research and public policy, is but another instance of how ethics and public policy relate. How these positions translate into the relationship between bioethics research and public policy is precisely the topic of our first session. In order to better grasp the relationship, let us first look at the two individual partners: ethics and public policy. What are the concepts: ethics and public policy? In this audience it is not so much the term 'ethics' which needs further clarification, but rather the term 'public policy'. To that effect I like to quote two authors in the field, Gibson Winter and Joseph Coates. Gibson Winter :"Social policy is an aspect of practice. To this extent it generalises society's goals and projects; it gives shape to societal values. The everyday world is a world of coping, doing, mastering, and shaping. Reflection occurs within this world as an enclave of theory in the interest of practice." (Winter, 1966, 260.1 like the way Gibson Winter positions ethics as an enclave of theory in the interest of practice.
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Joseph Coates: "Policy is not action. A policy is a statement, either explicit or implicit, directed or derived, as to what are the goals and intentions of government, a branch of government, an agency, or some other unit of organisation. Policy itself is given meaning and set into action through policy actions such as legislation, programs, projects, regulations, taxes and other operations of the instruments of government". (Coates, 1978, 36) In Coates' text I have to look for a place for ethics. Perhaps we might house it under programs, that is under 'research programs'. On the other hand, this author clearly identifies 'public' with 'government'. This, of course, is only one interpretation of the word public. But I think it useful to allow for this restriction in our debate. In view of our debate I should like to proceed in the following way. Of the questions mentioned thus far I will address the one about what it is that public policy has and bioethics is missing. Second, I will look at the positive rapport between bioethics research and public policy. What is it Public Policy has and bioethics is missing? Gustafson (1990) pointed out that, not only the strictly ethical discourse, but medical policy discourse as well functions morally. The President's Commission's Reports are seen as multidisciplinary instances of a policy discourse that functions morally. The difference between both types of discourse can be perceived from their prime questions, that is the question with which they start the discussion. The ethical discourse works from the question 'What ought to be the case?'. Policy discourse, on the other hand, usually asks 'What is possible?'. For instance in the field of distributive justice in health care, what is possible will depend on resources available, needs expressed, institutional arrangements in place. To quote Gustafson lhe ought questions are answered within possibilities and limitations of what is.' I should like to agree with this approach. Indeed, I would continue the line of reasoning by pointing out that both the ethical discourse and the policy discourse will lead to a policy of their own: viz. a moral policy and a public policy . Moral policy, then, is about morals and nothing else, whereas public policy is about morals and many other things, e.g. its feasibility, which definitely cannot be reduced to morals. Still we may ask: is there an ethic of policy makers: e.g. to be complete, honest, unbiased, double checking information on data, exploitation of assumed values, setting priorities for the spending of research funds? What then is the role of ethical discourse proper within the elaboration of public policy? Gustafson mentions three such roles: ethical analysis and argument, he says, 'articulates ends, refines the criteria for the moral choices
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embedded in the empirical, and facilitates moral self-evaluation.' Put another way: 'Policy discourse without ethical discourse easily degenerates into satisfaction with the merely possible, with assumed values and procedures, with the domination of the economic and institutional considerations.' (Gustafson, 1990,141) The conclusion which seems to be justified is that public policy, indeed, needs bioethics. In turn, however, this need may stimulate bioethics, and thus, in a way, keep it alive. Bioethics research and public policy We are all aware of the fact that the word 'and' in the title of our First Session "Bioethics research and public policy" has many meanings. The two major ones seem to be about how bioethics research helps to form public policy, and about how public policy decides what bioethics research will be done (seemingly only a variant of the previous rapport, but with a different power structure). Of these two I should like to address the first question, viz. about how bioethics helps to form public policy. One answer given to the question is to say that the best hope for bioethical contributions to health policy are: conceptual clarification, logic monitoring, and argument from common assumptions' (Wikler, 246). You will have noticed a certain parallelism between what Gustafson calls the three roles for ethical discourse and what Wikler call the contributions of bioethics to health policy. Gustafson, indeed, speaks about 1) to articulate ends, 2) to refine criteria for moral choices, and 3) to facilitate moral self-evaluation. Wikler, for his part, speaks about 1) conceptual clarification, 2) logic monitoring, and 3) arguing from common (value) assumptions. Common to their views is one major task, viz. a role of clarifying ends and means. Perhaps the roles of moral self-determination and the arguing from common value assumptions also converge. Here, then, would certainly be important areas for a specific bioethical input into public policy making. Next, as with Gustafson's point about the contribution which ethics make to public policy, it is possible to point out that moral philosophers who endorse moral perspectives should make those available to the policy make. Crosthwaite holds this position because "engagement in moral deliberation about the rightness of something is a preliminary to and component of any decision about social policy." (Crosthwaite, 1995) But then, the same would apply to say, policy analysts who "as the brokers between the scientist and the policy maker must know the sources of data, ensure consideration of the full range of options, challenge assumptions of scientists and policy makers, and make known their own philosophic and value perspectives." (R.S. Hauff)
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Certainly in a pluralistic society policy makers 'seek to accommodate a variety of belief systems and interests rather than elevating the views of one single group to the status of national policy. Policy-making also attempts to achieve maximal continuity with some of the generally accepted principles within society." (LeRoy Walters, 1987, 3) What about this 'accommodating a variety of belief systems'? It would seem that this is a form of flexibility which most moral systems would not have. Conclusion I should like to draw two conclusions: 1. From the definition of public policy I retain that ethics functions as an enclave of theory in the interest of practice. For bioethics research this means that its mandate for public policy is one of theory. Bioethicists, then, should resist the mistaken prioritising of practice above theory. 2. Rather then asking who is saving whose life, it seems plausible to talk about mutually complementary roles and cross-fertilisation: bioethics secures the ethical foundation of public policy. In return, public policy translates' ethical theory and argument into practice and action. Here, then is a win-win situation for both partners. References Coates, J.F. (1978) What is public policy. In: Judgment and decision in public policy formation (ed. K.R. Hammond), Boulder Colo., The Westview Press, 337 Crosthwaite (1995) Moral experience: a problem in the professional ethics of professional ethicists. In: Bioethics 9 361-379. Gustafson, J.M. (1990), Moral discourse about medicine: a variety of forms. In: Journal of Medicine and Philosophy, 15 125-142. Hoffmaster B. (1992), Can ethnography save the life of medical ethics?, In: Social Science and Medicine 35 1421-1431 Hyman, D. (1990), How law killed ethics. In: Perspectives in Biology and Medicine 34,1 134-151. Toulmin, S. (1982), How medicine saved the life of ethics. In: Perspectives in Biology and Medicine 24 736-750.
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W盲chter, M.A.M., de (1978), Moral policy and public policy. In: Trends in business ethics (ed. L.M. Stallaert), Leiden, Martinus Nijhoff Social Sciences Division,, 51-62. Walters, LeRoy (1987) Ethics and new reproductive technologies: an international review of committee statements. In: Hastings Center Report, Special supplement, 3-9. Wikler, D. (1991), What has bioethics to offer health policy? In: The Milbank Quarterly 69 233-251. Winter, G. (1966) Elements for a social ethics: Scientific perspectives on social process. New York, The Macmillan Co., 260.
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Res etica or Ethics in public affairs G茅rard HUBER, Association Descartes, Paris
The issue I propose to develop in this presentation is the following: the rightful place for bioethics in the domain of public affairs? What lessons should we draw from answers to this central question, with regard to research in bioethics? 1. Relevance of the question. It is fitting - in my position not only as Delegate General for an Association supported by public funds (all the more so when it is devoted to studies in the bioethics field) but also as Chairman of a Management Group for a Concerted Action in biomedical ethics, in the framework of the European Community BIOMED1 programme - that I should fully agree, as I do, with the need to analyse the relations between the res publica and bioethics, or to put it differently, between public interest and bioethics (and to seek to improve on them), in a word, res etica. We now note the existence of operational, ethics-oriented structures at the heart of all European Union countries, in which biological and medical sciences are currently entering a phase of extensive applications. These structures intervene, either upstream or downstream, in a process designed to enhance the development of these sciences, while at the same time ensuring that basic human rights, notably that fundamental right of human dignity, be upheld. We can now also observe an increasing corpus of legal provisions and committees moving into (and becoming involved) in this area. Within the EU countries, in the Council of Europe and UNESCO, the level of interest for res publica and the support that can be provided by bioethics is more and more self-evident, yet coming in various formats. At the next G7 summit, the Ministers in charge of Science will be discussing the genome issue. Given the rapid creation of national ethics committees, further texts in our national laws, debates in European Parliament, major Community programmes (BIOMED 1 and 2), and major work that should lead to the creation of international tools (such as UNESCO's International Committee
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for Bioethics, for the human genome question) or conventions such as the forthcoming European Convention in Bioethics of the Steering Committee of the European Bioethics Council), and the growing number of actors who are devoting some considerable fraction of their professional time to "doing ethics", whether in theory or in practice. In terms of scientific research, scientists who, until recently, considered that they were essentially biologists, have either suddenly become aware that they too were implicitly "doing ethics", or have decided that bioethics is a respectable area worth exploring per se. Medical and scientific institutions, both national and international, have been led to reassess their activities by considering them in the light of compulsory conventions of legal stipulations. The thematics of bioethics have thus spread. Questions and issues arising are becoming increasingly complex. They show a dual dimension: that of meaning (the underlying fundamental concepts) and that of norm (appropriate rules and regulations). There are now increasingly numerous areas of overlap between the "hard core" of bioethics (ethical reflection on biology, Hippocratic medicine, scientific medicine) and the ethics of certain approaches to Human Rights or philosophy. Such initiatives prove that, henceforward, there is room for multiple points of view of the res publica in regard to bioethics. The handling of public affairs now places high expectations on bioethics But what are these exactly? 2. Expectations for handling of public affairs, from a bioethics point of view. In the running of public affairs, bioethics can be seen as an ally of biomedical sciences and rights, with an observable (and concomitant) race engaged between the latter. When bioethics addresses the question of rights, it is the civil and medical rights which are primarily concerned. Indeed, it is becoming more and more obvious that bioethics is developing on the basis of delays incurred by rights to come up with appropriate legal frameworks adapted to the new situations arising from extensive applications of science and biomedical technologies Indeed, for many years, there has been a mental obliteration of any forecast as to what situations might be forthcoming from the development and application of biomedical science and technology. We have every reason now to understand that such delays are not only related to current events but, to a certain extent, are structural and that this phenomenon will probably worsen with the advent of predictive medicine. How, we surmise, can a right encompass a forecast?
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Numerous democratic actors seemingly show a prior lack of confidence in rights There is a curious shift in viewpoint: instead of having rights governing human and social relationships of their own accord, we invent a new approach, based on realities and technoscientific practice, largely over-rated, to the point that there is a belief in definitive definitions in our understanding of mankind today, returning thereafter to rights, while at the same time creating a major illusion about the possibility of other forms of binding rules between men. Very often, at this point, we acknowledge that we have reached new limits and have to turn back again to rights, even though this very branch was inevitably weakened in the process. When bioethics addresses the question of biomedical science, one of the predominant messages of bioethics is the transmission of the remembrance that, not so long ago, rights and Law were systematically and foully violated, under the dictatorship - to recall but one example (by no means exclusively), National-Socialist Germany, which used its scientific community (anthropologists, biologists, doctors, psychiatrists,...) to commit nefarious deeds - a dictatorship which arose within the framework of a Constitution (the Weimar Constitution). I n this instance, bioethics stems from the fear that rights will not prove sufficient ramparts against the all-destroying power imbedded in politics whenever it turns its back on its unifying role and succumbs to the fictional credo of purification, fuelled by periodic eugenic thought, after these have taken over the very meaning of development of new sciences and technologies. Under these conditions, bioethics constitutes a new rampart, a new counter-power. Given its rapport with biomedical science, with civil and medical rights, bioethics is a new oracle, identifying and announcing possible catastrophes (according to the methodology proposed by Hans JONAS), and new in the sense that it seeks to prevent them from occurring. I t is operational too from a political point of view (preparing reflections for lawmakers and other policy-makers in the areas of research, medicine and health, likewise at society level, when they organise pluridisciplinary reflections of the various actors involved, among whom we find physicians, scientists and research workers in life sciences, in society and human science, associations of ill persons, or when concerned by transmission of values to younger generations through education channels... In the foregoing context, and when they are award of this, persons in charge of public affairs expect that bioethics not only exists per se, viz. as a discipline with a methodology and that using this, it develops coherent reasoning to help orient policy decisions in keeping with ethical reflection. As far as policy-makers are concerned bioethics can and should be been seen as the "consultant oracle"
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3. What lessons should we draw from this for research in bioethics? 3.1. The first lesson is that the dialogue between public authorities and bioethics n eeds to be clarified an d organ ised, even if there are advanced forms of legislation in most topics that relate to bioethics. Indeed, however close the link between the legislator and the field of bioethics, the divide between the political and the bioethical points of view is still miles apart. And this point, as I see it, is of paramount importance. To support this, we need only recall the rejection by the European, Parliament, on May 1, 1995, of the joint project approved on January 23, 1995 by the Committee for Conciliation in respect to the directive of the European Parliament and the Council of Europe regarding the legal protection of biotechnological inventions in respect to patenting of DNA chain-sequences. Please, however, do not misconstrue the point I am making: I am not saying that bioethics was instrumental to the rejection, all the less so that we are well aware that in the European Parliament, on that particular date, there was not an in-depth, debate on the subject, Bioethics, I would argue, was in a position to throw light for the politicians on the state of impreparedness of the debate, and on the gap existing between the perceptions of the legislator and those entertained by representatives of civilian walks. Not only was the message not heard, but its proponents were not even consulted.
Clarifying and organising this debate presupposes that bioethics remains external to ideological conflict of interest which runs through classes of national policy and European policy, and has as its objective to vivify the dialogue between civilian society at large and the political authorities. 3.2. The second is to resolutely en gage in high-level methodological research A prior distinction between method and methodology must naturally be borne in mind. A method is a procedure engaged to attain an objective and it may not necessarily be a conscious one. We can only talk about methods in ethics if we admit that each case is an individual one. This does not preclude, however, reflecting on ethical situations as embodying specific characteristics, to such an extent that one ends up recognising principles. From the point that one thinks of procedures implemented to come to a decision, we are taking a reflexive stance, and that is where methodology comes in. Methodology can be defined as a refection, or an analysis, of the methods underpinning any decision appertaining to ethics. This leads us to consider, in ethical methodology, two distinct levels, that of enacted methodology and that of methodological research. Questions of enacted methodology come under the domain of ethics committees and experts appointed by these committees. Questions of
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methodological research belong to specific courses. In this respect we can add a further distinction regarding ethical methodology: its aim is to turn those methods used in taking ethical decisions and that relate to ethical theory into a conscious process. Methodological research can begin with an auto-representation of bioethics as a language and from the fundamental distinction between ethics of meaning and ethics of norm. Methodological research must occupy a systematic position with respect to several levels: the person, the family, society, mankind and must never conclude on any given level without observing that there has been a transition from one level to another and therefore without taking into account the fact that ethical conclusions for one level are not necessarily valid for other 3.3. The third is to engage in teacher training lot (and in) bioethics Bioethics has moved on from being a body of opinion to becoming a body of knowledge, a corpus now singled out for teaching purposes. There should be a priority concern to have bioethics made available in a set of texts which, even with diversity, would serve as references with regard to rules and regulations, to disciplinary and interdisciplinary fields, to national and international situations; this corpus would be addressed to scientists, physicians, educators and teachers who are constantly confronted with ethics-related problems, at work, in studying or teaching and in their relationship with young people and society at large. This could take the form and I plead the case for - of a European level CD-ROM in Bioethics, thereby enabling ail the above parties to be easily served, with complementary training modules for the teaching profession. To take this point one step further, let us not be obsessed by the question of whether bioethics should be a generalist curriculum theme or whether it would be better presented as a bolt-on extension to existing courses: let us rather invent a new mode of transmission which incorporates both the ethics of meaning and the ethics of norm. 3.4. The fourth is to introduce the ethical dimension before and during University in all subjects which imply a bioethical content. This is the most important facet, insofar as it embodies the education of the younger generations. We must bring out the as yet invisible links between subjects as they are taught today and bioethics, in such a way that the latter becomes a new vector for values. A difficult task of "disenchantment" must be proposed, i.e., we must provide a clear look at reality, in terms of fantasies and myths (the debate around and beyond species, the wish for the perfect child, or ideal children, or new men, or supermen, or societies of excellence..) which tend to idealise men and society, and which position would readily have us believe that "the best of worlds" is at hand. This work is not in itself ideological, nor is it nihilistic or even humanist in essence; it is simply positive and
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constructive, and based entirely on the relationship between master and student and on transmission of both subjective and objective knowledge content as attained and the modifications of one's self as they occur during the acquisition of the knowledge. To conclude, might a just say this: those in charge of public affairs who come into contact with bioethics are facing difficulties, the deeper meanings of which transcend strictly political levels Fortunately, such meanings are not imbedded in an absolute ethical corpus, nor in any official ethical doctrine which we would just as quickly hasten to forget if the many examples that have held sway in the XXth Century in many countries were to spring to mind. If the responsibility of those who believe in bioethics does lie in the undoubtedly painstaking pursuit of their work, aimed at enabling and enhancing the decisions of the politicians, it is, by the same token, also the responsibility of the latter to encourage and to enhance the systematic introduction of the ethical dimension in all society's activities.
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Methods
Psychology Bioethics Research and Psychoanalysi s Emilio Mordini, Psychoanalytic Institute for Social Research, Rome
Introduction Psychoanalysis is an ambiguous word, which nowadays includes many different theoretical and clinical approaches to human mind and mental disturbances. The same existence of psychoanalysis as a distinct branch of science has been debated and it has been argued that psychoanalysis should simply become integrated in modern psychology. Since it would not be possible to discuss the main theories derived from Freud's thoughts, we will use the word "psychoanalysis" only in two welldefined senses: 1st Definition: Psychoan alysis is the name given to a discipline developed by S.Freud, which includes: 1) a method of investigating the mind; 2) a body of knowledge about human behaviours; 3) a modality of therapy for mental illness (Freud S. 1922, Valenstein A.F. 1979). 2nd Definition: Psychoan alysis is a way of thinking (both theoretical and clinical) based on the assumptions of the existence of unconscious mental processes underlying conscious mental activities (Gindro S. 1984, Gabbard G. 1992). The relationship between bioethics and psychoanalysis can be considered both from a theoretical perspective and from a historical point of view. We are not going to deal with the latter. From a theoretical perspective one should consider four main points: i) Ethics and Psychoanalysis; ii) Ethics of Psychoanalysis; iii) Ethical I ssues in Psychodynamic Psychotherapies; iv) Possible Use of Psychoanalytic Concepts in Bioethics.
