ABSTRACTSFourth World Congress of Bioethics (IAB4)
Alastair V. Campbell, President, International Association of Bioethics (IAB)
This Congress aims to unite people from all four points of the compass in a unified, "global" bioethics. But is this a dream of reconciled humanity, like the famous dream of Martin Luther King? Or is it the nightmare of a homogenized, lowest common denominator ethics? - or, worse, of the cultural domination of world bioethics by one set of moral assumptions and style of reasoning?
In this paper I consider the toleration and pluralism enshrined in the Constitution of the International Association of Bioethics. I argue that, given this starting point, global bioethics has to be based on a respect for the richness of human cultures and the fragility of the physical and social environments that sustain human life. The fundamental value of global bioethics is, therefore, humility about our own ethical wisdom, based on an awareness of the limits of rational argument and of the prejudice which distorts our claims to ethical impartiality. The does not mean that rational discourse about ethics across cultures is ruled out, but it does require a critical re-examination of the assumptions on which the "-isms" of bioethics rely. A lively debate at the level of meta-ethics may help to ensure that global bioethics retains a rich texture of moral values and of styles of moral reasoning.
Hyakudai Sakamoto, Professor Emeritas, Aoyamagakuin University, Tokyo
In this talk, I will propose a philosophical foundation of a possible post-modern "Global Bioethics" based on the assessment of scientific and technological achievement of recent bio-sciences, together with deliberate consideration on ethical traditions of each region on the Globe. Then, referring to recent topics of genetics as well as of the environmental crisis, and also arguing the essential distinction between "Genetic Identity" and "Personal Identity", I will sketch a newly emerging "Global Communitarian Bioethics" which is based on the Global-value oriented conceptual scheme specially referring to Asian Mentality instead of the classical idea of "humanism" and, therefore, an alternative to a basis expressed in "fundamental human rights".
Jean-Pierre Changeux, National Consultative Ethics Committee for Health and Life Sciences, Paris, France
The increased globalization of economy, of communication, and of medical assistance raises many issues of ethics at the world scale, 1) A first critical question to consider is the actual possibility of a common agreement on ethical issues between citizens sharing different moral, philosophical or religious traditions. Common predispositions to moral judgment, proper to the human species, may plausibly give access to common ethical values through shared deliberations, despite differences in cultural traditions and social conventions. 2) Among the institutions which have contributed to the opening of the ethical debate at the national level are the various National Bioethics Committees, the first of which was created by France in 1983. Largely on the basis of its deliberations, in 1994 France parliament voted favorably for the Laws of Bioethics which constrain both public and private biomedical research, 3) Extension of the ethical debate at the multi-national scale is achieved in Europe with the Council of Europe and a 8pecialized Advisory committee at the European Union. Furthermore, the UNESCO International Bioethics Committee has recently proposed an Universal declaration on the Human Genome Project and on human rights. Major issues still need urgent consideration at the world scale (e.g. equal access to the benefits of biomedical knowledge and its applications, equal respect of the dignity and human rights of each individual despite poverty and submission to blind and anonymous economic forces). It is proposed to make a further step in creating a Council of Bioethics directly at the level of the United Nations, Its first task would be to propose bioethics guidelines on the world scale and, if successful, in a second step, to elaborate international conventions with Juridical power on bioethical issues. Meanwhile, the French National Consultative Ethics Committee offers to establish a freely open data bank on bioethics at the world scale, at least to find some common ground.
Tom Beauchamp, Kennedy Institute of Ethics, USA
The Foundations of Global Bioethics are independent of the norms of any particular culture, because foundational moral values transcend particular cultural values. The universality of these norms permits criticism of local actions and practices that violate the norms even if these actions and practices are dominant in the culture. These norms cannot be compromised without compromising morality itself. However, this claim does not entail a universality of all moral judgments and conclusions, because there are many forms of legitimate disagreement in bioethics. Universality pertains exclusively to foundational values, not to derivative values. Informed consent and medical paternalism will be used as a test of these theses.
Wendy Orr, Truth and Reconciliation Commission, South Africa
The death of Steve Biko in 1997 was a watershed for the issue of ethics and human rights in the health care sector in South Africa. Not only were the circumstances of his death horrific, but the failure of both the professional and statutory organizations to take any disciplinary action against or even voice disquiet at the conduct of the doctors involved, indicated a shattering disregard for the ethical principles supposedly guiding the profession.
However, human rights abuses by health professionals and in the health care sector predated the death of Steve Biko by decades, Through acts of omission and commission, complicity and collusion, apathy and failure to question, health care workers systematically violated the human rights of millions of South Africans.
Through a number of case studies, this paper will examine the ways in which ethical medical practice was eroded and abuses of the rights of patients became commonplace and accepted in South Africa. The social circumstances and political environment which allowed such a situation to develop, will also be briefly studied.
The case studies will be wide ranging and will highlight national issues e.g. differential allocation of health care resources based on racial classification of the service users; conditions at academic institutions; prison health care; individual violations; manipulation of forensic evidence and the failure of professional bodies to provide appropriate moral and ethical leadership.
Examples of resistance to abuses will also be presented. The role of the Truth and Reconciliation in examining the above issues will be briefly described and the value of such "investigations" will be discussed. The insights gained from the above will then be used to propose ways in which medical ethics can be upheld and a human rights culture established and protected in the health care sector. The lessons learned through the examination of the South African situation will, it is believed, provide valuable guidelines and warning signals for other countries.
Finally, the importance of the link between medical ethics and human rights will be emphasized. The need to translate ethical principles into daily practice will be highlighted.
Dan Brock, Brown University, USA
In the face of scarce health care resources, many assume that resources should be used to maximize the health of populations served. Cost effectiveness analysis (CEA) for the maximization of quality-adjusted life years (QALYs) is the usual quantitative methodology employed. CEA discriminates against persons with disabilities in two important respects. First, QALYs assign different value to life lived in different health states, typically by determining people's preferences for life lived in those health states. Because of adjustment to their disabilities, persons with disabilities typically evaluate their quality of life higher than nondisabled persons evaluate it. If disabled persons' preferences are used to evaluate quality of life in different health states, prevention of disabilities will be unjustifiably undervalued. If nondisabled persons preferences are used, extending the lives of disabled persons will be unjustifiably undervalued. Second, CEA often assigns less value to life extending or quality of life improving treatment for disabled than for similarly situated nondisabled persons. However health states are evaluated, CEA assigns less value to extending disabled than nondisabled persons' lives both because of their lower quality of life and when their disabilities give them a lower life expectancy. With treatments that improve quality of life, treating disabled patients will receive lower priority when their disabilities act as comorbid conditions making treatment less effective and/or more costly. These difficulties challenge fundamental features of CEA for prioritizing health interventions.
Darryl Macer, Eubios Ethics Institute, Japan / New Zealand
Bioethics is both a word and a concept. The word comes to us only from 1970, yet the concept comes from human heritage thousands of years old. I will argue that bioethics is the concept of love, balancing benefits and risks of choices and decisions. This heritage can be seen in all cultures, religions, and in ancient writings from around the world. We in fact cannot trace the origin of bioethics back to their beginning, as the relationships between human beings within their society, within the biological community, and with nature and God, are formed at an earlier stage then our history would tell us.
In this paper I will introduce the alternative language for bioethics outlined in the book Bioethics is Love of Life, arguing that love is a universal virtue, and principle of bioethics. I will argue that love is not only the highest good, but is a normative principle. There are a set of principles or ideals which people use as a common ground for bioethics, or which at least have been suggested to be the key ones. They include the autonomy of individuals to make choices, while respecting the choices of others, justice. In all things we do, the ideal is to avoiding doing harm, and try to do good. I will argue these four principles can be summarized by the word love, as self-love, love of others, loving life and loving good.
I will review the results of the session held on the 31st October where people from a dozen countries discussed the use of love as a fundamental principle of bioethics (see abstracts 31B). Their views support the universal literature found which places love as a premier principle. I will also discuss whether a person who fails to love morally deficient? Does the presence of an ideal put someone off striving harder to help others? Do people just give up totally and become bad? Generally we would not think so, though some hope should be given when we are disappointed by our own failings to reach the ideal. At least we can conclude that we should all try a little harder to reach the common ideal, and the world would be a better place.
William P. Shantz, Private Practice -Psychiatry, Canada
In this century, medical practitioners have developed awe-inspiring abilities and skills to alter disease processes. In addition to the magnified importance and assigned hubris that are associated with such 'healing' ability, the doctor and associated services cost a lot, threatening financial bankruptcy of society - I propose that patients be viewed as participants in procreative endeavour, rather than as complex machines to be 'repaired' or biochemical mixtures to be 'balanced' . Matters of transitive ' healing ' and ' health ' provision can readily be formulated as analogous to heterosexual procreative interaction: the spermatocyte 'heals' - makes whole the oocyte, and the oocyte provides 'health, - wholeness for the sperm cell. 'Doctor' derives from - teacher; physician' from - one who and ' medicine ' means - studies nature ; some thing to be administered to relieve distress. A medical practitioner can carry out these tasks plus work as an ' agent-technician' - one who has been authorized (e.g. by a patient of family member) to perform a technique that he/she has expertise to do without assuming the prerogatives, responsibilities, and 'hubris' of a 'healer'. The ethics of a 'teacher', 'scientist', and 'agent' are different than those of a 'healer', and the essential interaction of medical practice may be better thought of as the 'Patient-Physician Relationship' than 'Physician-Patient Relationship' .
Jonathan Chan, Hong Kong Baptist University, Hong Kong
There are two different views as to the foundations of bioethics. One maintains that conflicts in respect of bioethical issues can be resolved only among people who live in the same community or belong to the same tradition. This is so because people living in different communities or traditions hold different or even conflicting comprehensive doctrines. In consequence, people belonging to different communities or traditions do not share the same set of fundamental moral principles. And it is also impossible to find out a set of universally accepted fundamental moral principles, to which people belonging to different traditions can appeal so as to resolve their conflicts. Let us call this 'the local view'. The other maintains that some form of global bioethics is not only possible but also inevitable if people do not want to resolve their conflicts by force or manipulation., According to this view, the global bioethics pursued is beyond and above the traditions that people adhere. Let us call this 'the global view'. In this paper, it will be argued that neither the local view nor the global view is the only plausible view as the foundations of bioethics and that there is a 'middle way' which is also plausible in respect of understanding the foundations of bioethics.
Daniel Fu-chang Tsai, University of Manchester and National Taiwan University Hospital
The four principles approach to biomedical ethics (4PBE) has, since the 1970s, been developed as a universal bioethics method. Despite its wide acceptance and popularity, the 4PBE has received many challenges to its cross-cultural plausibility. This paper first specifies the principles and characteristics of ancient Chinese medical ethics (ACME), then makes a comparison between ACME and the 4PBE with a view to testing out the 4PBEís cross-cultural plausibility with one particular but very extensive and prominent cultural context. The results show that the concepts of respect for autonomy, nonmaleficence, beneficence and justice are clearly identifiable in ACME. Beneficence and nonmaleficence have always been the keynotes of ACME since humaneness (jen) is the central theme of Confucianism, on which ACME was founded. ACME is also familiar with the concept of yi (righteousness), the equal treatment of all persons and extended help to the worst-off, therefore it is not in want of the concept of justice. Regarding the principle of respect for autonomy, ACME requires physicians to respect their patients as ends but not means via a sincere, decorous, devoted, absorbed and selfless attitude towards medical practice and to appreciate the value of life with equal respect; ACME also contains the rules of confidentiality and telling the truth. However, being influenced by certain socio-cultural factors, the application of the 4PBE in Chinese society may tend to adopt a beneficence-oriented, rather than autonomy-oriented approach, which, in general, is dissimilar to the practice of contemporary Western bioethics where autonomy often triumphs.
Sunil K. Pandya, Jaslok Hospital & Research Centre, India
India has been blessed with a glorious code on medical ethics since the days of Caraka and Susruta (circa 600 BC). This Ayurvedic code embodies the criteria for a good teacher and who should study medicine. It also offers counsel on behaviour with patients and their relatives and pointers that can be used by us when dealing with such issues as brain death and organ transplantation. Especially striking is the emphasis on transcending the needs of the body, mind and intellect in order to reach a state where the cycle of birth - death -rebirth is broken.
This ancient code is reflected in the codes set up by Buddhism and Jainism - offshoots from the Hindu faith. The Islamic code of ethics was not as well defined in India. Based on the teaching in the Koran, the Muslim doctor was expected to do all he could to save life and promote morality.
Modern Indian doctors appear to have forgotten their ancient heritage. The Medical Councils in New Delhi and the various states have failed to ensure a high moral standard in the medical profession. Much needs to be done if we are to return to the standards that prevailed when Caraka and Susruta practiced medicine here.
Soren Holm, University of Copenhagen, Denmark
It is now generally accepted and uncontroversial that biomedical research with human subjects usually requires informed consent. Informed consent is, however, neither a sufficient nor an absolutely necessary condition for the ethical conduct of research. Research may be unethically conducted even in cases where full informed consent has been obtained. It is argued that such cases are not rare, and it is discussed how research ethics committees can participate in minimizing the problem. There are also cases where standard informed consent cannot be obtained. It is discussed whether other forms of consent are available, and further what a researcher and a research ethics committee should do if no informed consent can be obtained. It is concluded that the research ethics committee of the 21st century must take on a much larger role than just approving research projects. It will have to engage itself in active monitoring of research conduct, and in constructive moral thinking to solve more and more complex consent problems.
Richard Ashcroft, University of Bristol, UK
It is widely maintained that a clinical trial is ethical only if some form of equipoise between the treatments being compared is obtained. This condition, if sound, provides a useful test of whether the trial is beneficent and fair to all of its participants. Since the condition was devised by Benjamin Freedman, a number of competing modifications have been proposed. All debates over versions of the condition refer to the social context of clinical research: depending on the version in question, equipoise should be expressed by one of the practitioner, researcher, profession, founder/sponsor, affected patient population or society at large. But the core of the condition is epistemic: equipoise reflects individual or collective indifference between assertion of the proposition "treatment A is superior to treatment B" and its converse. Equipoise justifications of trials turn on socially controlled and negotiated judgments of epistemic indifference.
In terms of ethical justification of trials (in particular cases or in general), equipoise theories do us the service of underscoring the social element in trial planning, design and governance. But they do so by translating ethical judgments into epistemic judgments; and the debate over the various theories of equipoise rest on some quite vague ideas about knowledge and belief. I will argue that the most natural way to theorize the epistemic content of equipoise theories is by applying Bayesian ideas in epistemology. I will discuss some problems this approach raises for justifying the equipoise condition, by showing that the social problems raised in the equipoise debate thus far arise quite generally in epistemic guise in the Bayesian theory. In particular I will discuss the social and epistemic problems that arise in stopping trials early and in determining the minimum effective (and ethically legitimate) size of a trial. I will conclude by discussing the ramifications these problems have for the project of Evidence-Based Medicine.
Christian Munthe, Goteborg University, Sweden
Standard versions of the requirement of informed consent state that patients who are offered to enter a clinical trial of a medical procedure should be informed about risks and possible benefits of this procedure (compared to available alternatives) in order to facilitate a rational decision whether or not to participate. However, in many real cases where new medical procedures are to be clinically tested for the first time the information available for such communication to prospective patients is very scarce, vague and/or uncertain. This phenomenon is illustrated by the clinical introduction of new procedures in reproductive medicine, such as preimplantation genetic diagnosis (PGD). Regarding such procedures, it has been argued that, in such cases, the quality of the available information may be too low for the obtaining of informed consent to be possible, even if it is successfully communicated. Others, instead, holds that informed consent may always be obtained regardless of the quality of the available information. Unfortunately, the standard literature on informed consent give no clue as to which of these interpretations is correct. This issue is explored by connecting the concept of informed consent to ethical ideas of respect for autonomy and ideas of rational decision making. It is argued, first, that low quality of available information regarding the risks and possible benefits of a medical procedure may indeed make the obtaining of informed consent from patients to undergo this procedure impossible even in theory. However, it is also argued that whether or not this is the case must be relativized to the actual needs and desires of individual patients. Thus, regarding one and the same procedure, informed consent may be impossible to obtain from some patients due to the low quality of the available information regarding this procedure, but still be possible to obtain from other patients.