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Ethics and Psychoanalysis First of all, one should consider the relationship between ethics and psychoanalysis as two distinct disciplines. Ethics is a philosophical discipline which deals with values, norms, and their theoretical foundation, consequently ethics is not expected to be interested in the psychological basis of human behaviours (even if it is to note that Aristotelian ethics, as well as other Ancient Greek ethics, are partly based on psychological considerations being practical arts rather than theoretical disciplines). The point is that the way in which concrete individuals build their internal moral world and rule themselves is totally irrelevant to evaluate moral arguments. In the final analysis, those who deny this point turn ethics into a branch of psychology, since individual preferences become the only possible foundation of the moral reasoning. The result is the exclusion of ethics from philosophy. Psychoanalysis deals with values, norms, and their foundation too, but from an individual perspective. In other words, the psychoanalytical speech does not concern principles but individuals who are supposed to be ruled, at least in part, by internal unconscious drives, which have nothing to do with philosophical statements. Ethical systems as well as individual's moral are the result of complex mental processes. It is no matter whether these systems as well as personal beliefs are right or not, it is up to philosophers discuss this point. They are anyway the result of complex mental (individual or collective) processes which in the final analysis are based on unconscious desires, fantasies, fears. At least in Freud's thought, philosophic systems are at the same level of - to say - delusive systems. They might be true but it does not avoid them continuing to be delusions, as anyone who has met a paranoiac patient well knows. Ethics of Psychoanalysis Psychoanalysis, as any other discipline, cannot be value-free. Actually psychoanalysis has its own set of values and, consequently, has its own ethics. Ethics of psychoanalysis is its metapsychology (Gindro S. 1993), as Freud called the highest level of abstraction in the continuum from clinical observation to theory. Metapsychology is in the meantime the main therapeutic tool and the only theoretical justification of the treatment. In this case one should distinguish between the Freudian ethics and - to say - the common psychoanalytic ethics, as far as the Freudian metapsychology does not correspond with the common psychoanalytic metapsychology. The Freudian ethics is a Kantian one; i.e., purely deontologie. In the Freud's thought the moral law coincides with the truth and ethics is objective and self-founded. Indeed it has been stated that the Freud's motto: Wo es war, soll ich werden strictly corresponds to the Kantian formulation of the moral law (Lacan J. 1966). At any rate, it should be
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emphasised that the absolute deontologism of the original Freudian approach is rather untenable in clinics (Nacht S. 1960, Gindro S. 1994), and there is a broad consensus that - at least with particular patients (e.g., personality disorders, psychosis) - one must deviate from the standard treatment. This deviation is not at all just a technical variant but it is in fact a change of ethical perspective too. The common psychoanalytic ethics is based on two main values: i) the respect for the self-determination; 2) the respect for the truth. Indeed each psychoanalysis - no matter as far from the original Freudian theory it is - is eventually based on these two rules: i) to avoid the imposition of therapist's values upon the patient, and to take as far as possible the patient's capacities rather than one's own desires as a guide; ii) to cure through the discovery of any kind of truth. However it is worth noting that an evaluation of these two points is not at all clear. First, the respect for self-determination does not imply the acceptation of the philosophical concept of autonomy, which is based, in the final analysis, on an idea of a free will which is not consistent with psychoanalytic models; secondly, the real nature (e.g., biographical v/s narrative) of the psychoanalytic truth is rather controversial. Ethical Issues in Psychodynamic Psychotherapies During the last two decades quite a number of articles has been published on ethics of psychotherapies analytically oriented. Just to list the main issues debated, one can mention: i) Informed consent to psychotherapy; ii) Patient's exploitation (sexual, emotional, economic); iii) Length of treatment; iv) Termination of treatment; v) Psychotherapies in less competent patients (e.g., children, neuropsychiatrie patients); vi) Supportive psychotherapy; vii) Truth-telling in psychotherapy; viii) Ethics of behaviour control; ix) Cost of treatment and allocation of resources. The subject has been extensively explored and it is sufficient to refer the reader to the scientific literature (see for instance Karasu B. 1991). Possible Use of Psychoanalytic Concepts in Bioethics This last point is likely to be the less debated of the four. There have been very few attempts to use concepts coming from psychoanalysis in the bioethics field (Gindro S. 1993, Mordini E. 1994, Huber G. 1994). Psychoanalytic concepts may concern bioethics at least after two different aspects: i) the definition of moral agent; ii) the methodology. 1) The Moral Agent Bioethics is not applied ethics, namely is not a mere branch of moral philosophy. Bioethics is a practical discipline, which only partly derives from applied ethics. Medical anthropology, medical sociology, the movement for the patients'rights, philosophy and history of medicine - just
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to mention a few - are other important roots of the bioethics thought. Bioethics now involves professionals coming from different fields (not only "ethicists") and claims to be able to find out and recommend solutions, to create a consensus and govern the public opinion, eventually to play a role in political decision-making. It implies that bioethics must deal with concrete individuals and cannot afford the philosophical luxury to consider only abstract moral agents. Thus the psychological dimension, that may not be taken into account by pure philosophical ethics, becomes decisive for bioethics. The consequence of the previous statement is that in bioethics we should become to consider the notion of unconscious mental life. Actually to take into account the existence of the Unconscious is compulsory for any modern discipline, as it has been stated not by a psychoanalyst but by a philosopher (Searle J.R. 1992). Bioethics took from moral philosophy its standard model, according to which the moral agent is presumed not to have a real mental life. The bioethicists' ideal patient is a person free to act, fully rational and self-conscious. It is questionable if this model - which actually comes from the Kantian philosophy and the Philosophy of Law may work well enough in acute medical conditions but it is definitely clear that it is not applicable in more complex fields, such as any kind of longterm therapies, as well as psychiatry and neurology (Agich G. 1994, Fulford KWM 1992). Another important consequence of the acceptation of the psychological dimension in bioethics is the right consideration that should be given to emotional factors in personal decisions. Emotions always play a crucial role in decision-making processes. From a psychological point of view the same distinction between rationality and emotions is completely untenable and represents one of the chief misunderstanding of our culture, as it has been recently emphasised even by a neuroscientist (Damasio A. 1994). This point is extremely important in relation with some bioethical issues such as the definition and evaluation of competence, the way to inform patients and to judge about their consent, the evaluation of living wills and advanced directives, and the ethical justification of compulsory treatment in case of "irrational" refusals. 2) The Methodology From a methodological perspective psychoanalysis may teach to bioethics the art of doubting. Doubting is not a mere mental attitude but it is an art that requires a method. The first doubt concerns the scientific status of the investigated object. Psychoanalysis, as well as modern physics, has been the first science to take into account the fact that any investigation modifies its objects, as it has also recently emphasised by Gindro (Gindro S. 1994).
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Another important point is that of time v/s timing. In bioethics we are used to consider the simple notion ottime, while the real notion to be taken into account in humans should be that of timing, as psychoanalysis teaches us. The ancient Greeks used a marvellous word to mean that: χαιρος. The χαιρος is the opportune moment, namely the right moment to do something. The same thing in particular moments is not the same thing in different moments. If you are a musician, a chess player, or a general you can perfectly catch this point. Indeed the Napoleon's coup d'oeil is a wonderful example of timing. Most bioethical dilemmas derive from the use of the notion ottime rather than of timing. At last we should consider empirical methods in bioethics research (e.g., questionnaires, interviews, surveys). They do need a psychoanalytic understanding to avoid deceiving researchers into believing in false results. In particular it should be emphasised that bioethics themes may have a great unconscious impact on people, since they touch the sources of life (e.g., personal identity, sexual drives, fear of death, feeling of absurdity). That should be taken into account both in collecting data and in processing them. In particular before passing to the next level (i.e., the implementation of guidelines, codes, and recommendations), we need a critic evaluation of the unconscious mental reactions in the social group investigated. The concept of social unconscious, as developed by Gindro (Gindro S. 1978, 1994), and that of unconscious social drives, as described by Stoller (Stoller R. 1991), are both crucial in this sense. References Ferenczi S, Rank O (1925): The development of psychoanalysis. Nervous and Mental Disease Publishing Co., New York Gabbard GO, Nadelson C (1995): Profesional boudaries in the physician-patient relationship. JAMA, 273:1445-1449 Gindro S. (1993): La morale della psicoanalisi. Global Bioethics, 6:279-282 Helm es J, Lindley R (1994): Ethics and Psychotherapy. Gillon R. (ed): Principles of Health Care Ethics. John Wiley & Sons, Chichester Holt R (1980): Freud' s impact on modern morality. Hastings Center Report, April 1980, 38-45 Karasu TB (1991): Ethical aspects of psychotherapy, in Bloch S, Chodoff Ρ (eds): Psychiatric Ethics. 2nd ed, Oxford University Press, Oxford Kernberg O (1992): The Current Status of Psychoanalysis. Psychoanal Q, 61:4562 Michels R (1976): Professional ethics and social values. Inter Rev Psychoanal, 3:377-384 Rieff Ρ (1979): Freud: the mind of the moralist. University of Chicago Press, London Szasz Τ (1978): The myth of psychotherapy. Anchor/Doubleday, New York Truax C, Carhuff R (1967): Towards effective counselling and psychotherapy.
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Sociology Survey Methods in Bioethics Søren Hølm, University of Copenhagen, Copenhagen
Introduction There has in recent years been a growing interest in empirical studies in relation to bioethical problems. These studies have been of many different kinds, and have used a variety of data collection methods. The present paper will restrict itself to an analysis of the use of surveys as a tool in bioethics where a survey is understood as a structured collection of data by means of pre-determined questions put to a sample of a given population. This excludes methods like case histories, direct observation, unstructured interviews, and analysis of written material such as official documents or guidelines, from the scope of the paper. The paper will also have a restricted scope in another sense, since I will leave out discussion of the kind of studies that could be called "ethics related studies", i.e. studies which are performed because the results are relevant for the ethical analysis of a given problem, but where ethical problems or ethical questions are not a central part of the study. This could for instance be a study of the number of terminal patients with untreated or insufficiently treated pain. Such a study would be highly relevant for the euthanasia debate, but would fall outside of the scope of the present paper because its central question is not one about ethics. The distinction between "ethics related studies" and studies that are more central within the area of empirical ethics is obviously fuzzy, and is further complicated by the fact that a single study may have either purpose when viewed from different theoretical perspectives. If we again take the study mentioned before aiming at uncovering the prevalence of untreated pain in terminal patients, a deontologist might see it as "ethics related", whereas a consequentialist might see it as a typical piece of empirical ethics. The paper falls in three main parts. The first part gives an overview of the field by answering three questions 1) what kind of questions can be asked, 2) who could be relevant
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informants, and 3) what purpose can a survey fulfil?. The second part describes some technical and analytical problems inherent in survey methodologies, and the third part discusses the proper role of surveys in bioethical methodology. What, who, why Surveys in bioethics can aim at uncovering, at least, 9 different kinds of information: a. The informants' knowledge; b. The informants' opinions; c. The informants' attitudes; d. The informants' prior actions; e. The informants' willingness to act in certain ways; f. The informants' justifications for actions; g. The informants' perception of ethical problems; h. The informants' prediction of the effects of certain changes; i. The effects of certain interventions (in a pre-post design) These different kinds of information can be obtained from 3 different kinds of informants: a. The population; b. Patients or families of patients; c. Health care professionals If we factor in both the different kinds of information, and the different kinds of informants we have 27 different possible survey-types. Which of these types to choose obviously depends on the purpose of the survey. If we are interested in whether patients want euthanasia the obvious design would be to ask the patients this question directly, but if we are interested in how to make an effective contribution to the debate in medical circles we might instead ask doctors under what circumstances they are willing to perform euthanasia, and how they justify the restrictions they make. The differences between these two examples is mainly a difference in purpose, and not a difference in methodology. I will suggest that there are 4 distinguishable purposes which a survey could serve in bioethical research: a. Mere description; b. Quantification of acts independently identified as ethically problematic or exemplary; c. Assessment of the effect of changes in legislation or education; d. Use in normative discussions The last of these purposes "use in normative discussions" is obviously the most contentious and will be discussed in the last section of the paper. Problems in survey methodology One of the main classes of problems in the use of surveys in bioethics is, that everybody thinks that they are able to construct and
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analyse a questionnaire without any training at all. This is a serious mistake. Social researchers use years to learn their trade, and there is no reason to believe that bioethicists can learn it any faster. The first prerequisite for using survey data in bioethical discussions is that these data have been generated in a technically correct manner, and that they are valid (in the technical sense). If technical validity is not ensured the results may be misleading or just plain wrong (for a review of survey methodology see Fowler 1993). The questionnaire itself has to be of a high technical standard with unambiguous and unbiased questions, and if scales are later formed for analytical purposes they have to be validated (decisive arguments for this assertion can be found in the literature on scale-validation, e.g. Camilli et al. 1994). Writing good survey questions is a very difficult art, and persons with long academic training may not be very suitable for the task. As far as possible the developed questionnaire or at least some of the single questions should also be comparable with other previously used questionnaires so that direct comparisons become a possibility. Vignettes can often be a useful tool for framing a set of questions in an appropriate manner, but just as it can be difficult not to write leading and biased questions, it can also be difficult not to write leading and biased vignettes. For instance, if the vignette is about a patient with pain expressing a wish for euthanasia, it becomes very important to choose the least leading descriptions of the pain. All pain descriptions are evaluative (pain itself usually being seen as something negative), but there are degrees of evaluativeness even within this spectrum, e.g. the adjectives severe, intense, excruciating, agonising, fierce, and overwhelming do not have the same evaluative connotations even though they are all found as synonyms to "excruciating" in WordPerfect's synonym dictionary. Which of these adjectives one uses in the vignette may therefore be important. It is also a basic requirement for a good survey that the respondents are chosen in an appropriate manner (not a convenience sample), and that the sample size is sufficient. If these requirements are not fulfilled statistical analysis of the data will become inappropriate and misleading. A second problem is caused by the fact that surveys in bioethics often touch upon sensitive topics. This may lead to the survey giving invalid answers. The practices the researcher wants to ask about may be illegal, they may touch areas where the professionals themselves realise that they provide insufficient care or treatment, or they may require patients to contemplate issues they have hitherto suppressed in their own mind. This connection with sensitive topics creates problems both in the execution of the study where anonymity and confidentiality issues may prevent a technically optimal survey, and in the analysis phase where it becomes necessary to take account of the possible biases in the answers given, caused by phenomena such as conformist respondents. In some
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cases it may also be the case that respondents have the information they are asked about, but they may be unwilling to pass it on to the researcher. Surveys about sensitive topics may in themselves raise research ethical problems, and it should be unnecessary to point out, that a survey about ethical issues ought to be conducted with the utmost attention to research ethics. This is, however, one area where it may not be wise to listen to social scientists since their tradition allow for research practices which most on reflection would find unethical (Lee 1993, Kimmel 1988, Mitchell 1993, Beauchamp et al. 1982). In the analysis phase problems may also occur for a more subtle reason. Among philosophers consistency and coherence are seen as some of the most important features of a good argument, or a good justification for a position; but, as it has been well documented in the literature on informal reasoning, non-philosophers do not hold consistency, coherence, and non-circularity in similar regard when they present arguments (Fisher 1988, Fogelin et al. 1991, Walton 1989 & 1992). An interesting American study indicates that subject experts are no better than lay persons in arguing according to the standards of philosophical logic, only trained philosophers differ in the logical rigour of their arguments when subject experts, lay persons, and philosophers are compared (Kuhn 1991). An attempt to introduce coherence in the analysis of arguments put forward by survey respondents may therefore create highly misleading results, because it amounts to an attempt to regularise a phenomenon which may in the end be truly chaotic. The standard inference that if you hold A and A entails Î’ then you must also hold Î’ is for instance problematic in most informal reasoning; and it is definitely an invalid empirical assertion to claim that a group of people who hold A also holds (or must hold) B, if you have only asked them about A and not about B. > After having read this long list of various problems some bioethicists are probably ready to abandon survey methodologies. This would, however, be a too hasty conclusion to draw. No empirical research methods are problem free, and the methodological problems in conducting surveys can be overcome.
The role of surveys in bioethics As Weaver and Trovino have pointed out there are at least three possible ways of conceiving the relationship between empirical studies and normative ethics (Weaver et al. 1994). It may be: 1. Parallel; 2. Symbiotic; 3. I ntegrative If the relationship is seen as parallel empirical ethics and normative ethics each has a distinct set of theories, and what they share is only the field of study (the kinds of behaviour which incorporates ethical components). This is the view held by many social scientists in the
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classical tradition, who also traditionally hold a relativist metaethics. In a symbiotic relationship there is more collaboration between normative and empirical ethics. Each of the two approaches retains a distinct theoretical core, but there is exchange of data and ideas, and the theoretical core of each may be modified in the light of developments in the other. As an example one could imagine that the sociological category of "power" could become an important ethical category in the ethical analysis of the doctor-patient relationship. An integrative relationship marks the most radical departure from the traditional distinction between empirical and normative ethics. In an integrative relationship there is a common theoretical core with elements from both approaches, and, furthermore, a core which can be modified extensively from both sides. A truly integrative relationship will therefore entail a significant weakening of the is-ought distinction and may for this reason alone be unacceptable to many bioethicists belonging to the analytic tradition. In the end I think that a symbiotic relationship is necessary for the full exploitation of survey data in bioethics, and that such a relationship is most easily brought about by direct collaboration with social scientists. In more concrete terms this would involve a two-way exchange of ideas. Social scientists may benefit from exposure to modern versions of consequentialism, deontological ethics, virtue ethics, and casuistry; and may through this find a. that empirical ethics is a fertile field of research, b. that strong ethical relativism is not as plausible as it initially seems, and c. that the validity and importance of social research into areas of health care practice where ethical problems occur is strengthened if the research is sensitive to ethical issues. Bioethicists may, on the other hand, find that actual up-to-date knowledge about the health care setting and the ways in which health care professionals think about ethics may not only make their analysis more applicable in health care practice, but may also inform their theoretical deliberations. What I suggest is not that the results of a survey may simply decide whether or not a certain ethical theory or point of view is correct (even if 100% of a population believed something to be right it would not make it right), but that the result may be of use in "the context of discovery" (to borrow a term from the philosophy of science). Marcus Tullius Cicero may have been right to remark that "there is no point of view so foolish that it has not been held by some philosopher, but this does not necessarily entail that there could not be very reasonable points of view which no philosopher has discovered yet, or that there could not be ethical problems which are very important to the practitioners in a certain field, but which no ethicist has picked up and analysed. If we a accept a model of reasoning which leaves room for the unconscious, for leaps of imagination, or for the value of playing with concepts and thoughts, besides the traditional rational and logical reasoning, then such a model could also account for more intangible interactions between survey studies and normative ethics.
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The process of participating in developing a survey may also in itself force the bioethicists to refine their theoretical ideas and distinctions. Fuzzy distinctions are difficult to operationalise in terms of survey questions, and social scientists have no compunction about pointing this out to the hapless bioethicist. A final coincidental advantage of establishing close collaboration with social scientists is that research groups composed of a broad range of people from different academic traditions also tend to contain more diversity in terms of underlying value assumptions. References Beauchamp T.L., Faden R.R., Wallace R.J., Walters L. (eds.) (1982): Ethical Issues in Social Science Research. The Johns Hopkins University Press, Baltimore. Camilli G., Shepard L.A. (1994): Methods for Identifying Biased Test Items. Sage Publications, Thousand Oaks, California. Fogelin R.J., Sinnott-Armstrong W. (1991) Understanding Arguments - An Introduction to Informal Logic (4. ed.). Harcourt Brace Jovanovich Publishers, New York. Fisher A. (1988): The logic of real arguments. Cambridge University Press, Cambridge. Fowler F.J. (1993): Survey research methods (2. ed.). Sage Publications, Newbury Park, California. Kimmel A.J. (1988): Ethics and Values in Applied Social Research. Sage Publications, Newbury Park, California. Kuhn D. (1991) The Skills of Argument. Cambridge University Press, Cambridge. Lee R.M. (1993): Doing research on sensitive topics. Sage Publications, London. Mitchell R.G. (1993): Secrecy and Fieldwork. Sage Publications, Newbury Park, California. Walton D.N. (1989): Informal Logic - A Handbook for Critical Argumentation. Cambridge University Press, Cambridge. Walton D.N. (1992): Plausible Argument in Everyday Conversation. State University of New York Press, Albany. Weaver G.R., Trovino L.K. (1994): Normative and Empirical Business Ethics: Separation, Marriage of Convenience, or Marriage of Necessity. Business Ethics Quarterly, 4: 129-43.
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Roles of Empirical Research in Bioethics Johannes JM van Delden, Utrecht University, Utrecht
Introduction You cannot do ethics until you know the facts. Therefore the role of empirical research in ethics is a very clear one. Its task is to describe the morally relevant facts. In order to develop a ethically sound protocol about Do Not Resuscitate decisions, for instance, one has to know what the chances of cardiopulmonary resuscitation are and in what condition the survivors will spend the rest of their life. Likewise, one will want to know what the chances of getting a certain disease are, and what therapeutic possibilities medicine has, before answering the question whether it is morally acceptable to perform a certain predictive genetic test. I take it that this contribution to (bio)ethics is undisputed, so I will not go into it any further. Apart from this established task, I see another fruitful way in which empirical research can contribute to bioethics. This type of research should concentrate on the norms internal to practices. Because technical and normative aspects of actions are closely Interwoven, a description of a practice ("what physicians do") at the same time forms a description of those internal norms. These constitute a form of practical wisdom that needs to play a role in moral thinking. Active or passive? The question can be raised whether data about medical practice are only the object statements are formulated about, or can these data themselves have an input in the process of formulating arguments. In a deductive theory, moral judgements can be derived from principles. In this kind of theory usually only the former (passive) role is reserved for factual data. Actually, this is the predominant method of reasoning in articles in medical journals concerning ethical issues. Mostly, the authors describe a certain state of affairs and conclude that this is desirable or not, given principle X.
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Period. Often one of the four principles of Beauchamp and Childress (or Gillon) functions as X. In a reflective equilibrium model of ethical argument, however, this kind of empirical data about how norms function in practice can have an active input in normative reasoning. They do so by playing the role of considered moral judgements. The attraction of this lies in the fact that one thus creates a chance staying close to reality and this in turn may raise the chance of the argument being effective. This is so, because in order to appeal to people, moral judgements have to have a certain connection with those peoples thoughts and experiences. Reflective equilibrium There are certain features of the reflective equilibrium model that need to be mentioned. First it is characteristic for this model to aim at coherence between elements of different reflective levels, without according a special position to any of those elements. Its justification is a matter of mutual support of many considerations, of everything fitting into one coherent view, as Rawls put it (Rawls 1972). Another distinguishing mark of the reflective equilibrium approach is its non-linear pattern of reasoning: it is at the same time top-down as well as bottom-up. One's considered judgements may point to specific facts as being morally relevant. These facts will lead to the selection of possibility relevant principles. Moral principles may help in further elucidating the case. To cite Martha Nussbaum: principles help us to pick out the salient features of the particular (Nussbaum 1986). New facts may be discovered as being morally relevant. Certain strong considered convictions may lead us to rethink the meaning of a principle in the case under consideration. Other convictions may be disregarded, when one has reached a more general and principled view-point. This process of mutual adjustment and mutual justification continues until a situation of reflective equilibrium is reached, i.e. a situation in which one has reached a coherence set of mutually supporting considerations which together provide a good reason for a particular solution. This is not the place to give an in-depth analysis of the stronger and weaker points of the reflective equilibrium model. One major problem I will briefly deal with, however, because I think the answer to that problem underlines the role of empirical research in ethics. The problem I refer to is
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the relativistic character of any coherence theory. As will be clear, bare coherence is an insufficient basis for justification, because the elements of the cohering equilibrium themselves could be morally unsatisfactory. There are at least two ways of overcoming this problem. First, one could point to the fact that a coherence theory does not claim to reveal the moral truth but only aims at providing a justification (good reasons) for a certain line of action: It is a constructivist type of theory, in which there is room for words on subjects other than last words (Nozick 1968). Secondly, several authors have pointed out that there are degrees of justification depending on the degree of coherence. And one chance of reaching a higher degree of coherence arises when the considered moral judgements the argument starts with, are shared by many. Examples of this idea are case histories on which consensus exists (Nielsen 1982) and settled moral convictions (Beauchamp and Childress 1994). I f, therefore, one could show by means of empirical research that for instance most physicians judge a certain state of affairs in the same way, this could serve as a provisional fixed point (Daniels 1979)1. Different types of reflective equilibrium models To speak about the reflective equilibrium model is somewhat misleading. There are several versions with different aims. Rawls' wide reflective equilibrium, for instance, which he developed in "A theory of justice" is designed for the formation and justification of ethical theories. At the Utrecht University several ethicists, especially Robert Heeger and the van Willigenburg, have developed their own version of a reflective equilibrium which they call a "network model". This model is meant to generate good reasons for acting in a certain way in specific cases (Van Willigenburg 1989 & 1991). I n this network model, coherence is sought between the considered moral judgements of individuals, moral principles and the morally relevant facts of the case. Because of this orientation on at real life, the network model seems to provide a good line of reasoning in bio-ethics. My suggestion is to use this model not only in specific cases, but also for developing "modest theories", in which case one would have to add background theories to the ingredients of the equilibrium process. What is meant with modest theories? Modest theories do not aims to provide an all-compassing body of reflected beliefs about general issues In order to counter the critique that this kind of reasoning will only justify conservatism, I stress the fact that these fixed points are provisional and form only one of the elements of the reflective equilibrium.
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like justice or autonomy. Modest theories have a limited range. They cover some theoretical insights, may involve reflective information on fairly concrete problems, but may also cover some meta-level reflection on the tenability of a specific type of ethical argument. Being limited in depth means that modest theories do not provide answers to all questions. The consequence is that modest theories are necessarily incomplete. Ethically relevant empirical research: a program Apart from certain prescriptions, the network model thus also generates a program for empirical research in bioethics. It follows from the above that the object of such research can either be the morally relevant facts (as in any model of reasoning) or the considered moral judgements of those working in the field. In the first case one describes more factual circumstances. In the second case one tries to set down the phenomena, as Aristotle would call them. This is not to look for belief-free fact, but to record the usage and the structure of thought and belief which usage displays. In general one could discern at least two subtypes in this second kind of research: those designs which are directed at determining attitude (what people say or think they do) and those aimed at describing actual conduct. For the first kind of studies one could use a survey design, for the second an experimental design, for instance using vignettes, is necessary. The fact that attitude and conduct do not always correspond will not surprise you1. To illustrate this I will give two examples. To formulate a guideline on Do Not Resuscitate decisions one would need facts about the chance of success of resuscitation to name a few. Apart from that one could collect data about the reasons physicians give for their DNR-decislons (attitude). Also, one could, for instance by using structured vignettes, determine what actual happens in certain cases. As stated, it would be of importance to look for cases in which many physicians acted in the same way. Of course, these data should be confronted with principles and background theories before rendering a guideline. Another example is the place of respect for autonomy in nursing homes. The Dutch association for nursing home care regards this principle as the starting point for providing nursing home care. At the same time the 1
Although coherence between attitude and conduct is often seen as a condition for integrity, I believe that even those whom we would say to have integrity do not always do what they think they do.
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facts are that many ofthose living in nursing homes are no longer capable of exercising full autonomy therefore, has to be supplemented by other normative elements. In order to design a more adequate normative theory for nursing home care one could investigate the considered moral judgements of nurses in nursing homes. By providing several alternative lines of action in a certain case and asking the nurses to choose between them, one could determine the normative reality in nursing homes. And this could serve as a beginning for formulating such theory. Conclusion I hope to have shown that empirical ethics can contribute in an interesting way to normative thinking. Not only by describing morally relevant facts but also by making explicit the internal normativity of practices. This is important because, so I believe, those norms should play an active role in theory construction. This will add to the moral richness of the theory and thus to the strength of its justification.
References Beauchamp TL, Childress JF. Principles of biomedical ethics. 4th edition. New York: Oxford University Press, 1994. Daniels N. Wide reflective equilibrium and theory acceptance in ethics. J Phil 1979; 76: 256-82. Nielsen K. Considered judgments again. Human studies 1982; 5:109-118. Nozick R. Moral complications and moral structures. Natural Law Forum 1968; 13: 1-50. Nussbaum MO The fragility of goodness. New York: Cambridge University Press 1986. Rawls J. A theory ofjustice. Oxford: Oxford University Press, I972 . Willigenburg Τ van, Heeger FR. Justification of moral judgements: a
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network model. In: Otte M. Societas Ethica. Jahresbericht 1989. Hannover: Societas Ethica, I989. Willigenburg Τ van. Inside the ethical expert. Kampen: Kok, 1991 .
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Complementarity: multi di sci pli nary research i n bioethics Ruth Chadwick and Mairi Levitt, Un iversity of Central Lancashire, Preston
Introduction Bioethics is defined by the I nternational Association of Bioethics as "the study of the ethical, social, legal, philosophical and other related issues arising in health care and in the biological sciences". I t is thus a multidisciplinary field of study. Questions arise as to how the different disciplines involved relate to one another. I t is the purpose of this article to explore the relationship between Philosophy and Sociology with special reference to a case study concerning work on perceptions of and ethical issues in biotechnology.
Philosophy The role of philosophy in Bioethics has, we would suggest, the following aspects: i) con ceptual an alysis; ii) developmen t of n ormative frameworks; iii) critique of argument These are, of course, related. Concepts in bioethics that are prominent in argument include: health and disease; natural and unnatural; life and death. Under some interpretations the classification of a condition as a disease has normative implications, regarding whether or not health care resources should be allocated to it. But the form of the argument "x is a disease, therefore it should be treated" is a good example of an argument that is open to criticism for confusing the question of classification of χ with the question of what we ought to do about x. A normative framework might have different uses. I t might be regarded as providing a way for thinking about problems, by pointing to considerations that have to be taken into account - a framework within which issues may be addressed. One of its functions here might be to draw attention to the moral dimensions of a situation. More ambitiously, it might be desired as a means of providing answers for individuals, or as a basis for public policy making. In this case, it might be thought that answers can be deduced from an application of a theory e.g., of a consequentialist or deontological sort. There are, however, well-rehearsed problems both
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internal to the theories themselves and in their application. As an alternative to such deductivism, it is perhaps fair to say that the most well-known normative framework in bioethics is principlism, as expounded by Beauchamp & Childress (Beauchamp & Childress, 1979,1983, 1989, 1994). The four principles (autonomy, beneficence, nonmaleficence and justice) have gained enormous popularity in bioethics, although they remain controversial. Principlism has been criticised for not being sufficiently theoretically grounded (Green 1990); for ignoring human emotions (Alderson 1991); for being indeterminate; and for being the product of a particular cultural setting (Hølm 1995). As regards being indeterminate, this does not worry those supporters of principlism who regard it as a way of thinking about issues without necessarily providing definitive answers. Some of the criticisms, however, are more worrying. Why should we adopt one normative framework rather than another? In the absence of either a moral truth that is discoverable or an adequate theoretical grounding, one test might be that a given framework does the job that it is designed to do. The charge that a framework is culturally specific will be a serious one if what is required is the basis for ethical consensus between different societies. It might therefore be important to test its acceptability. This will be the case even if it is not meant to provide definitive answers but simply to enable us to identify the moral aspects of a situation. Some of these aspects, arguably, might not be recognisable in some contexts; conversely dimensions that are not included in the framework might be. This points the way to the need for some empirical data. The relationship between normative ethical theory and empirical evidence is complex. In the case of some theories, such as preference utilitarianism, it is clear that there is a place for finding out what people actually want in order to put the theory into practice (although there may be a problem about whether these actual preferences are informed, and if not, how important that is). Others give importance to "reflective equilibrium" between theory and people's intuitions (Rawls 1972): each has to be adjusted in the light of the other. A third type of relationship is the testing of the acceptability of a theory or normative framework in a particular society. Erik Nord's work on the acceptability, or otherwise, of the QALY in Norway, is a case in point (Nord 1992, 1993). Looking at the relationship from the opposite direction, there are questions about the extent to which normative frameworks influence the empirical evidence, in terms of what questions are asked and how the results are interpreted. If we start out to test the degree of acceptance of a set of principles, for example, we might overlook the possibility of interpreting the data in terms of acceptance of a set of virtues. It might be argued that this is not in itself a problem, if principlism is held to be compatible with virtue ethics, but to reduce the differences between frameworks to the extent that either they collapse into one another or that no one could possibly disagree, whatever their position, has its own
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dangers. The role of sociology in Bioethics can also be said to involve conceptual analysis and a critique of arguments. Any contribution to the development of normative frameworks would be in testing the relevance and acceptability of their content across different social and cultural groups. For sociologists, the idea of principles of biomedical ethics, which "cut across national, cultural, religious, political and philosophical divisions", is problematic (Gillon 1995:323). Gillon admits that the application of the four principles "seems likely to require culture-specific interpretations, specification and above all harmonisation when the principles conflict" (Gillon 1995:324). However, if the application of a principle, such as justice, leads to different answers to specific dilemmas then of what use is the general principle and how can it tell us which particular answer, if any, is the one which is just? Søren Hølm considers the principles of beneficence and justice, as discussed by Beauchamp and Childress, to be based on American common morality and concludes that; "we are presented with a structure for moral reasoning which cannot give any definite answers to moral problems or perhaps more accurately can produce any answer we want" (Hølm 1995:337). Sociologists with a relativistic stance would regard moral stances, including religions, to be inevitably bound up with the social conditions in which they are expressed. "It is not the consciousness of men that determines their existence but their social existence that determines their consciousness" (Marx 1859 in Sayer 1989:191). This model of the individual/society relationship is not taken on trust but invites a scepticism towards the idea of universal values, unless expressed in such general terms that all can accept them and then fill in the content. This can be investigated through empirical research. Two examples of such research are Diego Gracia's article on bioethics in southern European countries and Blackhall's study of attitudes towards autonomy among the elderly from different ethnic groups in Los Angeles County (Gracia 1993, Blackhall 1995). Gracia concludes that; "All ethical contents are related, by definition, with empirical conditions, and therefore cannot be absolute" (Gracia 1993:106). Blackhall points out that; "Insisting on the patient autonomy model of medical decision-making when that model runs counter to the deepest values of the patient may ironically be another form of the paternalistic idea that "doctor knows best" "(Blackhall 1995:825). In any investigation in bioethics sociologists will want to examine the "deepest values" of individuals and groups and the way in which these are expressed. For example, genetic counsellors trained in the USA, Canada or the UK tend to present themselves as "non-directive" when asked how they would proceed in hypothetical cases (Wertz and Fletcher 1988). It is usual for genetic counsellors, in certain societies which value individualism and autonomy, to see themselves as non-directive. The next stage would be to see whether genetic counselling is, or could be, non-directive in
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practice which might be researched through the observation or recording of counselling sessions and the understandings of counsellor, client and observer about what went on in the sessions. In Weber's definition of sociology its aim is empathetic understanding of social action (Weber 1968:9). To understand social action we must grasp the meaning of the action to all those involved. The assumption is that all individuals" ideas are worth listening to, those who are less often heard as well as the "experts". Empirical studies in the field of bioethics often investigate the patient's point of view, for example, lay understandings of risk as opposed to medical ones or the impact of genetic screening on individuals and families (Parsons and Atkinson 1992, Snowden and Green 1994). Individuals may not have what experts would consider adequate knowledge - in fact opposition to a particular biotechnological application or medical treatment may be interpreted as evidence of a lack of understanding. Two points could be made about this view, the first is that a high level of knowledge does not necessarily lead to acceptance of the application or the technology, members of green pressure groups with a scientific background are evidence of this, and a lack of understanding, and ignorance can lead to uncritical acceptance as well as rejection. Secondly, the views of experts are constantly changing so it is difficult to say definitely that a lay person who see risks despite expert assurances of safety will not soon turn out to be correct. For example, environmentalists" arguments about the dangers of pollen from genetically engineered crops crossing into other plants were contradicted by experts whose experiments indicated that there would be no significant danger. However, a New Scientist article about new research began "Genes inserted into crop plants are much more likely to escape into the wild than experts had thought". (New Scientist 11.11.95). Empirical research into any biotechnological innovation can gather the views of all those involved including the biotechnology companies and those who are intended to benefit or who will be affected by it. Genetically engineered crops have been presented as a way to feed the hungry of the third world. It would be naive to accept this as the major aim of a commercial company without further investigation. Presented with the view that his company's product, genetically engineered rapeseed, might devastate the economies such as the Philippines and Indonesia, a market analyst with Calgene said "It's our hope, all of us in the industry, to bring products that will benefit people's lives. But at the end of the day, we're answerable to a lot of people. For Calgene it's our shareholders" (New Scientist 17.6.95). The differing ideologies of companies, governments, farmers and consumers are all worthy of investigation. It is of course a commonplace that the fact that people do actually accept something does not show that it should be accepted. There are several examples of practices being found acceptable by majorities within given societies, while considered abhorrent outside. The empirical data, therefore, are not conclusive: attitudes still have to be subject to the
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critique of their supporting arguments, but they do provide evidence to be taken into account in policy making.
The BIOCULT project The Biocult project had three objectives: 1) To use philosophical methods to analyse the concepts of risk and safety. 2) To investigate the formation of perceptions of safety and risk through empirical research with young people age 11 to 18 in Germany, Finland, Spain and the UK. 3) To combine philosophical and empirical insights and identify procedures for a more detailed comparison of the development of cultural and social objections to biotechnology. The construction of the research instrument was informed by philosophical arguments of risk and safety. The material gathered was on specific applications and on general attitudes and beliefs about nature, what is natural, about science and technology. Young people's knowledge about biotechnology at any one time would obviously depend on age, subject specialism, school curriculum and whether a specific application was suddenly newsworthy. However, rather than testing knowledge it was intended to find out about the theoretical frameworks used by young people when they construct arguments for and against biotechnology and how these relate to social factors such as age, sex, religion and country. If nature and the earth are seen as fragile and in need of protection how does this correlate with the perception of risk and danger in science and technology in general and in specific applications? If nature and the earth are there for human beings to use does this correlate with a more optimistic view of biotechnology? Heta Häyry considers the value of examining everyday moral thinking; "[which] may lack conceptual coherence and intellectual vigour, [but] it is, nonetheless, possible to trace people's judgements back to certain types of moral argumentation...the basic principles on which people could reasonably found their thinking can normally be detected by philosophical examination. The resulting generalisations and purified classifications of people's moral views cannot, of course, be employed in strictly scientific analyses, but they do highlight the main differences between ideals held by different people in different cultural traditions" (Häyry, 1996).