Emilio Mordini, Psychoanalytic Institute for Social Research, Italy (Cancelled)
Important changes occurred in vaccination due to new molecular biology and the better understanding of the immune system. The ability to manipulate DNA, the ability to synthesize oligopeptides and "package" them in different ways, the development of new adjuvants, the ability to enhance the type and persistence of the immune response have overturned conventional views on vaccination. There are currently about 25 vaccines in use, but about 34 other different vaccines are being developed. A likely timetable for new vaccines forecasts for instance vaccines for varicella, hepatitis A and cytomegalovirus within 5 years and vaccines for many STDs, including HIV, herpes, and chlamydia, within 10 years. Moreover new vaccines have been proposed as a therapeutic agent (i.e., to improve the immune response) in several diseases, such as AIDS, rheumatoid arthritis, multiple sclerosis, melanoma, breast and colon cancers. Yet dramatic results are expected in new vaccines in veterinary and agriculture. Another important improvement is expected in vaccine production. The cost of administering an EPI vaccine is at least 10 times the cost of the vaccine. Although it is unlikely that this ratio will hold for many future vaccines, reducing the number of visits of health care workers for vaccine administration could clearly result in great savings. The Children's Vaccine Initiative (CVI), established in 1990 by the Rockefeller Foundation, United Nations Development Programme, UNICEF, the World Bank, and WHO. It aims at developing a single vaccine involving the use of DNA recombinant preparations, which could protect against all infectious diseases with a single oral dose administered any time after birth. It has been also proposed to use lactic acid bacteria (LAB), which are commonly used in fermented food and feed, as vehicles for oral vaccination. The idea of using crop plants for producing recombinant edible vaccines is also being investigated. All this promises to overturn every current ethical, legal, and social standard surrounding vaccines and vaccination.
In April 1998, the European Commission launched a research project on "Ethical, legal, and social aspects of research on new vaccines and vaccination policies" (EURO ELSAV, contract nr BMH4 98 3197), involving the Psychoanalytic Institute for Social Research (IT), the Unit of Biochimie Cellulaire of the CNRS (FR), Center for International Health of the University of Bergen (NO), the Centre for Professional Ethics of the University of Central Lancashire (UK), and the Dept. of Immunological Research of the Immuno AG (AT). This paper intends to present some midway results of EURO ELSAV.
Nikola Biller, University of Goettingen, Germany
The placebo effect tends to have a bad reputation in biomedical ethics. It evokes the notion of deception, paternalism, and outdated clinical practice. Until the Seventies, bread or sugar pills were liberally distributed as therapy, and even sham procedures were performed. With the patient autonomy movement, however, the image of the placebo effect changed. It came to be seen as an undue attempt on the doctors' side to have the patient rely on his or her care even if they had no clear idea about diagnosis and no specific treatment at hand.
Recently, however, with growing financial constraints in health care as well as an increasing appreciation of "complementary medicine", there have been voices in the medical community that call for a reappraisal of the placebo effect, understood in a broader sense as non-specific therapy or "remembered wellness". Psychopharmacological research, psychoneuroimunology and a biopsychosocial approach to medicine that focuses in treatment on the individual's suffering rather than on disease entities provide the theoretical frame for this reconceptualization and reintegration of the placebo effect into medicine.
So far, these changes has not yet been explicitly addressed by medical ethics. This. paper will therefore: 1) describe the reconceptualization of the placebo effect taking place within the medical community, 2) outline its current and potential therapeutic use and 3) attempt a bioethical reevaluation. Contributions from discussants illuminating the perception of the placebo effect in other cultures will be welcomed.
Erin D. Williams, Leslie A. Platt, & Stephen J. McCormack, Foundation for Genetic Medicine, USA
In the public discourse relevant at the inception of the era of genetic medicine, many public and private interests, groups and individuals around the world have expressed a range of views on the ethical, legal, and social implications of genetics and its potential applications. Amid the discourse, widespread "genomic illiteracy" and a lack of consensus on acceptable practices have confused exchanges regarding science policy and scientific issues. In this climate, an approach that supports development of standards for privacy safeguards, informed consent, weighing risks and benefits, and other areas impacted by genetics is needed. For example, a common set of genomics terminology would help enable genomic literacy and support informed discourse in the development of appropriate, broadly acceptable practices and policies related to genetic medicine and its applications. Another helpful step would be the articulation of statements of recognized common ground that integrate the disciplines, underpinnings, and procedures surrounding genetic medicine. These "Generally Accepted Principles, Protocols and Practices" (GAPPP), can serve as guidelines suggested to improve practices and prevent misuse of genetic medicine. GAPPP have the potential to address issues that extend beyond professional conduct into the broader sciences as well as the human condition.
Keith Joseph, Plunkett Centre for Ethics in Health Care, St. Vincent's Hospital, Australia
One major line of argument against germ-line genetic engineering upon humans is that the consequences are unknown or unpredictable, Thus, it is claimed, we should invoke the precautionary principle, and as a matter of caution not proceed with germ-line genetic engineering. Critics of this view argue that there have been many technological interventions where the consequences have been unpredictable and even risky, but from which we have benefited. Fear of the unknown and caution about the unpredictable nature of genetic interventions are, by themselves, not sufficient cause for refusing to early out germ-line genetic engineering. This is particularly so given the tremendous benefits that the technique promises in terms of the treatment and relief of disease.
However, recent research has shown that genetic algorithms are chaotic; as a consequence genetic interventions will also be chaotic. Furthermore, germ-line genetic engineering IS designed to be long-lasting and to amplify throughout succeeding generations. Thus we can reasonably expect, as a result of the unpredictable nature of such interventions, that there will be long-term and lasting adverse results from genetic engineering which will be amplified rather than dampened as time goes on.
This means that germ-line genetic engineering is unlike other technological interventions: for In other interventions the intervention is not self-replicating or exponentially amplified, and with therefore have a tendency to be dampened and washed out by the environment. Consequently the precautionary principle, which is fairly weak when applied to most new technologies, may have a far stronger application in relation to germ-line genetic engineering upon humans.
Soren Holm, University of Copenhagen, Denmark
The paper discusses to what extent we can expect to attain informed consent when we perform gene therapy experiments. It is shown that such experiments differ from standard drug testing in three ways: 1)They occur much earlier in the development of the technology; 2) Their outcome is more uncertain; 3) They may take the form of an "offer you cannot refuse". It is argued that although these differences between gene therapy research and standard drug testing do cast doubt on the informed nature and the voluntariness of the consent, these doubts are not sufficiently strong to rule out genetic experimentation on humans.
Kaori Muto Yamamoto, The Health Care Institute, Japan
In many countries, Huntington's Disease (HD) is a symbolic disease in bioethics and often discussed when considering pre-onset genetic predictive testing. In Japan, however, we don't have patients' association of HD. Guidelines for the molecular genetics predictive test in Huntington's Disease (International Huntington Association / World Federation of Neurology (1994)) is not known to either families with HD or physicians. Even health care professionals (nurses, social workers and public health nurses) are not familiar with HD. The reason is the small number of HD patients in Japan. Even so, we need to know what is happening now and should construct some guidelines for predictive testing. The objectives of this research were: 1) to clarify the comprehensive and actual condition (informed consent and genetic predictive testing) in Japan; 2) to discuss the need for guidelines and patients' association for HD; 3) to compare the situations in some countries which have Huntington's Associations of their own. The subjects where family members with HD and their physicians in Japan, and semi-structured interviews were conducted.
Some family members did not know predictive testing is possible. One of the big reasons is that the genetic counseling system is still not popular in Japan so that physicians hesitate to tell them. Physicians seem to be reluctant to undergo predictive testing. Others are isolated in the community because they try to hide the name of their disease, even within the family. They are afraid of marriage discrimination and seem not to be interested in patients' association.
Miyako Okada-Takagi, Toyoko Gakuen Women's College, Tokyo, Japan
Japan's first gene therapy was performed in the summer of 1995 by Hokkaido University researchers on a 4 year old boy who suffered from adenosine deaminase deficiency. University team used the same method as the one used in the U.S. as the first gene treatment. Being 5 years after the first use of gene therapy in the U.S., this is evidence enough of Japan's slow progress in the field. The Institute of Medical Science (IMS) of Tokyo University approved a gene therapy for cancer patients in 1995, but the Health & Welfare Ministry called a temporary halt to the plan, forcing IMS to postpone the approval until 1998. The ministry complained that IMS had not done enough to confirm the safety of a virus used to transport the normal gene to the cancer cell. The main cause of this problem is that a system to confirm gene therapy's safety has yet to be established in Japan. Another problem is the examining process. Bureaucratic obsession with turf has once again presented itself with the two ministries maintaining separate panels devoted to the same purpose. The review process should be streamlined.
The U.S. National Institute of Health (NIH) won a patent for the technique of ex vivo gene therapy in 1995. NIH has been awarded a patent for the well-established procedure of ex vivo gene therapy. The problem is that many of the protocols being developed in labs around the world infringe this patent. Japan and Europe take a more narrow view on such patents, and that is the source of the bone of contention.