Consequentialist The data showed the use of consequentialist arguments to be widespread. As would be expected, no particular version of consequentialism was typical of the responses, but the arguments showed some of the problems with consequentialism as a normative framework, such as the unforeseeability of consequences. Most children, from 96% in
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Germany to 62% in Britain, rejected the view that "human beings can use science and technology to do what they want" and their most popular justification was that to do so would lead to unforeseen consequences. There is an implication here, however, that it is not unforseeability itself that is the issue, but the possibility of those consequences being undesirable. For among the minority who agreed that "human beings can use science and technology to do what they want" a popular justification was that there would be desirable consequences for people and/or the environment1. Two problems commonly rehearsed in the theoretical literature are the extent to which values are commensurable when doing a consequentialist calculation, and the scope of the interests that have to be taken into account. As regards the first, when considering specific applications children intuitively balanced the consequences before coming to their conclusion; "on the one hand it's good because..." and "on the other hand it's bad because". Concerning the range of interests, the children differed in the scope of their moral concern, as will be seen further below. Deontological Arguments in the data which might be characterised as deontological tended to find expression in the notion that there are some limits which must be set to human activity such as science. The bases for those limits were the need for human responsibility towards nature (stewardship as opposed to ownership); accountability towards a higher authority (God or an ethical code); the existence of human rights. "Human beings don't have the right to change other living things either in a positive or a negative way" (17 year old girl from Germany) "We don't own the world after all" (17 year old girl from Finland) "We have been lent the world in fact" (11 year old boy from Germany) Principlism The four principles of Beauchamp and Childress, as might be expected, were not a particularly fruitful framework for analysis of the data, 1 The sample for the Biocult project consisted of 654 young people drawn from 3 or 4 schools/colleges in each country (Finland, Germany, Spain, UK). Boys and girls age 11-18 were included, from different social backgrounds and covering the range of academic ability found in mainstream schools. Biocult was designed as a pilot study and it is not claimed that the sample is representative of the countries as a whole.
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as the questions were not specific to biomedical ethics. There was some evidence of beneficence-type arguments and concern for those who suffer. A different framework of principles was adopted for the analysis of the arguments in the data: nature-centred, human-centred and self-centred. There are areas of overlap with arguments of a consequentialist and deontological sort. Those who were nature centred were cautious about biotechnology and saw a need for limits to the use of science and technology. They assessed risk and benefit in relation to the environment and the whole of nature. The human-centred group agreed with everything that might be seen to benefit human beings and had human centred concerns. They saw risk but their view of risk was different from that of the nature-centred respondents. Rather than considering whether something might damage nature or be cruel to animals they asked if it would benefit and be safe for humans. The self-centred perspective was expressed by a small group, around 7% of the sample, more boys than girls and more younger than older respondents. In their responses they either gave a "why not" or "so what" type of answer or considered it only from their own point of view. This group did not consider effects, risks or benefits or display any consideration for other human beings or for nature. Below are some of the assumptions young people made when considering specific applications or general attitudes to science, technology and the natural world which illustrate the three world views. Nature-centred principles showing a concern for nature and a lack of faith in human beings. Human beings are potential or actual destroyers of the world "[Scientists] get more pleasure out of leaving destruction in their wake, than if they had remained unknown" "...the world is not ours and we are destroying it" "...we might destroy important things without noticing" Nature as fragile and precious "..if we don't make a sacrifice we will destroy the Earth..." "we ought to leave nature to its natural course" The interconnectedness of the whole of nature - equality between humans and animals "we can't do what we like [to animals] the planet is also theirs" "people are part of this world and it doesn't belong to them.."
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Human beings will not regulate themselves, solutions will have to be imposed and enforced "a sort of commission should be installed to supervise and control all scientists dealing with these matters" Human-centred principles showing faith in the ability and will of human beings (particularly in the "developed world") to solve problems. The value of human life above animal life "Human beings are more superior than any other animal..." The rights of humans to use nature and animals for their own purposes "We can use it [nature] and it is very useful for us". (Comments on the possibility of using genetically engineered pigs" hearts for transplants) "I'm in favour of what is best for man. It doesn't matter where the heart comes from" "It's not such a waste of a pig's life" The intelligence and power of human beings "We can decide because we have the technology". "Scientists have invented more and more computerised ideas so we can do anything".
modernised
and
Democratic solutions to decide what types of research should go on in biotechnology "Ask the people" "The people should decide" "[Decide] through international conferences - but take into account people's culture level so you know how valid their opinion is" Self-centred principles Only one principle which is to consider the issue from the point of view of your own immediate benefit. What's in it for me? (We can use science and technology to do what we want because..)
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"We are only helping ourselves. If we make a few mistakes so what?" (in relation to specific applications of biotechnology) "I don't need it because I eat what I want but don't put on weight" / don't care what other people do/1 don't care about risks or dangers "There is no solution "... (to an environmental problem) "He can do what he wants" Conclusion Søren Hølm has examined three types of relationship between ethical theory and empirical research: parallel, symbiotic and integrative. Having collaborated on a project involving philosophical analysis and empirical research we thought about which if any of these relationships characterised our work. Of those Hølm gives, the symbiotic interpretation is the closest to our experience. However, rather than modifying the theoretical core in the light of the other discipline, we found the two to be complementary in so far as they represent the same ideas expressed in their own discourses. One example is ideas of "natural". In philosophy the idea of the natural is problematic both empirically and morally. Where "natural" is used as a descriptive category there is considerable disagreement over what counts as natural. And where it is used evaluatively e.g. to oppose what is seen as "unnatural", it may, notoriously, rule out too much, such as the practice of medicine. In sociology the idea of the natural is problematic also since what is considered natural is culturally and historically specific. For both disciplines it is nevertheless important to ascertain prevailing interpretations of the concept and to identify changes in social values. A quotation from Kant, who claimed that his supreme principle of morality was drawn from ordinary moral judgements but not generalised from examples, illustrates the shift in thinking about nature and the natural; "No man ought to mar the beauty of nature; for what he has no use for may still be of use to someone else. He need, of course, pay no heed to the thing itself, but he ought to consider his neighbour" (Kant, 1963, p.241). It is no longer socially acceptable to assert explicitly the idea that nature has no value other than its usefulness to human beings, as we have seen in the children's comments above. Kant would, however, have no time for "the disgusting hotch-potch of second-hand observations and semi-rational principles on which the empty-headed regale themselves..." (Kant, 1948, p.74) Acknowledgement We are grateful to the Commission of the European Communities for funding the Biocult project which investigated cultural and social objections
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to biotechnology. This work forms part of Biocult and has benefited from discussions with the participants; Heta Häyry, Matti Häyry, Jeantine Lunshof and Midge Whitelegg.
References Alderson P., (1991): Abstract bioethics ignores human emotions. In Bulletin of Medical Ethics, 68 pp. 13-21. Beauchamp T.L. and Childress J.F. (1979, 1983, 1989, 1994): Principles of Biomedical Ethics. O.U.P New York, in four editions. Blackhall L., Murphy S., Frank G., Michel V., Azen S. (1995): Ethnicity and Attitudes Toward Patient Autonomy. In Journal of the American Medical Association, Vol.274, no. 10: 820-825. Gillon R. (1995): Editorial Defending "the four principles" approach to biomedical ethics. In Journal of Medical Ethics, Vol.21, no.6:323-324. Gracia D. (1993): The Intellectual Basis of Bioethics in Southern European Countries. In Bioethics, Vol.7 no.2/3: 97-107. Green R. (1990): Method in bioethics: a troubled assessment. In Journal of Medicine and Philosophy, 15: 179-97. Hølm S. (1995): Not just autonomy - the principles of American biomedical ethics. In Journal of Medical Ethics, Vol.21 no.6: 332-328. Kant I. (1948): Groundwork of the Metaphysic of Morals translated by Paton H.J. as The Moral Law Parson E. and Atkinson P. (1992): Lay constructions of genetic risk. In Sociology of Health and Illness, Vol.14 no.4: 437-455. Nord E. (1992): An alternative to QALYs: the saved young life equivalent (SAVE). In British Medical Journal, 305: 875-7. Nord E. (1993): The relevance of health state after treatment in prioritising different patients. In Journal of Medical Ethics, 19: 37-42. Rawls J. (1972): A Theory of Justice. O.U.P Oxford. Sayer D. (1989): Readings from Karl Marx. Routledge, London. Snowden C. and Green J. (1994): New Reproductive Technologies: Attitudes and Experiences of Carriers of Recessive Disorders. Centre for Family Research, University of Cambridge. Weber M. (1968): Economy and Society. Vol.1 Bedminster Press, New York. Wertz D.C. and Fletcher J.C. (1988): Attitudes of Genetic Counselors: A Multinational Survey. In American Journal of Human Genetics, 42: 592-600.
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Economies Rational Decisionmaking in Ethics of Health Care. Qalys: Some Methodological and Ethical Issues1 Helga Kuhse, Peter Singer, John McKie, Jeff Richardson, Monash University, Clayton Erik Nord, National Institute of Public Health Oslo, Norway
Introduction: Limited Resources - Means and Ends Health care resources are inadequate to provide all the beneficial services and treatments people may need or want. This means we need to find some way of deciding how our limited health care resources are to be spent. How much should be allocated to screening programs for breast cancer, for example, how much to saving extremely premature infants, and how much to heart transplants and hip replacements? Is there a rational answer to this question? Many economists and others take it as given that the answer is "yes". As the prominent health economist Alan Williams puts it: "When we do not have enough resources to do all the good things we would like to do, commonsense suggests that we concentrate them where they will do the most good." (Williams, 1988, p. 22) When it comes to allocating scarce medical resources, rationality understood as the ability to devise and implement procedures that will help us achieve our ends reliably and efficiently - is sorely needed. After all, it is difficult to think of any plausible ethical theory that would not at least incorporate a welfarist element in its vision of the good, and which would not, therefore, accept that it is better, other things being equal, to allocate our limited resources in ways that will produce more aggregate welfare, rather than less. This paper arises out of a Research Project Grant awarded by the National Health and Medical Research Council of Australia to Dr. Helga Kuhse and Prof. Peter Singer. The assistance of the NH&MRC is gratefully acknowledged
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There is, however, a tendency among modern economists and some others to conflate two senses of rationality - what I want to loosely call a rationality of means and a rationality of ends. The former helps us discern the means to achieve certain ends; the latter relates to the ability to discern worthwhile ends or goals, and to fashion them into an overall vision of "the good". Put differently, rationality in the first sense might be said to relate to the solution of technical problems; rationality in the second sense to the defence of practical goals - to ethics. It is the aim of this paper to pry these two senses of rationality apart, to raise some methodological and ethical problems on the way, and, finally, to offer some tentative reflections on the lack of a "fit" between the outcome of a recent empirical study on what Australian consumers of health care want and what is implied by a dominant contemporary economic measure of outcome, the QALY. (Torrance, 1985) Enter the QALY To be able to measure efficiency, we need to define "the good" produced by particular medical interventions. An obvious starting point is the number of lives saved (or, more accurately, the number of lives prolonged): one treatment is more effective than another if, for a given cost, it saves more lives than the other. Does it matter for how long a life is saved or prolonged? Surely it does. A treatment that extends life for three years is a good thing, but one that extends life for six years is better. This entails that if we have a treatment that will permanently cure an otherwise fatal condition, we will, other things being equal, achieve more overall benefit if we apply the treatment to a person who is 30 years old, rather than to a person who is 60; for the former can expect to live 30 years longer than the latter. Hence, to measure aggregate benefit, we need to take note not of lives saved, but rather of life-years saved. It is, however, decidedly odd to think that we should be able to measure health care benefits without taking account of the quality of life in question. While extension of life is ordinarily a worthy goal, so is the alleviation of pain, disability and of suffering. Indeed, patients will often trade off length of life for quality of life. Those suffering from cancer may refuse potentially life-prolonging but debilitating chemo-therapy, and those suffering from severe angina may be willing to incur the risk of by-pass surgery, even if the operation will affect only the quality, but not the quantity of life. This means that any credible measure of health benefit must have two dimensions: improvements in the length of life, and improvements in the quality of life. These two dimensions find expression in the concept of the quality-adjusted-life-year, or QALY. The general idea is simple. How many years of life with a particular condition - say, being bed-ridden -
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would you be prepared to give up in order to have one year of life without that condition? Alan Williams explains it in the following way: The essence of a QALY is that it takes a year of healthy life expectancy to be worth 1, but regards a year of unhealthy life expectancy as worth less than 1. Its precise value is lower the worse the quality of life of the unhealthy person (which is what the "quality adjusted" bit is all about). If being dead is worth zero, it is, in principle, possible for a QALY to be negative, i.e., for the quality of someone's life to be judged worse than being dead.(Williams, 1985, p. 3) In short, Williams continues, a "beneficial health care activity is one that generates a positive amount of QALYs, and... an efficient health care activity is one where the cost per QALY is as low as it can be." It follows from this that high priority in the allocation of medical resources should be given to medical treatments and interventions where the cost-per-QALY is low, and low priority to those where the cost-per-QALY is high. (Williams, 1985, p. 3) The need for such a common standard to measure efficiency in the distribution of limited health care resources is difficult to deny. But is the QALY, in fact, the appropriate tool in our quest for efficiency? Some Methodological Issues The task of making "quality adjustments" operational has been tackled in various ways by different research groups, but essentially involves two stages. In the first stage, different health states have to be described by the researchers (for example, being wheel-chair bound, or being comatose) and, in the second, they have to be valued. This is generally done by asking people to rank health states from best to worst, and then asking them to rank them relative to each other, on a scale that extends from being healthy to being dead. (Williams, 1988, p.22) Different health states are likely to have different values for different people. Until and unless it has been established what determines such differences, and how these differences, if any, might be reflected in public policies, the question is: who should be interviewed, and whose preferences or values should count? Those of patients who are now suffering from the relevant condition; those of patients who did, in the past, suffer from the condition, or should the relevant indices be derived by interviewing members of the general population? The latter group would include both present and past patients, but would also include many people who have no experience of illness or disability. Would it therefore not perhaps be better to ask those who have, in one sense of the term, most experience of various health states: doctors and nurses? Another, more fundamental, issue is what is to count as of equal value between one person and another, or, more generally, as "the good" to be achieved. From the QALY perspective, one year of healthy life is
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regarded as of equal value, no matter whose life it is. This egalitarian conception of welfare in terms of health states does, however, involve a somewhat truncated notion of welfare, or of the value of human life. After all, there is more to a good human life (or to welfare) than normal health: one's material and social circumstances matter, as do one's relationships, and one's general satisfaction with the kind of life one leads. (Lockwood, 1988, p. 42) Then there are what one might call "wider social considerations". Again, these are not part of the QALY approach, which focuses exclusively on health-related benefits to the patient. The fact, for example, that giving priority to patients with dependent children (over patients with no dependent children) would increase overall welfare would not, from the QALY perspective, be a reason for prioritising. Nor would other non-welfare related considerations play a role. While we might think it appropriate that a government trade off some potential health benefits against funding the arts, the QALY approach does not advocate that we give priority in our treatment decisions to an artist over a non-artist, because the former, but not the latter, will produce works of art. (Kamm, 1994, p. 30) The QALY is thus not a tool designed to maximise aggregate welfare. While it is a maximising approach, it is importantly different from utilitarianism and, unlike classical or eudaimonic utilitarianism, does not rest on a complete theory of value. Rather, the QALY approach takes it as given that the maximisation of health outcomes is a worthy goal, and provides us with a method, or the means, to achieve this goal. Or so it seems. The quality-of-life indices that are used in practice are derived from people's actual expressed values, preferences and attitudes. Why? Because it is assumed that the maximisation of health is a worthy goal and that people are, overall, the best judges of what contributes to, or detracts from, the value of their lives and that asking people about preferred health states will, as a matter of fact, maximise aggregate health value? Or is it because it is thought to be democratically proper that resource allocation reflect, as far as possible, people's actual preferences - irrespective of whether or not this procedural approach will in fact maximise value? (Lockwood, 1988, p. 40) While the first assumption would, if true, validate the QALY approach as a rational means to the maximisation of health care benefits, the second would require defence in terms of a different goal, or a "rationality of ends": that people should be consulted because this is the right or proper thing to do. Both justifications raise serious questions for the QALY approach. An Australian Survey: Is the QALY Approach Democratic? Let us begin by focusing on the second justification of the QALY approach. To the extent that QALY scales are based on the actual
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expressed preferences of an appropriate sample of health care consumers, it might be thought that they are the only way of assessing the value of health care that is truly democratic in spirit: they give the people what they want. But is the QALY approach democratic, that is, does it reflect the values of health care consumers? A recent empirical research project, conducted by the Centre for Human Bioethics and the NH&MRC National Centre for Health Program Evaluation in Melbourne/Australia, suggests otherwise. Our research was based on identifying four key distributional implications of the QALY maximization approach, and our overall finding was that Australian public opinion, to the extent that it is reflected in our survey results, is generally strongly supportive of the view that people should have equal access to health care, even if this entails a loss in efficiency. In other words, people were found to be willing to forego overall benefits for the sake of equity. The first key distributional implication of the QALY approach (and the only one I will touch on here), related to the question of age. The QALY approach assumes that, in the case of life-saving or enduring life improving interventions, young patients should have priority over older patients, because younger patients will, other things being equal, derive more QALYs from a given treatment; Respondents were asked three age-related questions. A very compressed summary of the responses is as follows: (1)
Life-threatening illnesses
Our respondents overwhelmingly rejected the idea that among people with life-threatening illnesses, younger patients should have some priority over older patients. Fewer than one respondent in five took this view. Of the remainder, about half thought that people should have the same priority with respect to life saving treatment no matter what their age is, but would make an exception if the patient were very old. (2)
Permanent improvement in quality of life
We obtained a very similar response when we asked, not about treatment for life-threatening illnesses, but about medical care that improves quality of life permanently. Here just a little more that one in five favoured giving priority to the young, and three out of four altogether rejected age as a basis of distribution.