Vladimir I. Ivanov, Research Centre for Medical Genetics and The Russian State Medical University, Russia
Modern genetics offers quite a number of research, diagnostic, prognostic, and therapeutic technologies, medical application of which can interfere with human somatic, reproductive, mental, and moral status. In the last decade this situation has attracted public attention at the national and international levels. At the latter, respective documents were recently issued by UNESCO, WHO, Council of Europe, etc. In ethnically and culturally heterogeneous nations, like Russia it is especially difficult to find a "common denominator" to diverse viewpoints and estimates of good vs. evil consequences of particular invasive medical genetic procedures. The moral aspects of the problem comprise now a major topic of public debate in scientific, medical, and religious circles. The legal regulation of the use of genetic technologies in public health care and in research is restricted as yet to general legislation of the health care and the federal bill regulating the activities in genetic engineering.
Sarah Marchand, Daniel Wikler, Bruce Landesman, University of Wisconsin, USA
Research over the past 15 years has demonstrated conclusively that class is a powerful determinant of health, even when all have access to health care. Class inequalities in health are intuitively unjust; but what, precisely, is the nature of this injustice? We present four alternative views. Three call on health policy to maximize health, but differ in what they want maximized (the sum total of health in a society; the health of the lowest social class; and the health of the sickest individuals, respectively); the fourth calls for equalization of health status across class lines.
Paul Menzel, Pacific Lutheran University, USA (presenting work co-authored with Marthe Gold, Erik Nord, Jose-Luis Pinto Prades, Jeff Richardson, and Peter Ubel)
Conventional cost-effectiveness analysis in health care is relatively insensitive to many "societal values" that emerge if people are asked interpersonal trade-off questions rather than questions focused more on individual health utility. Such societal values include special considerations for severity of illness, lifesaving, and limited health potential, as well as those for maintenance of hope, age, and duration discounting. The recognition of such societal values in measuring "effectiveness" also reveals other structural problems in conventional cost-effectiveness analysis. The selective expansion of economic analysis to incorporate such societal values may be justified; in any case, cost-effectiveness analysis as currently practiced seriously misrepresents the priorities of citizens or subscribers living within a health care system.
Leo Pessini, Brazilian Society of Bioethics
Bioethics in Latin America is experiencing an extraordinary growth in this last decade of the millennium. All over the continent, is happening many new initiatives in terms of events, seminaries and congresses. Recently was celebrated a mega event in Colombia(Bogota, June 98) the III Latin American Congress of Latin America and Caribbean region, with the participation of 1600 ( on thousand and six hundred people) of all region, with the coordination of FELAIBE ( Latin American Federation of institutions of bioethics) the main body of bioethics in the region. Besides this, in many countries of the region were created new associations of bioethics in a national level, as well as, many ethics committee for ethics on research involving human beings (case of Brazil).
Understanding bioethics as "a responsibility toward life" it's necessary to ask, about what kind of bioethics is urgent to build in order to respond to the cry of the people for more social justice, equity, quality of life, human rights and peace in the region, specially in politics, human procreation and in the front of biotechnology.
Pursuing this direction, our presentation points out come cultural characteristics of the Latin American people that have great impact in how to elaborate bioethics that has a message of life for this reality. In this paper our journey starts from the principles paradigm toward a Latin American perspective making some comments about the bioethics "made in EUA", and Europe in confront with Latin America. It's necessary broaden the horizon in terms of the ethics reflection, from the micro to macro level and to develop a "mystic" for the bioethics among other aspects. This agenda for the bioethics, can help in the task of constructing a bridge, not only toward the future (V.R. Potter) but also as a bridge of multi and transcultural dialogue for life among the different peoples and cultures.
Bela Blasszauer, Medical University of Pecs, Hungary
The title of the paper came as a natural and legitimate question after the author's 31 years of work at a medical university. He is convinced that in a feudalistic, highly hierarchical university system no humanistic, patient-oriented medicine can be promoted. The lack of democratic atmosphere within the walls of the university very much influence the behavior of the future physicians and has a very negative impact on the whole system of health care. There are still those who want to keep a rigid hierarchical system, together with such a paternalistic attitude which is very anachronistic even in Hungary. This system is self-serving, giving unlimited power to those who lead departments and clinics, while this tremendous power is uncontrolled, not even accountability exists. Medical students mainly learn and must learn to fall in line, constantly please the teachers and respect unconditionally those who are in power. In clinical setting they witness how clinicians deal with patients as ones who are in the bottom of the hierarchy, while their treat their superiors as gods. No doubt is in the author's mind that there are many medical schools around the word where humane health care is promoted, where colleges and universities exist for the sake of the students and not vice versa.
Frank Leavitt, Ben Gurion University of the Negev, Israel
Medical research is in the paradoxical situation that while, on the one hand, it is getting more and more difficult to perform even retrospective epidemiological studies within the constraints which ethics is demanding, intervention studies with no clear medical benefit to the patient are being performed on infants with no genuine informed consent. A salient example is the study, reported this year in the BMJ, of effects of 15% oxygen on breathing patterns and oxygenation in infants.
There can be no genuine informed consent in research on infants because it is impossible to explain the research to the patient (the baby). And the people who give the consent (the parents) are not the patient. Any intervention clinical research presents a possibility of iatrogenic harm to the patient. But retrospective epidemiology only threatens privacy, and computerized anonymization can nullify this danger.
So this paper suggests reversing the situation, forbidding intervention pediatric research (especially neonatal) when there is no clear medical value to the patients, while recouping the losses to medical research by relaxing ethical constraints on non-intervention, retrospective epidemiological research.
Billy F. Andrews. Dept. of Peds., University of Louisville School of Medicine, USA
Informed consent, especially for adults, arose in the 19th century; however, early pioneers in modern surgery, medicine and pediatrics pioneered the right of informed consent commensurate with age. The great interest in child abuse and the implications of medical research on infants and children led to legislation in the 1950's and 1960's in the United States. "The Children's Bill of Rights" (1968) which advocated informed consent for children was translated into all major and many languages and was used in areas of legislation. In 1989 the very comprehensive "United Nations Convention on the Rights of the Child" included the rights of the child for consent to medical therapies and procedures. Now the children of many nations enjoy varying degrees of this right. Vignettes and examples from famous scientists will be used to show students of medical ethics how and why the concept arose. The historical approach to the constantly changing patterns of medical discovery and the ethical awareness of their impact upon the human subject is worthy of study. "Ethics is the highest possible level of moral thought and action".
Leonardo D. de Castro, University of the Philippines, the Philippines
A study conducted at two medical centers in Metropolitan Manila surveyed attitudes of pediatricians towards the treatment of severely deformed neonates. The results may be contrasted with earlier findings by other authors using the same questionnaire in Victoria (Australia), Calgary (Canada), and Warsaw (Poland).
Compared to pediatricians in Victoria and Calgary, more Filipino physicians believe that in all circumstances every possible effort should be made to sustain life. They cite religious reasons for their response. Paradoxically, a big number of the respondents have had the experience of making decisions not to exert maximum efforts to preserve infants' lives. Explanations may be found in the distinction between ordinary and extraordinary means, in the distinction between active killing and allowing to die, and in an understanding of "sanctity of life" that is not thought incompatible with accommodating quality-of-life considerations. There may also be some ambiguities in the meanings physicians attach to above ethical categories.
The study further reveals an approach to clinical practice in the Philippine setting that puts physicians at the center of the process and minimizes the contributions of other members of the treatment team. It also shows that Filipino physicians do not believe at medical ethics should be controlled by legislation.
Zelina Ben-Gershon and Bracha Rager, The Chief Scientist's Office, Ministry of Health
The advances in human genetics that have occurred during the past decade have enabled us to obtain a large amount of information on the present and future health of a person and of his relatives, simply by testing a drop of his blood. Recent advancements may also enable genetic intervention, in addition to genetic testing. There is a need to balance between the right of the individual for privacy, the desire to use sophisticated solutions for problems of reproduction, the advancement of research in medicine and science, and the wish of representatives of the public to set limits to the use of such methods.