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(3)
Newborn infants versus young children
We asked a specific question about a choice between a young child and a newborn infant, both in need of the same organ transplant. Only one in twelve respondents chose the answer consistent with the QALY approach: that the newborn infant should have the organ, and slightly more than half of our respondents expressed no preference, while slightly under half thought that the young child should have the organ. These responses show a strong disagreement with the idea of giving priority to younger patients over older patients, and suggest that, at least in Australia, advocates of the QALY approach cannot claim that the QALY approach merely reflects the existing values of the community. Australians, it seems, are not health care welfare maximisers. Qalys, Rationality and Ethics We started with the intuition that it is rational, other things being equal, to distribute resources in such a way as to ensure that they will do the greatest good. Does this mean that those who reject the QALY proposition that priority should be given to the young over the old are acting contrary to reason? It depends on which kind of reason or rationality we have in mind. Consider the following two health-care schemes, one of which we could choose to regulate the provision of medical care in our society. Scheme A is based on the QALY approach. It gives a lower priority to people over a certain age, say 60, in receiving certain high-cost lifeextending technologies, such as dialysis, by-pass operations, or angioplastic. As a consequence, funds would become available for the further development of these services, and the possible development of other services. Scheme Î’ rejects rationing on the basis of age. With medical suitability and need being the only selection criteria, it can afford to develop just one such service - e.g., dialysis - making it available to anyone who needs it; or it can develop several technologies and ration them by, say, lottery. Which scheme should we rationally choose? If we are choosing from behind a Rawlsian veil of ignorance in the original position, prudential reasoning would demand that we consider the question of health care not merely from the perspective of one point in time (Derek Parfit's "time slice" [Parfit, 1984, Part III]), but from a perspective which is impartial between moments in time. We are all young once, and most of us would like to have as long and healthy a life as possible. This means we should choose Scheme A. It would maximise our chances of having as many quality adjusted life-years as possible. Certain expensive life-extending technologies would now not be available to us when we have reached a
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certain age, but through acceptance of this approach, we would maximise our chances of living as long and healthy a life as possible. To reject Scheme A in favour of Scheme Β would be irrational - if, that is, the maximisation of QALYs is what we want. Maximising health outcomes must, however, not, as we have seen above, mistakenly be assumed to be the same as maximising "the good", or even aggregate welfare or utility. After all, we could, on the face of it, create more welfare by, for example, giving some priority to parents of dependent children. Hence, if we are welfare maximisers, we might want to reject the QALY approach as too limited - on the basis that it confuses the part (maximising QALYs) with the whole (maximising aggregate welfare). In any case, we would be entitled to ask proponents of the QALY approach why we should assume that their limited approach would, as a matter of fact, help to maximise aggregate welfare. And, of course, if we think that there is more to a good human life, and to ethics, than maximising aggregate welfare, then we would want to fashion the QALY (or a more extensive welfare approach) into our larger vision of the good - what I referred to as a "rationality of ends". In other words, while we might not want to deny that health and general welfare are part of "the good life", we might want to deny that it is identical with it. At this point, let us return to our empirical study. Those who participated in the survey rejected the maximisation approach, in favour of some equality of access. They may have done this either because they regard equality of access as a worthwhile ethical goal in itself, or because they think that such an approach will have better overall social consequences, i.e., maximise aggregate welfare. After all, the QALY approach may ensure that we get the best health value for each dollar spent, but it may also leave some individuals or groups feeling unfairly disadvantaged and detract from feelings and expressions of compassion and sympathy for those in need of health care. Would the QALY approach actually leave individuals unfairly disadvantaged - rather than merely create the impression that it does? The answer would not only depend on one's defending a particular theory of justice or fairness, but also on one's defence of a particular view of personal identity. Moreover, even if one took the view that fairness is better assessed on the basis of a whole life, rather than in terms of each "time slice" of each person's life being a separate claimant on scarce resources, this would still leave one with some considerable problems. Those in need of particular resources, and their loved ones, may not share the philosophers' and economists' view of justice and rationality, either because they are unable to detach themselves from their immediate circumstances and a "time-slice" view of life, or because they have not been able to think these matters through on a rational basis. This raises the central question of how much weight to give to the preferences of people as against some substantive ethical value - such as
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the maximisation of happiness, or a particular conception of justice, or a "rationality of ends". Economics and Ethics It is sometimes thought that these types of question can be avoided. It is not uncommon for some economists, for example, to assume that their conception of welfare has the advantage of avoiding puzzling questions about the truth status of value judgements, or what I loosely called a "rationality of ends". After all, they might say, contemporary understandings of welfare are based on preferences, rather than on some substantive understanding of the good, which would require defence in terms of an ethical theory that underpins it. "The good", it might be said, is co-extensive with what people want. This assumption applies also to the QALY approach. The QALY approach regards it as given that people prefer to have more of a good thing (healthy life) rather than less for each health dollar spent. But this does not, of course, make the QALY approach qualify as an ethical theory even if we assume, as not everyone would be willing to do, that "the good" is coextensive with what people want. The point is this: people may value efficiency in the allocation of scarce health care resources, but only as one of a number of goals that give meaning and value to "the good life". In short, then, the QALY approach does not, and cannot, avoid questions of ultimate value, or of a "rationality of ends". If, as our survey suggests, (the Australian) people do not want a QALY-based allocation of health care, on what basis can economists advocate it? In Section III, we distinguished between two possible theoretical bases for adopting, the QALY approach: Firstly, that the maximisation of health outcomes is a worthy goal and that this goal is best achieved by asking people about their preferences; and, secondly, that it is proper that resource allocation reflect, as far as possible, people's actual preferences, irrespective of whether that approach will maximise value. Our survey suggests that the second claim cannot, at least in Australia, be made for a QALY model of the allocation of health care resources. People not only have certain preferences when asked to choose between different health states for themselves, they also have preferences about the way in which health care resources should be distributed. And, of course, if we assume that it is the preferences of people that ought to count, then there is no obvious reason for taking the first set of preferences seriously, while dismissing the latter. This presents an obvious problem. It could be solved by either abandoning the claim that people's preferences as captured in the QALY approach should be the exclusive basis for allocating health care resources; or by defending QALYs on the ground of ethics - that is, that they are not only a rational means to a worthwhile end, but that the end itself - the maximisation of QALYs - is "rational", insofar as
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it can be defended on ethical grounds, in terms of an overall vision of "the good". Concluding Questions In the allocation of scarce health care resources, rationality - the ability to devise and implement procedures that will help us achieve our ends reliably and efficiently - is badly needed. We cannot avoid defending a particular notion of efficiency, and examining our priorities in light of this. The QALY can help us in this task and is, for this reason, greatly to be welcomed. A number of fundamental questions do, however, remain. QALYs take people's preferences and values in the ranking of different health states seriously. There is much that is appealing about this methodology as long as it is remembered that there may always be a gap between people's expressed values and preferences, and "the truth". This recognition will ultimately leave one with the question of how much weight to give to the theoretical values derived from ethical theory, as opposed to expressed preferences of those whose views were sought. Take the Oregon Plan, where the citizens of Oregon were asked to rank the impact of having to live the rest of one's life with some physical or mental impairment or symptom. The wearing of glasses was ranked about the same as not being able to drive a car, use public transport, and having to stay at a hospital or nursing home. (Daniels, 1994, p. 28) Are these rankings the result of a poor methodology? If they represent actually held attitudes and values, must they be taken at face value? (Daniels, 1994, p. 28) Similarly when it comes to people's preferences about justice and fairness. The mere fact that members of a community perceive an approach as unjustifiably discriminatory is not in itself a sufficient reason for rejecting it. This leaves us with the underlying problem of having to defend a substantive conception of "rational ends" - be this in terms of a justice based approach, or in terms of a substantive utilitarian conception of the good. Unless we are able to appeal to some prior notion of "the good", we are lacking the tools to correct the democratic process - and we are illegitimately conflating what I called a "rationality of means" with a "rationality of ends". We can only legitimate the former by some coherent understanding and defence of the latter.
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References Daniels, N. (1994): "Four Unsolved Rationing Problems - A Challenge", Hastings Center Report, Vol. 24, July-August. Kamm, F. (1994): "To Whom?", Hastings Center Report Vol. 24, JulyAugust. Lockwood, M. (1988): "Quality of Life and Resource Allocation" in (eds.) J.M. Bell and S. Mendus: Philosophical and Medical Welfare, Cambridge University Press. Parfit, D. (1984): Reasons and Persons, Oxford University Press. Torrence, T.W. (1986): "Measurement of Health State Utilities for Economic Appraisal: A Review", Journal of Health Economics, Vol. 5. Williams, A. (1988): "Who is to Live", In Future, Issue 8. Williams, A. (1985): "The Value of QALYs", Health and Social Service Journal, July.
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Methode of evaluation of quality of life Kenneth Kearon, Trinity College, Dublin
I want to look at the occasions when the notion of quality of life is invoked in making decisions about the treatment or non-treatment of patients, and how treatment might be prioritised, and what we might be able to learn from these examples. In particular, I want to look at three areas. The first areas where quality of life language is used is in discussion to withdraw treatment for those who are dying. While the whole area of the withdrawal of treatment and euthanasia is currently very controversial, even those who take a very conservative approach will accept that a point may be reached with a terminally ill or dying patient when discontinuance or treatment is appropriate. The Karen Quinlan Case is probably the most accepted and uncontroversial example of this. The issues in this area expressed in all sorts of language - medical vitalism versus being alive; being alive versus having a life; sanctity of life versus quality of life; biological versus biographical life; and so on. All of these centre on a distinction which we all wish to make between two senses of "being alive". Any functional biological organism is alive, as distinct from being dead. In this sense plants and insects can be alive as well as animals and human beings. There is another sense of being alive, in the sense of heaving a life, being a person with a past and a future. It's a distinction we all understand, but which is difficult to express. I find the distinction between life in the biological sense, and life in the biographical sense helpful In distinguishing the two. Part of the significance of the Karen Quinlan case was the fact that it helped to draw this distinction between the two senses of being alive, and the recognition of the fact that biological life in the absence of biographical life has a lesser value, and we should alter the way we respond to it, in this case it was the acceptance that her biographical life was over and that it was not appropriate to pursue treatment which would serve merely to extend her biological life. The current controversy about euthanasia is in part about where to draw the line, and the nature of the response, but the vast majority or
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opinion is agreed that a line can be drawn somewhere and that below that line life is such that there is no moral imperative to strive to sustain it. Popular as well as ethical opinion often expresses this distinction in terms of quality of life. When we accept that quality of life is minimal or non existent we speak of 'mere existence' or 'vegetative existence'. While there may be debate about what constitutes a quality of life (e.g. while there appears to be a consensus that PVS represents no quality of life, there is disagreement about severe handicap or degrees of handicap) the existence of a quality of life indicates a level of life worth preserving and therefore worth living. he second area I want to mention, very briefly, is that of severely handicapped newborn infants. The discussion about circumstances when active treatment is not pursed in the case of such infants where there is no biography underlines that fact that potential quality of life as well as actual quality of life is valued one of the factors that makes decisions about this group in medicine into a separate class is precisely that fact - that there Is no life history in existence with which to compare possible options, and yet we can still talk of the presence or life with these patients. The third area. Much of the discussion about evaluating the quality of life today has shifted from these boundaries of life questions to the area of the allocation of scarce medical resources and the setting of priorities in health care. This issue has been focused most recently in attempts in Oregon in the United States to use quality of life assessment in public health policy as a basis for developing a set of priorities in health care. The goal was a noble one - the expansion of Medicaid to 100% of all residents living in poverty. This could only be done if a means could be found to identify those medical services which were sufficiently important for the health and well-being of the group concerned, and exclude those services which did not warrant priority. A commission was set up which eventually decided to organise medical services into categories, and to rank services within each category according to 3 criteria: value to the individual, value to society, and whether the category was judged to be necessary.
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The aim was to place medical services on a list according to priority, and if acceptable the legislature would establish a point below which services would not be provided, and above which they would be available. Central to the whole Oregon experiment was the concept of quality of life or quality of well-being. This was fundamental to the notion of quality Adjusted Life Years (QALYs), which represent an attempt to integrate quality with quantity of life. Some treatments may prolong life without improving its quality; others substantially improve quality of life without impacting on life expectancy; others improve both, and some have little impact on either. By integrating both quality of life and life expectancy into one calculation some impartial basis for decisions could be made, both for individual patients and for health policy. There is no need here to detail the method of calculation, except to say that life expectancy from particular treatments was gauged by surveying members of the medical profession, and quality of life by a telephone survey of over 1000 residents asking them to estimate the degree to which a variety of impairments would diminish quality of life. The ethical questions raised by such a proposal are enormous: 1) The assumption that quality of life can in some way be measured accurately enough to become the basis for decisions is highly questionable. What does it mean to say that one year with full quality of life is of more value that nine years with one-tenth quality of life? Notoriously, people make very differing judgements about what constitutes impairment or quality of life, and while a survey of 1,000 healthy people may help to even out the variations, it cannot hide the fact that quality of life is essentially a personal opinion, and it is little comfort to know that one's own decisions are out of step with wider community opinion. Also, while a healthy person may give one opinion about quality of life, that opinion may change dramatically when that same person is actually suffering from the impairment himself. The fact that something is subjective does not in itself rule out the possibility that it might be measured in some way, but quality of life judgements are liable to change with perspective and with time, as well as from individual to individual. Such a degree of variation does indicate that calculation may be impossible. 2) The Oregon Health Services Commission, which was the body charged with overseeing this project, at first interpreted its responsibility in utilitarian terms though this approach was rejected at a later stage. So
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while not used in the Oregon project the utilitarian principle is worth exploring further since it is often raised in this context. Introducing the utilitarian principle as an appropriate model for addressing health decisions means that one should decide how to allocate medical resources on the basis of the greatest good for the greatest number of people. One of the difficulties is in deciding who assesses what is good in this context. Health decisions often have a degree of risk, which when spread over a population may be minimal and so worth taking, but when the issues involve life and well-being, may be such as to contradict an individual's wishes. Further we may ask the extent to which we ought to take personal wishes and opinions into account, hitherto regarded as sacroscant in medicine? The utilitarian principle has its champions, but within medicine it can be seen as violating personal autonomy and sacrificing patient rights for the sake of a more nebulous common good. The preferences of a representative group of people in society have little relevance to a patient when confronted by a choice which he thinks he ought to be able to make himself. So where do we go from here? Qalys have their advocates, and they have been widely discussed for many years. Oregon is important because it proposed to turn the theoretical discussion into practice. Many in the bioethical community have their doubts about their moral validity, pointing not least to the fact that such proposals often come from the area of health economics and administration, where the pressure is to make decisions, and if so then to ensure that they are made fairly. The detached nature of Qalys suggests a degree of fairness which is superficially attractive. However if we take the analogy of civil rights we already accept that society must treat everyone equally (though not of course the same) and among other things this implies that the state must regard the life of each citizen as equal to that of another. An implication of Qalys is that a situation might arise where my life might be sacrificed in order to improve the quality of life of a number of others, and this would obviously be contrary to the basic civil rights we all assume in modem Western society. Surely there is something wrong with a method of decision making which brings these results. However, the need to make decision will not go away. Priorities in health care need to be established if health care in recent years has made this even more urgent. From the individual patient's perspective decisions
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have to be made also. As has been already said, treating equally doesn't mean treating each person in the same way - but then how can such decisions be made fairly. So what can we learn from the discussion so far? I think there are a number of factors we can establish. First, discussions about the quality of life of those who are PVS or hopelessly ill indicates that we accept that there is a base line below which quality of life is permanently absent, and which alters our responses to that patient in terms of treatment. Above that line we see a life worth living and therefore worth preserving. There is considerable debate as to where the line should be drawn (it will always be hazy line anyway) and what treatments are appropriate. However the fact that a line should be established is significant, and most accounts of Qalys don't allow for this. Related to this is a distinction sometimes made by between lifesaving and life-enhancing treatment. This is an important distinction. There is general acceptance that life-saving treatment should generally have priority over life-enhancing treatment, and when coupled with the notion of a base line to quality of life, should avoid the situation of pursuing the preservation of life at all costs. The Oregon exercise focused on the change in quality of life expected with a specific treatment, and the extent to which a patient will be better off after a specific treatment. In this way it avoided the criticisms surrounding the making of absolute judgements of quality of life, which can be accused of being discriminatory because they are either subjective or based on criteria of social acceptability. In Oregon no one was being judged on the quality of his or her life it was the change in quality of life brought about by a specific treatment which was being measured. However even that judgement of a change is itself always a subjective one. Oregon based its measurements on the opinions of a large number of healthy people randomly chosen in an attempt to remove bias. However one obvious bias remained - that these were the opinions of healthy people concerning (admittedly imaginary) ill people. Notoriously one's opinions about quality of life change when one is ill oneself. People learn to adapt emotionally to reduced mobility, and yet for others with a relatively minor impairment overcoming it can take on the highest priority.
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Similarly, to survey those who are ill and use that as a basis for decisions will be biased by the illness or impairment being suffered. Perhaps this points to the basic problem with the assessment of the quality of life. Quality of life is an irreducibly subjective judgment, and it cannot be made more objective by ranging over a number of people; no matter how much I can be assured that the vast majority of people think χ about the quality of life, that can never affect my own perception of my quality of life. That is always subjective and infinitely variable depending on circumstances and perspective. So perhaps I am forced to conclude that Qalys are doomed to failure. However that still leaves the question unanswered - how do we prioritise health care, and how do we allocate resources?
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Prioritising by prognosis John Harris, Manchester Uniersity, Manchester
It is a commonplace that there is the strongest obligation to maximise the benefit obtained by the deployment of public resources for health care. Maximising beneficial health care is rightly perceived by both practitioners and the public not only as the expression of proper moral and professional concern for patients and indeed for public health, but also as a dimension of political and social responsibility. Maximising beneficial health care is not only right, but it is also what we mean by efficiency in the delivery of health care. All this sounds unexceptionable until one examines just how the term 'benefit' is standardly used in assessing health care delivery and asks what exactly we mean by 'benefit What is beneficial health care' Patients rationally want three things from health care. They want the treatment that will give them maximum life expectancy coupled with the best quality of that life, and, naturally they want the best possible opportunity or chance of getting the combination of quantity and quality of life. So rational patients in a free market with unlimited resources to purchase for themselves, will select the institution, the personnel and the therapy that will give them the best possible chance of achieving the longest and best quality of life that money can buy. What's true of patients has also been true of providers. Just as patients want the best treatments, (that is the treatments which offer the best chance of the best quality and quantity of life) so providers naturally tend to want the best patients, that is the patients who have the best chance of the longest and best quality of remission. Now it is of course natural for providers to want the best patients, just as it is natural for patients to want the best treatments. For one thing, providers 1
Though not necessarily only these three of course.
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who can boast the best survival rates at the best quality of life, will be more appealing to patients looking for the best combination of institution and personnel for their treatment. They will also look more impressive to other donors or service providers, such as governments or health insurers. Providers who can do this not only look most efficient, they are likely to be the most popular. Just the recipe for success that every provider wants. However, this syndrome has built into it what we might call "Bob's Logic". Sheridan's hero , Squire Bob Acres, facing a duel with his rivals but wishing above all to come out of it safely, wished the duel to be conducted in a way calculated to make his objectives the most likely of success. Discussing the circumstances with his second, the redoubtable duellist Sir Lucius Olrigger, he reasoned, with impeccable logic given his measure of a successful outcome, that the duel would be best conducted if the protagonists were a good distance apart: "I tell you, Sir Lucius, the farther he is off, the cooler I shall take my aim". Sir Lucius, who has a different conception of the purpose and point of duelling, scornfully responds: "Faith! Then I suppose you would aim at him best of all if he is out of sight!". Bob's logic leads providers to prefer those patients who are the most healthy and the least in need of treatment There is an obvious incompatibility between what patients rationally want in providers and what providers rationally want in patients. Whereas patients want the best chance of the best for themselves; providers want something rather different. It is probably true that providers do share the ethic and the interests of patients to the extent that once they have taken on a patient, they do want and strive to do the best for that patient. However there are two obvious constraints for providers. The first is that they have a natural tendency to be selective in the patients they take on, and accept only the patients who are likely to do well in their terms, that is fast longest and recover best. Moreover, having accepted a patient they may still want to select between patients of theirs to achieve the same end. Patients of course want to be accepted without question or qualification2, and once accepted, want the best treatment for themselves, not the best treatment for the providers, nor the patient body as a whole, nor for society. It does not follow from the fact that as a patient I want the best chance of the best quantity and quality of life, that I have a moral obligation to defer to patients with a better prognosis than myself, nor does it follow that
1
Sheridan, The Rivals Act V Scene III. Oxford University Press 1968. The play was first performed in 1775.
2
In at least two senses of 'qualification'.
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providers ought to select patients on this basis, nor that doing so is either dictated by deference to patient choice or by justice1. I have argued at length elsewhere and for over a decade now, that justice does not require that we2 prioritise patients either on the basis of life expectancy or quality of life and I will not now repeat those arguments. I want here to examine one aspect of what is commonly meant by "maximising benefit" in this context, namely choosing to prioritise the care of patients who have the best chance of benefiting from treatment. Although all three things that patients want from health care are part of their prognosis, I shall for present purposes refer to a patients' prognosis as their chance or opportunity of being able to benefit from treatment and exclude the dimension of a prognosis which has to do with the degree of benefit they can obtain. I am interested then in a patient's chance of their treatment yielding some benefit and I shall further assume that the chance we me talking of is always that of obtaining the maximum degree of benefit available to that particular patient - the maximum remission in terms of length and quality3. I shall assume that it is reasonable to express such chances as percentages. The question then is ought practitioners and other health care providers, to prioritise patients on the basis of their prognosis, on the basis of their 1 John Harris "QALYfying The Value of Life", Journal of Medical Ethics, September. 1987. 117-123. and also "Double Jeopardy and the Veil of Ignorance" in The Journal of Medical Ethics. July 1995. 2
"We" here of course means "society" in its public policy on access to care. See also: John Harris The value of Life Routledge 1985. and also Harris 1987 (note 5 above).