In an attempt to reach such a balance, two laws will soon be submitted to the Knesset, the Israel Parliament: 1) A law on the protection of genetic information 1998; 2) Legislation forbidding genetic intervention (cloning of human beings and the genetic changes in germ line cells) 1998. The purpose of the first law is to provide regulations for performing genetic tests in a way which will protect the confidentiality of an individual's genetic information, including the results of genetic tests, while not interfering with the quality of treatment or with research and development in medicine and in life sciences. The second law forbids the cloning of human beings and the use of germ line gene therapy. In addition, it establishes an advisory committee that will follow developments in medicine, science and technology involving genetic experimentation in humans and will report annually to the Minster of Health on these matters.
Kiran Prasad, University of Wisconsin, USA
Health information in medical records is arguably the most intimate and sensitive data maintained about a person. Medical record keeping is presently in the midst of an historic transformation, as the written chart gives way to the electronic medical record. While greatly enhancing administration and research, this new system neglects serious questions about privacy. Computerization of health information allows secondary use of sensitive personal data by employers, marketing firms, and insurance companies threatening the patient's job, health insurance, and even personal relationships. The public is largely unaware of these risks, and health care institutions have yet to address the issue...
Egbert Schroten, Utrecht University, The Netherlands
As chairman of the Dutch National Committee on Animal Biotechnology some of the issues discussed and policy formed will be discussed.
Robert Veatch, Director, Kennedy Institute of Ethics, USA
Any biomedical ethic that is complete and systematic must become explicit about its foundations. It must articulate its rock-bottom grounding, its foundational starting point (or defend the claim that one may do bioethics without a foundation). It must also make clear its epistemological assumptions-who can claim authority for knowing the moral content found at those foundations.
Some systems that purport to be ethics ground their norms in nothing more than the norms of a social group, a country, ethnic group, or religion. These are not really ethics, ultimate underpinnings for standards of moral conduct, but merely social mores. Any true ethic, and therefore any true bioethics must have universal foundations, that is, must be grounded in source that applies to all humans regardless of culture.
This does not rule out the existence of universal duties based on special role relations. Feminist bioethical theories that identify special duties growing out of special relations, for example, can still be universalistic. What cannot pass the universalistic test is any biomedical ethic that claims that the ground of professional duty is the consensus of the professional group or that only members of a professional group have epistemological authority to know the norms of the professional/lay relation. Hence, the Hippocratic Oath and the Declaration of Geneva are, in principle, have unacceptable foundations. They must be replaced by ethics that are more publicly grounded.
These foundational issues have implications for normative ethical theory as well. The presentation will argue that theories of morally right action (including principle-based theories) have more potential to meet the criterion of universalism than do virtue-based theories (including care theory and those based on benevolence, compassion, or the Hippocratic virtues of purity and holiness). Virtues are crucially important for a small, intense group (a Gemeinschaft) while action principles are more appropriate for bioethics among strangers. There are very different principle-based systems, however. They involve different numbers of principles and different theories for resolving conflict among the principles. Balancing theories will be contrasted with those that lexically rank principles and a mixed ranking/balancing strategy will be proposed.
Susan Sherwin, Dalhousie University, Canada
I shall explore the implications of the architectural metaphor at the heart of foundationalist approaches to ethics and bioethics and review some of the ways in which this metaphor directs (and constrains) thought. I shall argue that the metaphors of frameworks and of lenses better capture the ways we should pursue bioethical investigations and they cohere more closely with actual ethical practices as determined by cognitive scientists. Moreover, they encourage us to appeal to the insights available from multiple theories without binding us to the use of a single narrow, exclusionary approach.
H. Tristram Engelhardt, Jr., Baylor College of Medicine/Rice University, USA and Allyne L. Smith, Jr., University of Osteopathic Medicine and Health Sciences, USA
At first blush it might appear that the American standard version of bioethics replete with its principalism and ethics committees has taken possession of the bioethical conscience of the world, providing the foundations for an international health policy. Across the world bioethicists invoke a quarternity of principles and an American understanding of autonomy is brought to the physician-patient relationship across the globe. Yet a closer examination of the contemporary state of affairs reveals not only moral diversity internationally, but foundational moral disagreements in North American bioethics itself. Far from appeals to moral principles, moral casuistry or the balancing of moral claims resolving controversies regarding the character of just health care distributions, the moral significance of the human genome, the probity of abortion, or the acceptability of physician-assisted suicide, there are deep and persisting controversies concerning these and other moral issues. The character of moral argument is such that the resolution of moral controversies always presupposes a particular ranking of values, a particular ordering of moral principles, a special moral sense, a concrete moral understanding of nature, or a particular thin theory of the good and the right. Even if one does not succumb to a metaphysical skepticism one is lodged in a moral epistemic condition which makes impossible the resolution of many substantive moral controversies by sound rational argument. With different understandings of autonomy and justice, appeals to such principles divide rather than unite. There is not one content-full moral narrative available to direct moral decisions and justify health care policy. There is a de facto moral diversity that need not lead to a de jure moral relativism. A moral pluralism can be recognized within very general and abstract moral constraints, leaving considerable room for substantially different, content-rich approaches to bioethics and health care policy, including Asian approaches to bioethics. A canonical, content-rich, secular global bioethics cannot be justified. Its international imposition would be immoral.
David J. Rothman and Sheila M. Rothman, Columbia College of Physicians and Surgeons, New York, USA
This paper will present the conclusions of the Task Force with a focus on the ethical and social issues raised by the sale of organs and the use of organs from executed prisoners. It will present the positions of international medical societies, explore the gaps in their policies, and analyze the ethical and social dimensions of the practices that have heretofore been neglected. It will conclude with recommendations for change in policies and practices that the Bellagio Task Force endorsed.
in Brazil and South Africa
Nancy Scheper-Hughes, University of California - Berkeley, USA
This presentation will be based on field work in the two countries that has just been conducted. It will focus on the gap between law and practice, the role played by individual physicians and transplant teams, and the place of transplant in the public imagination.
Lawrence Cohen, University of California - Berkeley, USA
This presentation will be based on field work that has recently
been carried out in India. It will explore the impact of the
new Indian legislation on organ donation; it will also examine
in depth the motives and fate of those who continue to sell their
organs and those who purchase them.
Sue Sherwin, Dalhousie University, Canada
I shall argue that autonomy is best understood as a relational
concept that is based upon a contextualized, relation understanding
of the self rather than the traditional notion of an independent
self. Social and political factors associated with such features
as gender, race, culture, sexuality, class, and ability status
affect an individual's autonomy for they tend to affect all the
conditions commonly associated with autonomy (including knowledge,
evaluations of competency, and scope for voluntaries). Society,
and not just the individual, should be evaluated in considerations
of autonomy, since promoting autonomy sometimes requires change
in social and political conditions.
Françoise Baylis, Dalhousie University, Canada
On October 31, 1997, the Supreme Court of Canada rendered its
decision in Winnipeg Child Services (Northwest Area) v. G. (D.F.).
The court held that its parents patriae jurisdiction did not
extend to the authorization of judicial intervention on behalf
of the fetus. The Supreme Court decision was not unanimous,
however. Justice Jack Major and the late Justice John Sopinka,
dissented from the majority opinion. Major J. (for himself and
Sopinka J.) argued that the court has the authority to confine
a pregnant woman in order to prevent her from causing serious
and permanent damage to her fetus, provided the following minimum
thresholds conditions are met: 1) The woman must have decided
to carry the child (sic) to term. 2) Proof must be presented
to a civil standard that the abusive activity will cause serious
and irreparable harm to the foetus. 3) The remedy must be the
least intrusive option. 4) The process must be procedurally
fair. (para 96)
On the facts of the case before the Supreme Court, Major J. concluded
that the test for judicial intervention in pregnancy had been
met. This paper focuses quite narrowly on the dissent and its
underlying assumption that judicial intervention in the lives
of pregnant women with substance abuse problems is, under certain
conditions, both permissible and advisable. Although the dissent
has no legal force, aspects of the argument advanced by Major
J. have powerful intuitive appeal. For this reason, it is important
both to critically examine the dissent, paying particular attention
to the first two threshold conditions, and to challenge the assumption
that involuntary state intervention is an appropriate response
to complex social-medical problems such as substance abuse in
Zhu Wei, Shanghai Medical University, China
By women's autonomy in reproduction I mean the conscious and
autonomous choice women make as to whether or not to reproduce,
how often to reproduce, when to reproduce, at what intervals to
reproduce and what methods for contraception. I will discuss
the problem Chinese women face over autonomy in reproduction.
There are sufferings from inappropriate policy-making and its
adverse consequences, pressure from the families and male-orientated
cultural tradition, and new challenges of a market economy.