3
For other thoughts about what "doing the most good" in health care might mean see: John Broome "Good, fairness and QALYs". Michael Lockwood, "Quality of life and resource allocation" and Alan Williams "Ethics and Efficiency in the Provision of Health Care" all in J.M. Bell and Susan Mendus Eds. Philosophy and Medical Welfare, Cambridge University Press, Cambridge 1988. A recent example occurs in the Report of the Royal College of Physicians Setting priorities in the NHS, September I995 where they define "need" as "capacity to benefit", the implication being the greater the possible benefit the greater the need thus making it impossible, by definition, to have a great need for a small benefit or a weak need for a great benefit.Of course there are chances within chances and a patient's prognosis may be that she has a certain percentage chance of one outcome and another of a better outcome and still another of a different outcome and so on.
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chances of benefiting from health care? Should the patient with a ninety per cent chance of recovery always be preferred to the patient with a forty per cent chance, if they are in competition for resources for health care? The duty to do what is most beneficial. The answer to our question turns on choosing between rival conceptions of what is meant by 'beneficial. For the patient, 'beneficial' means that which well benefit her. The provider, on the other hand, tends to third of benefit in terms of the size of health improvements, bigger naturally seeming better1. Suppose you and I are both patients and rival claimants for treatment. Suppose you have a good chance of a large benefit (long remission of good quality of life) and I have a small chance of a small benefit (short remission with poor quality of life). Supposing for each of us treatment will offer a better outcome than non-treatment " and that we both want our chance of benefit. Is it obvious which of us should get priority? The provider's conception of the good The provider's conception of the good of health care is essentially a public health conception. It sees the business of health care as maintaining and improving public health or the health of the community. This conception of the good of health care is essentially maximising. It is as much served by a policy of increasing the population of the world as it is by improving the health and life expectancy of the existing population. But even if we confine the scope of 'beneficial effects' to lives in being, there are serious difficulties. The provider's conception of the good of health care is also inevitably (though not essentially) age based, in that treating the young successfully inevitably generates more healthy life years after treatment than does treating the old. This providers conception of the good can also make some claims to justice and impartiality. These claims have two dimensions. By treating the maximisation of units of healthy life-time as the objective of health care, rather than treating the health needs and wants of individual people, this conception claims an impartiality of sorts. However, as I have argued elsewhere, it is an impartiality that is partial between persons and impartial only between units of lifetime abstractly conceived2. 1
See note 5 above.
2
This point is enlarged upon in an as yet unpublished paper written jointly with my colleague Margaret Brazier entitled "Public Health and Private Lives". See also: John Harris and Soren Hølm "Spreading Contagion - A note on some ethical issues revitalised by HIV. "in the British Medical Journal 1995.
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Secondly it embodies a faith in the justice of a sort of natural lottery of health that is unwarranted. The fairness of a natural distribution of health depends upon the idea that we are all born equal with equal chances of living to a ripe old age. Illness and accident are on this view, "bolts from the blue" which might equally affect anyone. We of course know this assumption to be false. Our life and health chances are rigged in advance by our genetic constitution and thereafter affected by a myriad of factors including environment, occupation, education, and personal and public responsibility for health1. The genetic part of this complex equation is particularly important because it means that certain individuals and groups are disadvantaged from conception" and will pass on this disadvantage to their descendants. They are congenially disadvantaged. On this view fate has impartially allotted chances of sickness and health and chances of recovery from illness, and doctors work within this given framework. So that if someone is lucky enough to be bom healthy, then this in itself is evidence of a just, or at least not unjust, distribution of opportunities2. On this view, in prioritising those with the best prognosis doctors are merely administering a given distribution of life chances, moreover it is one which both favours public health and the provider's perspective. Since, depending on your world view this distribution has been allotted either randomly by fate, or purposively by one of the gods, or by natural selection; there is an in-built point, purpose or at least impartiality in the distribution which will not obviously be improved upon by the interference of the health care system. Even if the initial distribution of health were just or impartial, it would not follow that we should not disturb this distribution3. Indeed every health care provider believes that we should disturb the natural distribution of health or they would have nothing to do. So the question is, if it is right to treat and attempt to cure the sick and thus interfere with the natural lottery of health, why is it right to prioritise the treatment of those with the best prognosis? The answer to this question cannot be that it is right to attempt to maintain a natural distribution of health that we have already conceded the Tightness overturning!
1
Or possibly from long before. See my Wonderwoman and Superman, Oxford University Press, Oxford, 1992. Chapter 3. 2
See Hillel Steiner An Essay on Rights, Blackwell, Oxford 1994 Chapters 5,7 and 8.
3
See Hillel Steiner An Essay on Rights Blackwell, Oxford, 1994. Especially Chapters 5,6 and 7.
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So, the provider's perspective must be justified in terms of the moral importance of the good that it delivers, or in terms of the consent to such a perspective all those affected, /will not have time this afternoon to examine either of these possible justifications, although I do so in a longer version of this paper. Instead let's look at an alternative perspective, which I shall call, I hope not tendentiously, "the patients perspective". The patient's perspective of the good. Let's start by outlining this alternative conception of what health care provision is for, what ends it serves, in short what good it is. I have suggested that each of us rationally wants for ourselves the best chance we can have (given our personal circumstances - genetic constitution etc.) of the goods that the health: care system can deliver, even if that is a very small chance indeed. Of course this desire will be tempered by the costs to us of delivering such a chance; perhaps in terms of the pain and discomfort of the treatment and the quality of life thereafter It may also be tempered by the costs to others. Would it be better for those I love if I do not survive in such and such a condition, or would my survival really be worth it, if it costs someone else the chance of a better life? My point is not that these are not real considerations for any patient or potential patient, but rather that they are his or her decisions to take. If the patient is entitled to a chance equal to that of any other patient of obtaining beneficial treatment, then only the patient herself can choose to forego her own chance of treatment, either in her own interests or in the interests of others or society. I say "only the patient herself can choose to forego her own chance of treatment" for two reasons. Firstly, because once we permit others to decade who will live and who will die on the basis of the overall good thereby achieved, there is no reason to stop short and confine such decisions to so called health benefits. I may well rationally (and rightly) believe that compared to the value of your existence, my existence is worthless and that the world would be infinitely better for your continued survival than for mine. I may even choose to act on this belief and cede my place to you1. Once however we argue that others may rightly make this calculation, and act upon it, we have taken a step that I suggest is unacceptable. Unacceptable not because it is implausible to believe that such calculations can rationally be made, nor because it could not be true that we world would be a better place if certain people survived while others did not; but for two decisive and complimentary reasons. They are first, that it is very unlikely that in the long term the world would be better if we routinely selected among people according to some conception of the public interest and institutionalised the power to do so. The second is that it is totally incompatible with a central tenet of both our moral and our 1
'You" may be my child, my parent, my mentor, my hero, my leader or literally anyone.
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political theory. That tenet is that each person matters equally, both morally and politically, and hence justice requires that each be accorded the same concern, respect and protection as is accorded to any and that society treats all impartially1. The second reason why only the patient herself can choose to forego her chance of treatment is that if each person matters equally and hence has an equal right to the care and consideration of the health care system of the society of which they are a member, then, arguably, one of the things that follows from this is that each person has the right to have their chance of benefit given equal weight with that of others, whatever that chance may be. If you have a large chance of a large remission and I have a small chance of a small remission, then to treat us as equals, on one plausible conception of equality, is to give us each an equal opportunity of having what is, en effect, our only chance of our life continuing, whatever chance that is. For if those with the better chance are always to be preferred this inevitably creates an aristocracy of the fortunate. Now this might be consistent with equal justice or rights for citizens, if fortune has no favourites. However, it is not only 'commonsense' that knows that some people are born lucky. Interestingly, recent advances in genetics and in particular in genome analysis have confirmed commonsense and made this point even more obvious and even more urgent. We have always known that individuals are individual, and that each persons' life chances, whether allotted by nature, nurture or circumstances are inevitably and necessarily different. What has changed is our capacity to acquire foreknowledge of what these chances are, or are likely to be. For not only does each illness or injury have its own prognosis, but each individual, from the identification of its genome, will have its own prognosis. And increasingly these prognoses will be know, actually or potentially. If we are to allot opportunities for health care according to prognosis it would be irrational and possibly self-defeating to confine that prognosis to a particular illness or injury. For the genes may tell us that although the chances of treatment for this condition are good, the ultimate chances of survival of this individual are poor. Consistency and rigour in prioritising on the basis of prognosis will imply massive information gathering, storage, retrieval and availability on a whole range of features which, additionally to genome analysis, and include
1
While there are many theories of justice and many attempts at justifying it basic tenets all (well all that matter) are alike in upholding some version of this principal.
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lifestyle, environment, personal preferences, 'compliance' and many other features.
sexuality,
gender,
Even if we felt there were good moral and political reasons to prioritise on the basis of prognosis, the practical problems of gathering all the necessary information, and the political problems of permitting its gathering, storage and retrieval should give us pause1.
This paper is a much abbreviated version of the paper entitled "What is the Good of Health Care" which was published in Bioethics in August 1996.
I elaborate on this point in my "Could we hold people responsible for their own adverse health?" in The Journal of Contemporary Health Law and Policy Voi. 1 1996. 100-106
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Expert Meetings Consensus Conferences and Expert Meetings in Bioethics Research Alastair V. Campbell, Otago Medical School, Dunedin
Introduction Bioethics as a discipline surfers from a lack of clarity about its sources of authority or verification. Whatever the uncertainties, it would be widely agreed that bioethics research is best advanced when several disciplinary perspectives are combined, with no single one (be it philosophy, theology, law or any of the sciences) being regarded as normative. Thus when new issues arise which require ethical and perhaps legislative guidelines it is very common to assemble a group of scholars from a range of disciplines to produce a report. This I referto as the "expert meeting". An alternative approach is the "consensus conference". Here different "stockholder' groups are assembled, divergent viewpoints are examined, and a panel is given the task of devising some kind of consensus statement, which identifies areas of agreement between the various parties. Each of these approaches has value in ensuring adequately informed discussion of an emergent issue. The aim is to get the most up to date factual information and at the same time to do justice to a wide spectrum of ethical opinion. However, I shall argue in this paper that the problem of "expertise" in Bioethics has not been solved, and that genuine consultation with the community will reveal that those who pursue Bioethics as a scholarly discipline frequently fail to perceive the relativity and narrowness of their own value assumptions. An Example: Ethical Guidelines on Human Gene Research To illustrate these problems I shall take an example from a recent attempt in New Zealand to devise acceptable guidelines for the use of human genes in research and therapy. This is of course one of the major issues of our time, and many bodies, both national and transnational, are seeking to define the appropriate ethical parameters. The drive for specific
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New Zealand guidelines arose from two sources: 1) the Ministry for the Environment had become aware that its monitoring role in relation to the production and field release of genetically modified organisms (Gloss) probably did not extend to the manipulation or use of human genetic material and that their guidelines were inadequate for such an extension; 2)at the same time the Health Research Council was aware of upcoming research projects using human genetic material which would require ethical appraisal. But the local research ethics committees, acting on behalf of the Council did not regard themselves as properly equipped to deal with such protocols. Therefore a working party was set up jointly by these two government agencies, and given the task of defining processes for ethical scrutiny and of preparing relevant guidelines. It is not the purpose of this paper to discuss the details of the report which emerged from this joint working party. (For the full text of the Report see Health Research Council 1996) Rather, I want to scrutinise the notion of "expert" which determined the membership of this group, and then to describe what happened when a quite different method - a consensus development conference - was organised by the Health Research Council on the same topic. The working party had six members: three were scientists (one a medical doctor specialising in medical genetics; one a researcher in human genetic manipulation ; the third a researcher in genetic manipulation of nonhuman species, using human gene copies). The other three members were: a social scientist who specialised in risk assessment; a bioethicist (the author); and an administrator from the Ministry of Health. Also present were representatives of the Health Research Council and the Ministry for the Environment. Despite the strong beliefs among Maori (the indigenous people of New Zealand) about genealogical matters, there was no Maori member, but a section on the Maori approach to these issues was commissioned from a Maori'lawyer who had specialised in this area. Were the meetings of this working party "expert meetings"? Certainly the scientists present were experts in their respective fields. One could also argue that the social scientist had the expertise to devise guidelines related to risks, and that I was an expert in analysing the ethical issues and describing the range of ethical debate on issues like gene therapy, the uses of human genes in other species, and the patenting of GMOs. Other members of the group were experts in current legislation and guidelines, and expertise in Maori issues was gained by commissioning a chapter. But what do these various types of expertise amount to in aggregate? Did the group possess some kind of collective expertise? This seems to me an unlikely proposition. At several points the group struck questions for which there was no unequivocal answer. Examples of these are: whether a copy of a human gene carries the same ethical significance as the original; whether any admixture of human and nonhuman genetic material is acceptable, and if so where the boundary of acceptability lies; whether germline gene therapy is in principle unethical, or only too risky and uncertain to contemplate at the present time; whether ownership of genetic
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material is vested in an individual or an ethnic group, and whether patenting of such material could ever be contemplated. Despite these unresolved points, however, the group did issue guidelines for ethical appraisal, which focused mainly on the issues of scientific viability of any project and the assessment of any risks it might entail. The guidelines made no attempt to deal with the patenting controversy, and the scope of the guidelines was restricted to human genes used in humans (thus bypassing the inter-species controversy). In interpreting its task in this way the group implicitly rejected the notion that it had any expertise in resolving contentious moral issues. Yet even this relatively cautious approach proved to be inadequate in light of the subsequent consensus development conference, which was held under the provocative title; "Whose genes are they anyway?" Over two hundred people attended this conference, and many different stockholder groups were represented, including the families of people with inherited conditions, Maori and Pacific Island groups, a large number of research scientists and medical geneticists, representatives from various government departments, from the office of the Privacy Commissioner, from the insurance industry and from the employers' federation. Of the numerous divergences of opinion which emerged from this conference, perhaps the most striking was the difference in the world views of the scientists and families of affected people on the one hand, and the world views of the Maori, Pacific Island and other indigenous peoples on the other. Much of this focused on distrust of the Human Genome Diversity Project, but more fundamentally the whole orientation and value frame of Western science was challenged by many indigenous speakers. It quickly became evident that the "expertise" assumed by the 'Working Party, with its 50% scientific membership, carried little authority with several stockholder groups. At issue in the consensus conference was the philosophy of Western science, and soon the scientists and philosophers present found it necessary to "caucus" in order to articulate why they believed scientific knowledge was valuable and what both the strengths and limitations of such an approach to knowing the world were. Thus in this larger conference fundamental epistemologica! questions had to be faced up to - a possibility never contemplated by the "expert group". It also became obvious that a major deficiency in the smaller "expert" group was its unrepresentative nature. It was not adequate merely to commission a chapter on indigenous issues, rather than allowing the challenge from that culture to run through the whole report, nor was it appropriate for the group to suppose that the language which it shared, across the disciplines of science, philosophy and law, was somehow neutral or value free. It follows that "expert reports" must be viewed with considerable caution. We may regard them as the starting points for discussion of emergent issues in Bioethics, but to suppose that they will provide an objective and fully adequate answer to the dilemmas we face with the rapid advances of science, is both naive and dangerous. It could be argued that Bioethics has been in grave danger of trying to assume the mantle of science in order to gain power and credibility and in view of the evident
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hazards of "expertise" in ethics, we would be better to drop this approach altogether. How to Consult? However, it would also be a mistake to suppose that the consensus development style of meeting, with its emphasis on controversy and its identification of "stockholder groups" will take us to a better solution. Clearly this approach does help to highlight areas of controversy and it also encourages people to identify their reference groups and try to articulate their shared values. (The pulling together of the scientists and philosophers caused by the confrontations in the conference described is a fascinating example of how we may all need a "caucus" at times, however "rational" we suppose our views are.) But this style of consultation is also caught up in an adversarial style which makes progress in terms of practical solutions difficult to achieve. Thus a "consensus statement" will often be very hard to write, and may in the end be merely a rather dull statement of a lowest common denominator, or may be, in effect, merely a redescription of irreconcilable viewpoints. (See the report of the consensus development conference described above (Health Research Council 1995).) A third possible approach is one where we encourage people to develop solutions to specific dilemmas in a workshop setting and then to reflect on the principles which have influenced their specific solutions. I have not had experience of this workshop approach in the field of genetics, but I have used it extensively to explore with selected community groups the dilemmas of the rationing of scarce health care resources. I have reported this more fully elsewhere (Campbell 1994). Here I shall merely allude to the finding from this style of consultation that quite different practical solutions will be found to dilemmas depending on what are the dominant values of the specific group seeking a solution. In this series of workshops groups had the option of favouring the younger a fitter members of a group in order to ensure the survival of some, or seeking to protect the lives of all, including the frail elderly, at the risk that none would survive. The outcome of these workshops depended on how highly the elderly are rated in a culture. If an old person is needed for one's spiritual wellbeing, especially when disaster looms, then death with them present at the end is preferable to a gamble which might save young lives, but would deprive these young people of the elder presence. The whole trend of Western economics of health care is at cross purposes with such a value system. The assessment of quality that might help us calculate QALYs is knocked askew by the spiritual loading given to the elderly. We can easily predict that a culture which sees ancestors and genetic inheritance to be a fundamental aspect of identity, the "scientific" approach to genetic manipulation will carry quite inaccurate value loadings.
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Conclusions What conclusion might we draw from this? At first it might seem that we are lost in a see of cultural relativity. Yet this is not inevitable. The problem for Bioethics is that it needs to hear the diversity of voices in any modern society, and not to suppose that somehow those who are closest to the culture of technological applications of science in a profit driven economy are closest to moral reality. But the fact we need to hear these diverse voices does not mean that we abandon the quest for shared moral commitments. Potentially, I think the workshop style of dealing with diversity is the most promising. The "expert meeting" has its uses, so long as we see the dangerous arrogance implicit in the description, and regard the findings of such groups as the starting off points for debate in the wider society. The consensus conference is a good way of welcoming a wide range of divergent viewpoints and of encouraging people to see where agreement is possible despite their diversity and (often) mutual suspicion and misunderstanding. But eventually a well designed workshop which put a smaller group of people together to seek solutions to a focused problem is the best way forward. In our culturally diverse society, we are not in fact part of a single cultural group, nor are we stockholders in only one "company", as it were. When we try to work together on a specific problem that demands some solution, we will find parts of ourselves in the other , and we will be forced accept that we too may have to change to find a way that we can all live together. One of the most dramatic moments in the consensus conference was when a Maori person stood up to distance herself from the strong Maori opposition to modern genetics. She saw herself as a Maori, but also as a member of a family group with an inherited disorder. She had to decide which part of herself should be heard. Such experiences would be important for us all. We realise then that there are no experts in ethics, only a puzzling mixture of beliefs, hopes and dangers, which we must solve somehow. The solution will perhaps be found when concretely we seek to co-operate with so called "ordinary" members of society in shared projects, and do not hide ourselves in a safe enclave of fellow "experts".