Sandra Eagle, University of Virginia, USA
In the United States, the individual state's
interest in protecting a fetus is superseding a woman's autonomous
rights to control over her own body, State laws will have to be
challenged at the Supreme Court level to guarantee a pregnant
woman the right of full citizenship.
52B1. The role of gender, race, and culture in autonomy discussions
52B2. Pregnant women and substance abuse: A recent supreme court of Canada decision
53B3. A dilemma on women's autonomy in reproduction
52B4. Whitner v. South Carolina: Maternal vs. fetal rights in united states' state and federal law
Sue Sherwin, Dalhousie University, Canada
I shall argue that autonomy is best understood as a relational concept that is based upon a contextualized, relation understanding of the self rather than the traditional notion of an independent self. Social and political factors associated with such features as gender, race, culture, sexuality, class, and ability status affect an individual's autonomy for they tend to affect all the conditions commonly associated with autonomy (including knowledge, evaluations of competency, and scope for voluntaries). Society, and not just the individual, should be evaluated in considerations of autonomy, since promoting autonomy sometimes requires change in social and political conditions.
Françoise Baylis, Dalhousie University, Canada
On October 31, 1997, the Supreme Court of Canada rendered its decision in Winnipeg Child Services (Northwest Area) v. G. (D.F.). The court held that its parents patriae jurisdiction did not extend to the authorization of judicial intervention on behalf of the fetus. The Supreme Court decision was not unanimous, however. Justice Jack Major and the late Justice John Sopinka, dissented from the majority opinion. Major J. (for himself and Sopinka J.) argued that the court has the authority to confine a pregnant woman in order to prevent her from causing serious and permanent damage to her fetus, provided the following minimum thresholds conditions are met: 1) The woman must have decided to carry the child (sic) to term. 2) Proof must be presented to a civil standard that the abusive activity will cause serious and irreparable harm to the foetus. 3) The remedy must be the least intrusive option. 4) The process must be procedurally fair. (para 96)
On the facts of the case before the Supreme Court, Major J. concluded that the test for judicial intervention in pregnancy had been met. This paper focuses quite narrowly on the dissent and its underlying assumption that judicial intervention in the lives of pregnant women with substance abuse problems is, under certain conditions, both permissible and advisable. Although the dissent has no legal force, aspects of the argument advanced by Major J. have powerful intuitive appeal. For this reason, it is important both to critically examine the dissent, paying particular attention to the first two threshold conditions, and to challenge the assumption that involuntary state intervention is an appropriate response to complex social-medical problems such as substance abuse in pregnancy.
Zhu Wei, Shanghai Medical University, China
By women's autonomy in reproduction I mean the conscious and autonomous choice women make as to whether or not to reproduce, how often to reproduce, when to reproduce, at what intervals to reproduce and what methods for contraception. I will discuss the problem Chinese women face over autonomy in reproduction. There are sufferings from inappropriate policy-making and its adverse consequences, pressure from the families and male-orientated cultural tradition, and new challenges of a market economy.
Sandra Eagle, University of Virginia, USA
In the United States, the individual state's interest in protecting a fetus is superseding a woman's autonomous rights to control over her own body, State laws will have to be challenged at the Supreme Court level to guarantee a pregnant woman the right of full citizenship.
In October of 1997, the South Carolina Supreme Court ruled in Whitner v. South Carolina that a woman may be held criminally liable for actions taken during pregnancy. This ruling was the first time that a state high court upheld the criminal prosecution of pregnant women addicted to drugs for child abuse. Its decision also affirms the status of the fetus as a person entitled to full civil rights Nationwide at least thirty other states have used various criminal statues to bring charges of child abuse against pregnant women who use illegal drugs or alcohol. By pursuing punitive measures including imprisonment, custody deprivation, and special criminal laws aimed exclusively at pregnant women, courts, legislators and prosecutors hope to reassert the state's power to regulate reproductive rights. And they may succeed. The vagueness and ambiguity of the Supreme Court's opinions on privacy and fetal personhood clear a space for argument. Specifically, the South Carolina case reinstated an eight-year prison sentence given to Cornelia Whither whose baby tested positive for cocaine use after he was born. Stating that "South Carolina law has long recognized that viable fetuses are persons holding certain legal rights and privileges." the court held that "prenatal injuries tortuously inflicted on such a child are actionable..." Whither (whose son is now a healthy eight-year old) was sent to prison. In explaining its decision, the Carolina court cited the US Supreme Court's aforementioned decisions in Roe v. Wade (1973), Planned Parenthood v. Casey (1992), and Webster v. Reproductive Health Services (1989). By reasoning that the "personhood" of the fetus plus the "compelling interest" standard of the state trumped the liberty rights of the pregnant women, the court staked out an authoritative claim for its encroachment on the mother's privacy and its subsequent punitive measures.
Has the state infringed upon a woman's constitutional rights to privacy, equal protection and due process? Has the state applied different standards to a pregnant woman that do not apply to non-pregnant women or men? Does the Roe decision apply only to the power to restrict abortion or does it give the state power to regulate pregnancies to term? What are the rights of a third party? Should the court be able to lay claim to babies in utero? In short, to what extent must women's reproductive status qualify or undermine her right to self-determination and full citizenship?
Serap Sahinoglu Pelin, University of Ankara, Turkey
Pre-marital sex for a woman is regarded as wrong in my country. As a result, it is socially forbidden for a woman to engage in this act. In order to present a woman as a virgin on her marriage day, she is subjected to pressure, and put under control both by her family and societal norms. A woman found to be a virgin on her first night of marriage is seen as a normal person while the one suspected to have lost her virginity is made to undergo series of medical examinations to bring clarity to her situation. the hymen examination made by a physician in order to find out if a woman is having sexual intercourse with a man for the very first time, in known as "hymen examination". this practice can be seen as exercising a certain control over a woman's sexuality. In our country women have various medical ethics problems: among these being abortion, psychiatry, sex' selection etc. In this sense, unlike countries, the demand for hymen examination comes out as an important problem in medical ethics. In this presentation, I'd like to talk about hymen examination, or rather "perineum examination" as it is known in forensic medicine, which is a very important social cultural subject with tragic ethical problems in Turkey.
Hajime Mizoguchi, Rissho University, Japan
Recently, it has been reported that the ethical committee of
Saitama Medical College permitted a professor of plastic surgery
to perform the transsexual operation from female to male on the
patient with gender identity disorder. That trans-sexual operation
is thought to be a kind of object of medical care. This is the
first such judgment in Japan. In this study, I discuss the bioethical
aspects of gender identity disorder and transsexual operation.
It contains the relationship between the loss of reproductive
ability, the seeking for self-fulfillment, and legal problems.
Ming-Jen Yang*1, 2, 3, Yung-Chieh Yen1, Cheng-Chung Chen1, 2, 3, Mian-Yoon Chong1, 2
1 Department of Psychiatry; 2 Institute of Behavioral Science; 3 School of Medical Sociology, Kaohsiung Medical College, Taiwan; *Department of Psychiatry, Chang Gung Memorial Hospital Kaohsiung, and Chang Geng University, Taiwan
52C2. Is it wrong to deliberately conceive or give birth to a child with mental retardation?
Simo Vehmas, University of Jyvaskyla, Finland
In this presentation I analyze the moral status of future people and the obligations of moral agents to them. I discuss this problem by criticizing a utilitarian argument, namely, that one should act in a way that results in less suffering and less limited opportunity in the world as well as a position which emphasizes that parents should act in a way that ensures that their child is able to have the average health status of its birth cohort. Both of these accounts are questioned in this paper. I will argue that the essential point in the discussion of how we should act when what we do affects the well-being of future children is the moral responsibility of parents to commit themselves to the good of their present or future children. Also, there are morally significant differences between 'selective contraception' and selective abortion.
Chirita Vasille and Roxana Chirita, University Psychiatric Hospital "Socola", Romania
Romania has passing these years a so-called period of transition which is marked yet by post-totalitarian features. The Romanian society is confronting with severe economical crisis, as well as a "moral crisis". It is a matter of common knowledge that in Eastern Europe the official philosophy, which was Marxism, denied the existence of universal ethical principles, as well as the existence of autonomous professional ethics. Nowadays, in these countries, the evaluation of ethical implication in psychiatric care is difficult, contradictory and controversial. Romanian psychiatry has experienced great hardships due to the denial of the right to free conceptual commitment and of the right to express alternative options for the theories or concepts that were not in accordance with the communist morals. The process of replacing a communist regime by democratic structures has created the necessary circumstances for the uncensored circulation of information and opinions. In its turn, this fact has made some things possible, such as the debate of some aspects pertaining to psychiatric abuse, coercive psychiatric care and the access to health care in general. One may say that, the acquisition of ethics by all the people involved in the medical profession, as well as the development of their propensity towards ethical reflection are essential for a post-totalitarian society.
Taking into account the fact that the legislation of our country is undergoing a process of transformation, in psychiatry the interest is particularly focused on the ethico-legislative aspects pertaining to involuntary hospitalization, the compulsive treatment and the limits of confidentiality. We are not allowed to disregard the fact that the scarcity of health care budgetary resources obviously influences upon the quality of psychiatric care. Furthermore, the drugs shortage makes it necessary to adopt a rapid way of treating the patients with the risk of a paternalistic attitude. In addition to that, we can count the general attitude of dependency on centralized decision-making, which persist among Romanians. Under the circumstances present in Romania, new adjustments of psychiatric care are highly necessary, both at the medical and the community level and at the legislative one.
Roxana Chirita and Chirita Vasille, University Psychiatric Hospital "Socola", Romania
A historical survey of the social, moral and philosophical dimensions of medical ethics will bring out its deep implications in contemporary Romanian psychiatry. Considering the fact that it entails the acquisition of a personal system of moral values on the part of the individual, one can with good reason question the extent to which it is possible to influence moral reflection after a fifty years long acquisition of communist moral values. Even if we exclude the economical and political aspects, inducing a correct perception of the ethical problems with the population presents a difficult issue. If we take into account the existing possibilities, we wonder whether ethics should be presented as a virtue or as an obligation. The idea of virtue involves moral life and integrity. For fifty years communism endeavored to impose a set of false moral values, many of them utterly inconsistent with the cultural tradition of our people. The rejection of religion and the encouragement of agnosticism were probably the most twisted of all the pseudo-moral coordinates outlined by the communist system. In the beginning, the population was almost unanimous in opposing the new principles. Little by little, opposition turned passive and people gradually learned how to dissimulate their real beliefs.
The problem of suicide, although the existing statistics do not show alarming levels of the phenomenon, has caught the attention of specialists from various fields (medicine, sociology, philosophy, theology). The current concern with this topic might well be the consequence of the fact that it used to be taboo, very much like the problem of AIDS. A genuine member of the socialist society would not resort to suicide. What reasons could one have had to be disappointed or desperate? Still, if one attempted or committed suicide, it had to be that the person was mentally ill. On the other hand, Orthodox Christianity which constituted a refuge during communism, and under whose sway the Romanian people have evolved, has greatly influenced folklore, moral consciousness, inter-human and social relationships and the way of life of the ordinary people.
The attitude of the community towards a person who has committed a suicidal act is not rigid, repudiator or unforgiving, but a compassionate and understanding one. However, the idea of making a rational choice between life and death is strongly rejected . Granting people a "convalescence period", the necessary time for regaining the traditional values would therefore be far more preferable than imposing new obligations and norms, even if they are ethical ones.
Zbigniew Szawarski, University of Wales, Swansea, UK
"The patient may well be safer with a physician who is naturally wise rather than one who is artificially learned" said T. Fox, a former editor of The Lancet. I try to explain why it is so. The concept of the art of healing is intrinsically connected with the idea of healing powers. There are at least three possible approaches to that idea and all of them have different implications for the problem of medical wisdom. These are: the idea of the healing powers of nature, the idea of the healing powers of science, and the idea of the healing powers of the physician's personality. Having critically discussed those ideas I sketch an ideal of a wise physician as someone who has a particular kind of knowledge, good judgment, and self-trust. Medical knowledge is certainly a necessary condition of being a wise doctor but it is not the sufficient one. And this is why patients generally prefer to seek the help of "naturally wise physicians".
Bethany Spielman, Southern Illinois University, USA
One of the signs of the expanding influence of bioethics in the US is that courts increasingly use bioethics opinions when deliberating about legal issues. Most frequently, courts have used the opinions of institutional ethics committees, the opinions of the American Medical Association's Council on Ethical and Judicial Affairs, and the opinions of expert bioethicists. The use of institutional ethics committee opinions and opinions from the AMA has rarely been questioned by commentators, while the use of ethics experts is highly controversial. This paper compares these three types of bioethics input into the US legal system, their treatment by the courts, and makes recommendations about how bioethics can appropriately contribute to the development of judge-made law in the future.
Arthur Zitrin, New York University Medical Center, USA
This paper will deal with medical ethical issues related to the death penalty in the United States, and also world-wide to the extent that data from Amnesty International and other sources are available. A brief history of death penalty legislation in the US will be presented followed by a summary of statistics on capital punishment in the 38 states where it is legal: number of executions and persons awaiting execution, methods employed, races of murders and victims, opinions about the death penalty of the public, law enforcement officers, criminologists, and others. These will be compared with data from other countries in the western world and elsewhere.
The ethical principles enunciated by the American Medical Association and other national and international medical organizations governing physician participation in the death penalty will be presented. The ethical responsibility of the physicians role during the several steps in the judicial process and after a condemned prisoner is on death row will be the major focus of the presentation. The pros and cons of the ethical propriety of 1) psychiatric examination to determine the mental competency of the condemned to be executed and 2) the treatment of a mentally incompetent death row inmate with be discussed. Reference will also be made to recent state laws which have defined physician participation in executions as not being the practice of medicine. Ethical implications of these rulings will be considered .
Bernadette Tobin, Plunkett Centre for Ethics in Health Care, Australia
Article 11 of the Universal Declaration on the Human Genome and Human Rights, which was adopted unanimously and by acclamation by the General Conference of UNESCO at its 29th Session on 11 November 1997, says: 'Practices which are contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted. States and competent international organizations are invited to co-operate in identifying such practices and in taking, at national or international levels, the measures necessary to ensure that the principles set out in this Declaration are respected.
This is only one of several occasions on which the Declaration makes use of the concept of human dignity. It speaks of recognizing everyone's inherent dignity, of everyone having a 'right to respect for their dignity', of the fact that that dignity 'makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity', that no one should be subjected to discrimination based on genetic characteristics which is intended or has the effect of 'infringing human dignity', that research should not prevail over respect for human dignity, that the benefits of advances in human biology, genetics and medicine concerning the human genome should be made available to all with due regard for human dignity, that states should take appropriate measures to raise social awareness of fundamental issues relating to the defense of human dignity which may be raised by research in biology, in genetics, in medicine and its applications, that the International Bioethics Committee of UNESCO should identify other practices such as germ-line interventions which could be contrary to human dignity, etc.
In the first part of this presentation I shall outline several competing conceptions of what it is to respect someone's dignity as a human being and then see if it is possible to identify the particular conception of human dignity which is at work in the Declaration. In the second part I shall consider the sense in which the reproductive cloning of human beings can be said to be 'contrary to human dignity'. In the third part I shall consider whether all germ-line interventions ought to be considered contrary to human dignity in this same sense.
Robert B Leflar, University of Arkansas School of Law, USA
Since the 1996 publication of my article "Informed Consent and Patients' Rights in Japan," several significant developments have advanced Japan's recognition of patients' rights in ways singular to Japanese culture. These developments include: 1) the Tokyo High Court's 1998 recognition of a Jehovah's Witness's right to truthful information about the surgical team's intention to transfuse her in an emergency; 2) the Diet's enactment of a law permitting recognition of brain death and subsequent organ transplantation in very limited circumstances; and 3) a report from a Ministry of Health and Welfare study committee advocating legal recognition of patients' right of access to their medical records. This paper evaluates the significance of these developments from a cross-cultural legal perspective, with emphasis on the special characteristics of Japanese society that have encouraged unusual variations in the conceptual and practical growth of patients' rights in Japan.
Wolfgang Goetze-Claren, University of Munich, Germany
The objection of the German Government to sign the Convention draft paper on Biomedicine does reveals the "slippery slope" which the profession enters violating the higher standard adopted for the embryo in this country. The representatives of Germany for the European parliament in Strasbourg therefore, have demanded the following added corrections of the draft:
1. to reconsider withdrawal of nutrients and liquids in hopeless cases. 2. to ban the term of "human-like creature" and other things degrading in language, 3. to exclude growth of tissues and organ harvesting from the fetus, unmistakably, 4. to ban consuming and wasteful research on the embryo, 5. to prohibit the patenting of the human gene which will be anticipated as long as eugenic selection is not outlawed, 6. also, intervention on incompetent patients for the benefit of third persons without advantage to the object or donor for research must be ruled out.