References Campbell A.V. (1994): Defining Core Health Hervices: The New Zealand Experience. Bioethics, 9:3/4:252. Health Research Council (1995): Whose Genes Are They Anyway? Report of A Consensus Development Conference. Available from Health Research Council, PO Box 5541, Wellesley Street, Auckland, New Zealand.
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Health Research Council (1996): Report of Working Party on Clinical and Research Use of Human Genes. Available from Health Research Council, PO Box 5541, Wellesley Street, Auckland, New Zealand.
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Strategies
Strategies for Bioethics Research in the U.S. Daniel Wikler, University of Wisconsin, USA
Twenty years ago, a mention of "bioethics research" would draw puzzled looks in academic and governmental circles. Both the word "bioethics" and the subject it denotes were largely unfamiliar. Moreover, at least in Anglophone countries, emotivist and other noncognitivist theories of morality had convinced many philosophers and scientists that reasoning and theories had a limited role to play in moral evaluation. Since that time, bioethics research has thrived, spurred both by society's need for thoughtfulresponsesto technical and social change in health care, and also by gradual acceptance by academics of the legitimacy of "applied ethics". Thus, even though the European Union is one of the (unfortunately) rare national or regional authorities to initiate a broad program of research grants in bioethics, there is little dispute that bioethics is a suitable subject for public support. There is no reason to doubt that this trend will continue.
Methods and Theories in Bioethics The organisers of this conference have assigned to me the topic of research strategies in the United States and this heading may suggest that Americans have come across some methods or theories which have not yet occurred to other investigators. This is not so. Nor, in my view, could it be so, since (again, speaking my personal point of view) bioethics in general has no distinctive strategies, methods, or theories. Bioethics is a set of issues rather than a discipline. Those who do research in bioethics bring to their studies the methods and theories of their own disciplines, be they philosophy, law, economics and the other social sciences or any of the medical sciences; or they simply apply "common sense". The strategies and methods of bioethics are simply those of the contributing disciplines.
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Nor, I would argue, is there any distinctive theory in or of bioethics. The closest the field has to a theory is the well-known "Georgetown Mantra", the "four principles" approach of Beauchamp and Childress's book, "Principles of Bioethics". Useful as their principles may be for organising ideas and arguments in bioethical consultation and education, however, commentators have argued effectively against elevating them to the status of theory. The reason, very briefly, is that the principles are indeterminate and incomplete. They may be "valid" -that is, few would dispute them - but they do not select between contesting solutions to bioethical dilemmas. They are step ahead of a "principle" which merely told us to "do what is right"; but a proper theory would be many more steps ahead. To be sure, any number of genuine theories exist in moral philosophy and in theology1, and these have been used as the foundation for bioethical arguments in an entirely appropriate way. Nevertheless, none of these counts, in my view, as the theory of bioethics. The reason is that they are too numerous. Those of us who work in bioethics cannot point to any consensus on these foundations of morality. Utilitarians disagree with contractarians, who disagree in turn on followers of natural law, at least where these theories contradict one other. Bioethicists who are utilitarians (of one kind or another) can and do provide utilitarian arguments on topics raging from euthanasia to resource allocation, and so do bioethicists of the other persuasions. But their conclusions are, strictly speaking, of the greatest interest primarily to audiences share their foundational views: utilitarians speaking to utilitarians, for example, who of course will be the ones most concerned with and convinced by utilitarian arguments. There is nothing amiss about these bioethical arguments, but in general bioethics is addressed not to theoreticians but to a wider audience: clinician, policy makers, or the general public. With a few exceptions, people in these latter audiences have not come to a judgement on which moral theory is valid. They may never have encountered some, or any, of these theories, nor will they have pondered the range of theories with an eye toward choosing between them on the grounds of intellectual soundness2. The bioethicist who argues from say, natural law principles for a certain policy or action in bioethics can, in all intellectual candour, tell the 1 Wikler, Daniel What Has Bioethics To Offer Health Policy?, which appeared in the Milbank Quarterly 69(2), 1991, pp. 233-251.
2 Of course, many people do accept one of these theories, either because they trave been socialized to do so, or have been inclined to do so by teaching, experience, personality, or other inf luence.
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audience that this is what seems to follow from these principles, but there will not be time to make a case for the principles themselves. If scholars of the highest reputation , who spend their working lives developing and refining these theories, are sharply divided on which theory it is most reasonable to hold, the audience for bioethicists will not do much better. There is little room, therefore, for bioethicists to introduce the kind of ground-up, root-and-branch arguments which it is most satisfying to base our policies and actions on. AS I have argued elsewhere1, bioethics is better suited to contributions which do not require a theoretical basis. Among these are: 1. Clarification Bioethicists can point out the ambiguities in concepts and claims encountered in bioethical disputes. Indeed, the training many bioethicists have had, in both philosophy and in law, often makes them very good at this. 2. Logic One need not offer a positive view on an issue to point out the flaws in the reasoning of others, be these inconsistencies, non sequiturs, or reliance on unstated premises. 3. Argument from Shared Premises On some occasions bioethicists will enter into argument with a group which share some nontrivial premises from which important policy or clinical implications flow. For example, the philosopher Will Kymlicka, working as a consultant for a Canadian bioethics commission, maintained that the commission could assume the acceptance by its public provision of services as opposed to profit-seeking. These commitments are not universal indeed, they are widely disputed just south of the Canadian border but Kymlicka detected a Canadian consensus on these principles and argued that conclusions of arguments based on them would be of interest to Canadians generally2. The "modest theories" proposed by Dr. van Delden in this volume are similar. In some cases bioethicists everywhere are entitled to assume a consensus on mid-level principles. That is the appeal, I believe, of 1
Wikler, Daniel What Has Bioethics To Offer Health Policy? Which appeared in the Milbank Quarterly 69 (2), 1991, pp. 233-251. 2
Kymlicka, W., 1992. Moral Philosophy and Public Policy: The Case of New Reproductive Technologies. Bioethics, Vol. 7, #1, January 1993.
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Beauchamp and Childress's principles, and it undergirds the international acceptance of human rights. But the bioethical problems which vex us rarely can be settled on the basis of an appeal to these rights and principles, which is why they vex us, and the premises which are required to settle the outcome are often not so widely accepted. None of this, of course, is meant to diminish the potential contribution of bioethics research. That body of research has already proven its value to the public, not least in its supporting role in the many important public commissions and advisory bodies which have contributed to enlightened policy making over the past two decades. Empirical work, whether in the form of observation, surveys, or archival investigation, can and has identified key premises of bioethical arguments which upon study turned out be false or outmoded. Studies of a more abstract nature have clarified numerous conundrums in human subjects research and many other fields. And bioethical argumentation has helped to crystallise the issue in dispute in such controversies as surrogate motherhood and the definition of death, even if important differences of opinion remain. Some recent U.S. Bioethics Research Initiatives Though I cannot report bioethics strategies, methods, or theories arising in the United States (since I do not find these anywhere), there have been some new approaches to bioethics investigation which are relatively unusual and which might be of particular interest to a European readership. I will briefly mention three lines of research which I believe to be of particular importance, first and foremost in the U.S. context, but eventually elsewhere. Ethics in Privatised Medicine In the wake of the failure of our President to enact a national health program, the American health care system has undergone and unexpected and rapid transition from a mixed public and private arrangement of feefor-service doctors and not for profit hospitals to a market dominated by a decreasing number of very large profit-seeking corporations offering prepaid health plans. These changes have affected virtually the whole of medicine, and hence almost all of bioethics, rendering much earlier work marginal or obsolete. Nearly every aspect of the doctor-patient relationship
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is potentially altered by these changes in the financing and organisation of medicine. Bioethicists have turned their attention to these new issues1. To take but one example: the doctrine of informed consent has been applied primarily to interventions which the doctor proposes to practice on the patient. In pre-paid care, the doctor has incentives not to offer needed care. Does the doctrines of informed consent require that the doctor tell the patient what kind of care the doctor is not offering, along with the risks, benefits, and alternatives to doing so? Unfortunately, some American health care corporations require physicians to sign contracts which require them not to disclose such information to patients. Doctors may not like these so-called "gag orders", but they may have no alternative if they wish to continue in the practice of medicine. What advice can they find from bioethicists? Dilemmas such as these seem to suggest a gradual "proletarianization" of American medicine, in which physicians are drawn or forced out of independent private practice into very large, national, investor-owned medical corporations. With their integration into these business may come a loss of decision-making authority, and hence their ability to act as advocates for their patients. Who, then, would take their places as advocates? Some observers have suggested that the new patient advocates will be executives of the companies which hire workers and pay for their health insurance. These executives buy insurance on behalf of their employees and can hire experts to judge which insurance companies and health corporations offer the best quality medical care. But will bioethics now turn its voice to business executives in addition to doctors?2 And do the interests of workers and their employers coincide enough to make this story at all plausible? Karl Marx would not approve. Empirical Evaluations of Bioethics As bioethics has been embraced by mainstream medicine, becoming almost another medical speciality, its demands are treated less as protests against standard medical practice (as they were often perceived two decades ago) than as coll茅gial consultations which doctors seek out spontaneously. Bioethicists, for example, cooperated with surgeons and neurologists in formulating a new definition of death; today, nearly all 1
Ezekiel J. Emanuel and Nancy N. Dubler. Preserviny the Physician-Patient Relationship in the Era of Managed Care. JAMA 273 (4), January 25, 1995, 323329; Council on Ethical and Judicial Affairs, American Medical Association, Ethical Issues in Managed Care, loc.c/f.. 2
Wendy K. Hariner, Business vs. Medical Ethics: Conflicting Standards for Managed Care. Journal of Law, Medicine, & Ethics 23, 1995, pp. 236-46.
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Americans will be judged dead, when they die, by this new definition. Where once patients held protests against doctors who refused to stop treating patients at the end of life, today laws exist which provide patients with the authority to reject resuscitation and to appoint others to make decisions on their behalf when they become incompetent, even including the cessation of life-supporting therapy. Each of these steps (and there are many more) was declared a moral necessity by bioethicists, who then cooperated in their formulation. But did they accomplish their goals? A number of studies have been undertaken to measure the results1. Unfortunately, the results have been bleak. A study of physicians and nurses who specialised in organ transplantation, and who thereby have the job of explaining to families of brain-dead patients that their breathing, heart beating loved ones are nevertheless dead, found that these specialists could not explain to researchers why brain death had been accepted as a definition of death. A large scale study of advance directives in end-of-life decision found that in the majority of cases advance directives which had been duly signed by patients were unknown to the doctors treating them, and that even when known they were often ignored. Though these studies have not provided much by way of comfort for those bioethicists who hope to make their mark on clinical practice, the involvement in these studies of social scientists and others with empirical research skills may lead to better-designed interventions in the future. Multiculturalism Is bioethics universal? In international symposia such as this one, it is now commonplace to encounter debates over whether we should expect there to emerge a single bioethics for all mankind, or distinctive sets of ethical standards within each individual culture. But American bioethicists do not have to travel abroad to hear these arguments. Our country is large and diverse enough to prompt the debate within our own borders. A recent paper in the Journal of the American Medical Association, for example, reported on the encounter between physicians trained in
1
SUPPORT Principal Investigators, A Controlled Trial to Improve Care for Seriously III Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatement (SUPPORT). JAMA 274 (100), November 22/29, 1995, 1591-1598. Also: Kenneth Covinsky et al, The Impact of Serious Illness on Patients, Families. JAMA 272 (23), December 21 1994, 18391844; Ellen Moskowitz and James Nelson, eds., Dying Well in the Hospital: The Lessons of SUPPORT. Hastings Center Report 25(6), November-December 1995 , S1-S36.
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"mainstream" bioethics and their patients on a Navajo Indian reservation1. The physicians, who had learned to respect patients rights and had been taught to deal frankly and squarely with question about death, tried to engage their patients in conversations about what treatment they wanted in the last stages of life. The doctors asked these questions while the patients were fully competent and not near death, for these conversations often cannot be held later in the course of disease. According to the authors of the JAMA study, however, these physicians acted unethically in the view of their patients when they raised these subjects. The Navajos, the investigators explain, believe that talking of terminal illness and death makes these events more likely; and their ethics rule out conversations on these topics. Navajo culture, in their view, does not permit discussion of do-not-resuscitate orders and the like. The duty of physicians, they believed, was to learn about, respect, and be governed by the ethics of their patients, regardless of what the doctors had been taught in medical school bioethics classes. America is in the midst of a vigorous debate over multiculturalism and the existence or non-existence of universal norms of conduct. Every American has many "identities" a person might be a women, a Navajo, a teenager, a worker and to each of these may be imputed a culture and an ethics. We are just beginning to ask if each of these "identities" has a distinctive bioethics, and how doctors should behave if they do. Conclusion Do American bioethicists have new research strategies and methods to offer their colleagues abroad? I have argued that bioethics, American or otherwise, does not have a theory and lacks any distinctive methods. Our subject is an amalgam of a number of disciplines, each of which uses its own set of scholarly tools. Perhaps it is fortunate, in a subject which is close to the interface between doctors and patient, that the diversity of methods and ideas in bioethics which can even purport to serve as a guide to all of it. At most, we from the United States can point to new topics of investigation, new moral concerns and preoccupations, and new uses of the research strategies of other fields. I, for one, am neither apologetic nor embarrassed to respond to our hosts invitation to discuss American methods in bioethics by denying that these exist. It certainly undercuts any fears about American cultural imperialism. The misimpression that there is something close to an "official" bioethical theory has been an unfortunate one, in my experience. Physicians and bioethicists alike outside the United States have been led (misled, I think) to formulate their own ideas in reaction to what they think is 1
Carrese, Joseph Α., and Lorna A. Rhodes, Ph.D. Western Bioethics on the Navajo Reservation: Benefit or Harm? JAMA 274(10), September 13, 1995, 826829.
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lhe" American view, an approach which may not be the most creative or intellectually satisfying. If we can agree that bioethicists in all lands have little alternative but to approach these questions of life and death with common and whatever intellectual tools may lie close to hand, we will better appreciate what we have in common as colleagues.
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Is Cross-C uitu ra I Bioethics the Next Challenge? Raffaele Bracalenti, Psychoanalytic Institute for Social Research, Rome
At this meeting as well it was pointed out that Bioethics should be seen as a complex body of elaborations and reflections providing flexible and differentiated responses to practical problems where moral conflicts are involved, rather than being a coded and regulatory body of knowledge built up according to a precise order of values. Bioethics should therefore present itself as a multidisciplinary theoretical system constantly hovering between the building up of fundamentals and a practical and procedural attitude: in the best of cases, as Gindro states, as a bridge between science and philosophy, in the worst as a weary to-and-fro between paper work, namely optimising the informed consent forms, and the formulation of hazy theories aimed at justifying, at times confirming and at times regulating, what happens in practice in the marketplace. There are no doubts however, that bioethics is a profoundly lay area of knowledge, lay in the sense of not being founded in metaphysics in defence of a few pre-set values. Hence multidisciplinarity is matched with multiculturalism and with the pluralism of the values at play. Indeed, it is not by chance that bioethics should be so deeply influenced by, and in certain respects it can be deemed to be an expression of, the north-American culture - that is to say of a profoundly multiethnic society. We are not discussing whether the United States are a "melting pot" or a "salad bowl", namely what is the interaction amongst the various cultures, what real possibilities the ethnic components have, but the co-existence of different cultures and hence the effort of giving to each culture a space in which they can express themselves - or at least survive; this, according to several observers, is the very essence of the American juridical and political system. The regulatory effort underlying the search for democratic coexistence is in turn the "culture medium" in which bioethics can grow. I am not going to go into such aspects as the debate between cultural relativism and universalism nor into the impact that such themes have on the bioethics discussion; there are no doubts that the solution to this insoluble dilemma is a challenge both for Bioethics and for the political systems, in that the former has to face the conflicts resulting from the explosion of biotechologies, and the latter have to face the problems arising from the imposing wave of migratory flows ( the term migratory flow may be taken to include also the huge flow of information from and to all over the world).
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Some "European" Reflections on Diversity and Multiculturalism There are signs that larger and larger sections of European culture are beginning to consider the cult of multiculturalism and diversity with anguish if not with downright suspicion. The fundamental theoretical node that our society is having to face nowadays is that of better understanding the role and value to be attributed to diversity. It cannot be ignored, for instance, that most of the more recent work done above all in France and in Italy, on such themes as racism and xenophobia, have highlighted with sufficient clarity that there is not a single, stable and permanent type of racism: rejecting he who is different, defending one's territory and culture with violence have taken on different forms and have been theorised differently in the various historic periods. Biological racism was an attempt at conceptualising and at working out a theoretical definition which can be dated back to the late 17th and early 18th centuries and reached its theoretical peak in the late 19th and early 20th centuries (and indeed, Wiewiorka points out that the very term racism was coined in the early 20th century). Ultimately there is a Zeitgeist, a sort of social construction - some might call it collective imagination, we prefer the term social unconscious - others yet may prefer to make reference to a common approach of the international scientific community, that creates the scenario, the fertile ground in which human beings live and move, which defines the conceptual frameworks, the paradigms of judgment, the behavioural stereotypes through which some basic psychological and sociobiological mechanisms are expressed. The fear of what is new, a reaction of defence vis-Ă -vis someone who steps into our space, besides the inevitable curiosity that a foreigner raises, represents a sort of constant in social relations; but the cultural processings through which such emotions are expressed, the individual and collective rationalisations through which they manifest themselves change in dependence of the Zeitgeist mentioned above, that is to say they change in dependence of precise historic and cultural determinants. This is why it is extremely important, according to the literature on the topic, to refer to the effects of the new way of interpreting diversity. We were saying earlier that the so-called biological racism no longer holds, but it has given way to a new form of racism which Taguieff with great insight defines as being "differentialist". There is a refusal of the other resulting from the emphasis placed on cultural, religious and somatic differences. The time-consuming and toilsome work done by 20th century anthropology to enhance diversity seems to have produced a diffused and dangerous rejection of anything that is different and has given an ideological and cultural background to the defence of native cultures and to the fuelling ethnic conflicts. From our viewpoint this means that today the social and cultural space within which racism, xenophobia, intolerance, etc. are constructed and de-constructed overlaps with the very idea of diversity, with the cultural and pedagogical use that is made of it. And this is the
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ground where the game of acceptance, integration or marginalization is played. Indeed, it is no longer sufficient to either simplistically accept any diversity without criticism, orto demonize cultural differences. As said earlier, the scenario has changed: the defence and promotion of diversities opens up new, significant risks. It appears to have lost the sole significance which appeared to be conceptually sound: that of being the instrument for building up an anti-racist culture. But the enhancement and promotion of diversities instead, not only seems to produce opposite effects, but the very theoretical bases underlying this effort appear to be very fragile. Which diversities should be promoted and which should not? Who is eligible for defending diversities? Wouldn't it be more sensible, instead, to promote what is shared and what can be shared? Isn't there a risk of promoting stereotypes which in a sort of vicious circle are self-strengthened and self-validated? Isn't there a risk of crushing the other in a diversity that perhaps he refuses and against which he is fighting? "The conflicts between different sets of values that the increasingly frequent and broader encounters among different cultures are bringing to light, put before us complex but unavoidable problems, such as the way in which such encounters are to take place. The very terms "assimilation", "integration", "adjustment" which have been used to define such encounters appear to be obsolete and inadequate. And so projects envisaging future multiethnic societies where multiple cultures can coexist without attacking and devouring one another are utopian and overambitious when they are not based on bad-faith and historic ignorance". (M. Callari Galli, Bioetica e antropologia culturale, in M. Callan Galli (edited by), Itinerari Bioetici, Firenze 1994). This pessimistic view afforded by Callari Galli could find an answer in that regulatory vis, aimed at setting rules for the management of conflicts, something at which the US culture is working industriously. But there is criticism also against this: the very expression, "cult of diversity", is taken from a piece of work by Tzvetan Todorov which was published in Esprit last June. In this very interesting essay, Todorov seeks to demonstrate - and succeeds in doing so in my opinion - how the mechanisms produced by the American society tend to reduce and mortify the principle of autonomy of the individual which represents one of the basic principles of Bioethics. Indeed, according to Todorov the habit of exercising self-pity, of blaming others, and the very quota-based mechanism typical of multi-ethnic societies subtract from the individual's decision-making capacity "The autonomy of individuals, a fundamental democratic value, is being undermined, and it takes a lot of credulity, or very shrewd and cunning demagogy, to have this attack against democracy be mistaken for defence of democracy".
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And with regard to the risks, which put on a par Taguieffs differentialist racism with the US quota policy, Todorov uses a term that was very dear to Taguieff, "mixophobia": indeed, he points out that for instance it is common practice that transracial adoptions are allowed only when all other options have failed, so as to avoid a sort of cultural genocide, in which a black child is brought up with the culture of the whites. Bioethics and Cross-cultural Conflicts Now, going back to the topic of my paper, namely the interrelationship between bioethics and cross-cultural conflicts, there are two remarks that need to be made. The first concerns what conduct a physician should take vis-Ă -vis patients belonging to different cultures. In our opinion when an individual seeks medical help, in some respects he has already been culturally assimilated; the importance attributed to scientific progress and, within this sphere, to medical progress which encompasses most of the advances achieved in other fields - life sciences - clearly tells us that the adoption of the western therapeutic model means having already acquired and absorbed western culture. As already pointed out, infibulation carried out in a hospital is totally different from infibulation carried out according to traditional practices: here the choice of hospitalisation is evidence of the fact that a conclusive cultural separation, which is the first form of assimilation, has occurred. On the other hand the symbolic and cultural importance of anything which has to do with the body, whether the approach be medical or magic, is well known in anthropology studies. Given this fundamental assumption, there derives in my view that here there has been a shift from a multicultural prospect to an ethnocentric prospect, so to speak: as Leslie Blackhall and the others in the essay suggested by Alex Capron seem to assume, it is no longer a question of having recourse to different ethical "sets" of values depending on the ethnic group one is confronted with, but rather to recognise in the basic ethnic set, constitutive of Western medical culture, the willingness to listen to the patient and the desire, to show respect for the dignity of his patients, as Gindro points out. What is completely different is the issue of exporting health and body care-related values, conveyed by the ever-increasing flow of information and of individuals that represent the novelty of present-day world, without providing the economic and development conditions and background which are essential for being able to adopt those values. Immigrants coming to our countries bring with them a diversity which is just one of the many diversities taken into account in the dialectic process that we indulge in: it is not all that different from the diversity of gays, the handicapped, and so on.
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What is different instead, is the moral issue arising from the continuous exportation of health management models to countries where the economic conditions are such that the imported models will never become feasible. The destructive effect that the latter will have on the preexisting healing practices is devastating because they will be wiped out with nothing being offered in their stead. I am aware of the fact that this is not a new issue: anthropologists had already raised this type of problem in the Thirties and noticing that it still exists is not at all reassuring. At times, when thinking about the tragic organ trade involving the poorer countries, I cannot help noticing that this is merely a perpetuation of what I used to hear during the Sixties from some peasants living in the poorer areas of Southern Italy namely that they would sell a kidney to have their children treated in hospital.
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Bioethics: the development of international standard Sjef Gevers, Institute of Social Medicine University of Amsterdam, Amsterdam
Introduction I have been asked to speak about 'bioethics and international legislation'. This is an interesting and important subject, if only because there would seem to be a growing need for common principles and rules in bioethical matters. It is also a complicated subject, because it is intimately related to several wider issues, like for example the relationship between bioethics and public policy, and the role of the law in regulating new medical technologies. It is impossible to deal thoroughly with these preliminary issues before discussing the main questions, i.e.: the need for international standards, the problems associated with the development of legal standards, and the contribution of 'bioethics' as a discipline to this process. I will therefore directly address the latter questions, and touch upon the underlying, more general issues where necessary. Before doing so, however, I would like to say a few words on the concept 'bioethics' on the one hand, and 'international legislation' on the other. To start with the last one: at the international level, there is strictly speaking no machinery which is comparable to the legislative process at the national level. In some regions, there may be supra-national organisations with the power to lay down binding rules for their member-states, like the European Union; however, this is an exception rather than a rule. Therefore, I will not speak about international 'legislation', but about "standards". In practice, most of the standards developed internationally are guidelines, recommendations, declarations etc. From a strict legal point of view, they are not binding upon nations. Still they often are important, first of all because of their moral force; secondly because they may gain legal significance, for instance if they are transformed into national law by parliament or the courts. Binding international standards are primarily to be found in treaties; an example are the international conventions on human
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rights. Basically, international conventions are only binding on countries which have ratified them; even then proper mechanisms for enforcement may be lacking, so that in practice their moral authority may be as important as their legal status. My second remark concerns the term 'bioethics'. What does it include? According to the Constitution of the International Association of Bioethics, for instance, bioethics is 'the study of ethical, social, legal, philosophical and other related issues arising in health care and the biological sciences.' 1 like this definition because it is encompassing both in terms of disciplines and in terms of subject-matter. Does the study of bioethics as it actually takes place live up to the expectations raised by this definition? Not completely, it would seem. In the current bioethical literature, there is relatively much about the issues raised by the rapid development of the life sciences, and less about more traditional problems like the development of a just system of patient compensation in case of injury, privacy and confidentiality in health care, or the protection of mental patients, to mention just a few issues. This is certainly also shaping the public's perception of what bioethics is about. For practical reasons, I refer in this paper to bioethics in this more restricted sense, although in my opinion the 'mission' of bioethics should (continue to) be defined in wider terms The development of international standards. The last decade has seen the coming into existence of an increasing number of international standards relating to bioethical issues, most often in the form of non binding instruments such as recommendations and guidelines. Quite a few of these instruments have been elaborated at the regional rather than at the global level, and part of them are the result of self-regulation by non-governmental organisations, such as the World Medical Organisation or the Council for International Organisations of Medical Sciences (CIOMS). This body of standards is substantial and still growing. I will not enumerate all the organisations involved, let alone the texts they have produced, but only mention some domains where this process is conspicuous: genetics, artificial reproduction and embryo research, organ transplantation and biomedical research. If we look at human subject research, for example, in Europe we have to take into account at least four international documents (and more of them are in the making), viz. the Helsinki Declaration of the World Medical Association, the Council of Europe Recommendation concerning medical research on human beings (1990), the 1992 CIOMS guidelines on the same subject, and the Good Clinical Practice guidelines elaborated by the European Union. Since these instruments are diverging and competing,
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at least in some respects, they only partly coordinate national standards and do not completely satisfy the call for a common framework. This is one of the reasons why we should move, I believe, at least in some respects beyond declarations and recommendations, and adopt binding international law. Before dealing with legal instruments, first a few words about the background of these growing need for international standards. There are several reasons to explain it; the most important is, that the increased mobility of persons, ideas, capital etc. calls for international cooperation, also in the field of health care and medicine; at the same time, science has more and more become an international enterprise (Byk, 1993). One reason should be mentioned in particular, i.e. that many bioethical issues are related to the fundamental human values enshrined in international human rights instruments (Gevers, 1993). There is a growing recognition of human rights and bioethics as being intimately interlinked. An increasing number of authoritative statements (for instance the declaration adopted by the World Conference on Human Rights in Vienna, 1993; the CIOMS declaration of Ixtapa, 1994; the resolution on bioethics of the UN Human Rights Commission, 1995) call for international cooperation to ensure that the life sciences develop in a manner respectful of human rights. Some of these statements recommend drastic steps, like the resolution of the European ministers of justice (Istanbul, 1990) which calls for harmonisation - 'as much as possible' - of national laws to counter the potential threats to human rights posed by the biomedical sciences. Others are more modest and stress the need to develop an international corpus of common principles which respect diversity of culture, like the resolution of the recent Interparliamentary Conference in Madrid (1995) on human rights and bioethics. International instruments have various functions. They may be useful in harmonising existing law, or provide backing and guidance to the development of new national legislation. They may stimulate further debate, or codify an existing consensus. They may only have a symbolic meaning, or provide more or less effective legal safeguards against infringements of human rights. For most of these purposes, international standards need not be binding, but they are likely to perform better if they are. Sometimes adoption of new international law is indispensable. In my opinion, this holds in particular for human rights law: the progress in the biomedical sciences makes it imperative to elaborate existing human rights standards in order to make them better applicable to bioethical issues. This brings me to the difficulties associated with the development of international law in this field. If the efforts to elaborate international legal standards were directed at total harmonisation, they would be almost certainly bound to fail. As a
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matter of fact, the objective usually is less ambitious: the purpose is to develop a common framework which leaves room for - and often requires further and more specific measures. This further elaboration may then be completely left to individual countries, or there may be more specific international standards in the form of guidelines or recommendations. Even at the level of common principles, however, it is difficult enough to reach a sufficient degree of consensus. At least four problems will emerge if one tries to make an international legal instrument that lays down or further elaborates human rights standards. First, there is the well-known problem of whether there is room at all for universal principles given the social and cultural differences between but often also within - national states. From a legal point of view, radical cultural relativism can be criticised for three reasons (Heinze, 1994): human rights law draws its legitimacy from the distinctiveness of cultures; where disagreement about the meaning of specific rights exists, it takes place within a common normative framework which presupposes at least some degree of universality; in the final analysis, a denial of the possibility of human rights law would amount to a negation of all law. Nevertheless, sometimes it can be very difficult to accommodates the search for common principles with cross-cultural or cross-national variation (Christakis, 1992; Gรถstin, 1995). A second problem is what exactly should be laid down in international human rights standards: should this be restricted to the bare minimum, or should the standards be more progressive (Quintana, 1993)? A related question is, what the role is for the principle of subsidarity: should international law be strictly limited to what cannot be sufficiently addressed at the national level, or may it go further (Gillon, 1993)? The third problem has to do with the level of generality. To the extent that a principle is framed in more general terms, it will cover more cases; at the same time it will become less conclusive in deciding an particular situation. Since consensus often tends to be fragmentary, there is often the dilemma of either adopting only the more specific rules on which there is agreement, or moving beyond them to a higher level of generality. Finally, there is the problem of application. What machinery should be in place to enforce international standards and/or to interpret them when conflicts arise about their implications? Precisely because international standards are likely to be worded in general terms, there is a need of adjudicative institutions empowered to apply the standards to contested cases. Unfortunately, on this point international law (including human rights law) is only poorly developed. Let me now tum briefly to the present work of the Council of Europe on a draft Bioethics Convention (Council of Europe, 1994), which certainly is the single most important attempt at this moment to develop international legal standards concerning bioethics. This undertaking
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demonstrates very well the aforementioned problems in consensus on a text with direct legal significance.
reaching
First the existence of cross-national differences and the scope for consensus. The discussions on the draft convention show how difficult it is to reach agreement on a number of issues, like research on the embryo in vitro, or non-therapeutic interventions on incompetent patients. Lack of agreement on substantive issues can also result in ambiguity concerning basic concepts, like 'everyone' or 'human being'. The protection provided by the convention to human life before birth, for instance, depends to a large extent on how this concept will be interpreted at the national level. The drafting of the convention is complicated, of course, by the fact that on some bioethical issues there is not only divergence of opinion between countries, but first of all within them. Which issues should be addressed in the convention? In the draft-text some principles typically apply to regular health care (e.g. the provisions on professional standards, emergency situations, previously expressed wishes), others exclusively relate to recent developments in the life sciences (e.g. provisions on genetic testing). At the same time, the field of new biomedical technologies is only partly covered; for instance, principles concerning artificial procreation are conspicuously absent. On the other hand, the convention opens the possibility that such more specific domains may be dealt with in protocols to be elaborated at a laser stage. Another, related question is whether the convention should be the 'lowest common denominator1 or imply improvement of at least some of the existing laws and practices. On this point, the draft text would seem to steer the middle course; in many respects it reflects the opinions laid down in the international recommendations and declarations, adopted over the fast decade. This brings me to the next point: when incorporating these views in a legal document, one has to provide for legal complications. In the dilemma which I mentioned before - generality versus specificity - the text of the draft-convention moves on most points in the direction of generality (see for instance the provision on 'equitable access' to health care, or the general exceptions to the rights contained in the convention). This is quite understandable, but at the same time it makes it indispensable to provide for a reasonable degree of uniformity concerning the interpretation of the convention. On this fast point, unfortunately, it does not provide many safeguards. Whereas the European Convention on Human Rights enables every individual to address the European Court of Human Rights in the event of infringements of tris rights, the draft convention does not provide for an adjudicative institution. It only requires that, if so requested, a state which has ratified the convention furnishes an explanation of how effective
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Implementation is ensured. It is to be hoped, that in the future an authoritative body will emerge which can contribute to the further interpretation of the general provisions in the convention, also in order to make it a dynamic instrument. In spite of the unavoidable problems and limitations, efforts to elaborate human rights law with a view to the development in the biomedical sciences should continue. Therefore, the draft convention of the Council of Europe must be welcomed. Even if - which I do not hope - it would not achieve the status of an international treaty ratified by a growing number of countries, the attempt to elaborate such a document gives a strong impulse to the international, public and political discussion of bioethical issues. Role of bioethics as a discipline. I would like to end with a few remarks on the role of bioethics as a discipline in the process of international standard-setting. In one of the next presentations, Maurice de Wachter will address the question of whether public policy is saving the life of bioethics. My question is rather what bioethics can do to save the quality of public policy in the domain of biomedicine. It is obvious that bioethical analysis can be of great help in identifying the main issues, clarifying underlying assumptions and basic concepts, exploring possible approaches, indicating solutions which do justice to fundamental values etc. In my view, the (study of) bioethics not only can, but also should contribute substantially to the development of international standards, in the stage of informed discourse as well as in the stages of consensus-building and elaboration of standards. To do so, however, bioethicists should not only judge international standards from the Olympus of philosophical thought, but appreciate their social, political and legal importance. References Byk C. (1993): The European Convention on Bioethics. Med.Law, 12:507 Christakis N.A. (1992) : Ethics are local: engaging crosscultural variation in the ethics for clinical research. Soc.Sci.Med., 35:1079 Council of Europe (1994): Draft Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. Directorate of Legal Affairs, Strasbourg Gevers S. (1993): Use of genetic data, employment and insurance: an international perspective. Bioethics, 7:126
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Gillon R. (1993): Biomedical ethics in Europe - a need for the POBS? Jnl.Med.Eth., 19:3 Gรถstin L.O. (1995): Informed consent, cultural sensitivity, and respect for persons. JAMA, 274:844 Heinze E. (1994): Beyond parapraxes: right and wrong approaches to the universality of human rights law. Neth. Quart.Hum.Rights, 4:369 Quintana O. (1993): International bioethics? The role of the Council of Europe. Jnl.Med.Eth., 19:5
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Conclusion
Research in Medical Ethics and Ethics of Research in the European Union Alain Pompidou, UniversitĂŠ RenĂŠ Descartes, Paris
We are now entering the post-modern society. Within the framework of the European Union, it is the product of an unavoidable confrontation between experts, politicians and citizens. Research in biomedical ethics is justified by the risk of constraint of patients and by the threats to freedom of choice. The development of new biomedical technologies addresses both the very first stages of conception and also the terminal stages of life, not to mention the progress made in biomedical instrumentation as well as in the uses of products and tissues of human origin. New knowledge thus leads to new abilities and creates new risks. New biomedical technologies lead to new forms of choice for the individual, his family and the society in which he lives. Characterisation of multifactorial diseases, and in particular of the genes predisposing to diseases, is leading us away from classical preventive medicine towards a so called "predictive" medicine which threatens the uncertain nature of the pathological risk. The dangers of eugenic practices, or the temptations of medicine guided by personal convenience justify research on medical ethics. This way of thinking ethically is different from personal or professional morality. It is a true morality of actions: Such an ethical code needs to reconcile both one's personal choice and the general interest. The field of Application of this research is very wide since it aims to protect the human being from conception to death. This is based upon developing responsible attitudes not only by individuals but also by their families or social groups. Such research must assess the risks in the light of available knowledge, but it must also try to anticipate potential risks, in particular the so-called "indirect" risks whose consequences are not immediately obvious. This kind of research is even more complex in the cases where our knowledge is imprecise or insufficient. It is therefore important to try to assess such risks whilst relying on two principles:
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- the principle of caution when seeking to prove the non-harmful nature of a new technology; - the principle of learning from experience, It is too often neglected because of me contradictory attitudes of experts; the "enthusiasts" pushing on too quickly and the "critics" putting obstacles in the way ahead. Thanks to an objective analysis, learning from experience allows the achievement of a proper balance between both attitudes. This shows the need not only for a very high standard of training of qualified persons in the research field but also for proper education and training of the public. In order to ensure a true freedom of choice. This will therefore allow a greater acceptance of technical and scientific progress together with its constraints. This implies the need to develop an Ombudsman function among the politicians. Today the political decision-maker have a major intermediate role between the experts and the lay people. Although the capacity to evaluate risk influences the degree of acceptances ofthat risk, it is nevertheless important to take account of a certain amount of subjectivity in the assessment of biomedical risk. However, personal decision-making is only acceptable in so far as it does not threaten the general interest. Alongside the basic rules of ethics, aiming to respect human rights and to protect the individual, one must equally take account of the sociocultural context and of geo-ethical aspects, reflecting the perceptions unique to each of the different countries making up the European Union. This is particularly important in as much as it creates a free trade area founded upon the free movement of people, possessions and goods. This requires careful consideration with a view towards better harmonisation of issues concerning the quality and safety of products stemming from new biomedical technologies. A coordinated access to new diagnostic and therapeutic techniques is required as well. Research in biomedical ethics is also based on an ethical approach in the researcher's own thinking, that represents a research code of ethics. Although nothing can hold back the progress of knowledge. Scientists, biologists and medical practitioners must nevertheless provide objective information on the nature of their research, without relying solely on experts or the media. Furthermore, the use of the results of this research must be controlled through legal provisions, if necessary after consultation with the different ethical committees at national as well as at European level. If medical research is to be at the service of knowledge, it is also to be at the service of society in order to help mankind to progress, both economically and socially.
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In conclusion, ethical developments in biomedical research raise the issue of the relationships between science, ethics and society. Biomedical Ethics is related to the evolution of society and must involve a multidisciplinary approach. It implies confrontation between scientists, politicians and public opinion. A strategic orientation of biomedical research policy is now essential. It is based on three concepts: a scientific axis; knowledge, an economic axis; the know-how, a sociocultural axis based on past events, across the whole of Europe. The history of Europe clearly shows our evolution to be based on a reformed humanism. This is an essential element in the ethical progress which aims to identify the place of mankind in our society and to assess the risk benefit aspects as well as the financial consequences. A properly adjusted public health policy must intensify the struggle against diseases while respecting the personality of the human being and the high interest of the collectivity to which he belongs to.
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