The respect for the single individual is paramount and precedes the basic rights for freedom in research and science. For a universal base of the "Ethics 2000" we cannot propose simple morality of science and progress but we ought to wait patiently until social opinion and judgment eases the old traditional boundaries and sensitivity in view of modern life's rapid adaptation to a renaissance of enlightenment mellowing the taboo zones at the beginning of life and it's end.
Derek Morgan, University of Wales, Cardiff, UK
The idea that I might 'own' my body while yet being prevented from doing some things with it has been an important organizing principle in arguments about, the development of modern medical law. Similarly, much recent academic literature proceeds in part on the basis that because an individual is an 'autonomous' being it is not the proper role of the state to interfere in what is done consensually to that person, certainly if there is no harm to others.
Where is the basis for the arguments that I own my body? What purpose or purposes are or might be served by a recognition that my body is my body?
The thesis of this paper subjects these and related claims to critical examination. It adopts and uses arguments showing both limitations and misunderstandings of Lockean concepts of ownership of property (Hyde) and Kantian notions of autonomy (Kass) to suggest that in a fundamental my body may be mine to use and enjoy but not to 'own.'
If we admit of the notion of body ownership, that is (another) invitation to engage the (further) juridification of social spheres (Teubner), a further twist of the role of law in the 'risk society' (Beck). If, however, we conceive of law's responsibility to defend some myths by which a community chooses to live, that law might act as a community's nomos (Minow, Ryan and Sarat), we may conclude that law might be required to act as a bulwark against the spread of technological rationality (Beck) rather than as at present its alter ego (de Sousa Santos).
Naomi Gale, Ashkelon Regional College, Bar-Ilan University, Israel
What is feminism? Feminism is advocating for equal rights for women in all arenas. But these rights, even it granted, can be exercised on]y in conducive protective environments; thus natural rights for safe, secure and dignified life are prerequisites for the realization of citizen equal rights. This paper highlights the problematic nature and the magnitude of the phenomenon of violence in intimate relationships in Israel, emphasizing the need for human rights for battered women. It argues that this problem is universal and thus societies must deal effectively to rid themselves of it, outlining techniques used to help battered women to achieve their rights and with some suggestions of how to improve the situation. In Israel in 1997 100,000 women have lodged complaints with the police, but most women do not get out of abusive situations because they feel they have nowhere to turn to. The result - every year 15-20 women were killed by their husbands.
It has become fashionable to advocate for human rights for the poor, political prisoners, refugees and terrorists, and recently for abused children. We are shocked when we learn about violence against them, but violence against women was scan as an integral part of life, an intimate problem. The key to the problem is to a large extent the way women are perceived by men and by themselves. In the traditional world, women are viewed as mens' property and thus have limited rights. In the modern world women are viewed as the weaker sex, and thus need the protection of men. In both , women are placed in a subordinate position to men.
In the last few decades, however, there has been growing recognition that battered women is a serious social problem, a notion that is already bringing turmoil and anomic due to conflicts of interests resulting from changing norms, mores. There are two ways to bring change and help battered women to realize their human rights: by societies (governments) and individuals (men and women). (a) On the macro level - by redefining gender relationships, by changing cultural ideologies emphasizing equality as the main theme. This is a long and very gradual task and its success or failure can be felt only after several generations. (b) On the micro level - for change in the immediate future, governments must lake an active pan by legislation - to protect women and make sure these are implemented; by funding programs to rehabilitate the victims as well as the abusive partners so they can, if they choose, continue to live together without violence. There is a growing need to particularly educate battered women to understand their basic human rights for a life free from violence, and be more assertive so they can conduct a dignified and secure life for them and their children. Thus the demand is for active intervention to achieve this goal. Educating all members to take an active part to change their environment, to help change the abusive situation in which battered women live. Thus, there is a need to persuade them that the change will better not only the battered women's situation but will contribute to the betterment of society at large to make it a better place to live in.
Godfrey Tangwa, University of Yaounde, Cameroon
Increasing awareness of the importance of the biodiversity of the whole global biosphere has led to further awareness that the problems which arise in connection with preservation and exploitation of our planet's biodiversity are best tackled from a global perspective. The 'Biodiversity Convention' and the 'Human Genome Project' are some of the concrete attempts at such globalization. But, while these efforts are certainly very good at the intentional level and on paper, there is, at the practical level of implementation, the danger that globalization may simply translate into Westernization, given the Western world's dominance and will to dominate the rest of the globe. How is 'global bioethics' to be possible in a world inhabited by different cultural groups whose material situation, powers, ideas, experiences and attitudes differ rather markedly and who are not, in any case, equally represented in globalization efforts and fora? One index of the pertinence of this question is that talk about biodiversity, biotechnology, biotrade etc. is being increasingly matched by talk about biopiracy, biorade, biocolonialism etc. In this paper I will attempt to explore and develop these and related very general concerns.
Peter Whittaker, National University of Ireland, Ireland
There is, at present a major debate concerning the use of genetically manipulated crop plants. The debate tales place at three levels: 1) Is it ethically acceptable to transfer genes between species? 2) Does the growth of genetically manipulated crops pose a risk to the environment? 3) Are there dangers associated with eating genetically manipulated plants? The first question is clearly an ethical one; the others are scientific questions which, depending on the answers, could have important ethical aspects. The paper will present the contributor's assessment of the considerations involved.
Donald M.Bruce, Society, Religion and Technology Project, Church of Scotland
In Europe, two biotechnology policy decisions have left behind a serious gulf between the public and policy makers - the passing of the EU Directive on biotechnology patenting and the importing of insegregated and unlabelled genetically soya and maize from the USA. The first was a debate conducted over 10 years in which the pressures of industry, political expediency and EC treaties eventually combined to pass legislation which was widely opposed by many ordinary people in Europe, and in the end especially the genetic disease sufferers whose needs the Directive was claimed to be supporting. The Directive leaves unresolved major issues on where (and even if) ethics comes into the development of biotechnological products. In response to such concerns the EC cites the official position of EU Treaties which leave ethical issues to member states. Over genetically modified foods, however, the EC is currently insisting that the commercial agreement to import soya and maize must override the ethical objections of certain member states. Moreover, the current EC labeling legislation addresses only scientifically provable DNA, and so misses the point about what concern of many people's wider anxieties over food modification. In combination these two cases suggest a serious failure in public accountability in the current policies of biotechnology, which the policy makers may live to regret.
Shinichi Shoji & Katsuko Kamiya, University of Tsukuba, Japan
An educational program "Clinical anthrolopology" for humanity and bioethics to undergraduate university students has been carried out. This program was conducted by presentation of a concrete clinical case or scene relating to birth, ageing, illness or death, presentation of typical opinions and necessary information, free discussion in small group, reports of summary of discussion, general discussion, then tutors present their own opinion clearly, describing their own impressions. Student attitudes towards use of advanced medical technology was analysed. Significant differences between medical and non-medical student are found. More medical students are conservative than non-medical students over the use of advanced medical technology. This may be due to the difference in stand point of medical and non-medical students. Medical students always thinks of stand point of not only an user but also an executor of advanced medical technology.
Osamu Kanamori, Japan
Avoiding to repeat some tendencies of pluralization of casuistic comments and of the search for the sophistication of jurisprudential analysis, I will focus upon a more theoretical and principle problem relating to the Bioethics. Particularly, I would like to analyze certain French historical documents and make some comments upon the contemporary works about the philosophy of technology. Doing so, I hope to reconsider or to restate them in the frame of bioethical problems, in order to search some possibilities to open a new kind of approaches for bioethics.
Thijs Visser & Henk Verhoog, Leiden University, Netherlands
In discussions about the ethical aspects of genetically engineering animals it is often said by biotechnologists that genetically modifying animals is permitted because it also occurs in nature. With those who are concerned about the genetic manipulation of animals we can notice that ethical concerns are not only formulated in terms of animal well-being and animal suffering. It is argued for instance that the crossing of species barriers is morally wrong because it is 'unnatural', or damages the 'integrity' of the animals. Intuitively many people that these ale morally relevant concepts.
In our research we focus on the latter kind of argumentation. A key concept in animal ethics is the concept of the intrinsic value/worth of animals. This concept indicates that the value of animals not only depends on their usefulness for human beings (instrumental value). They also have a value or a good of their own, independent of their utility-function. That they have this value can not be proven but it is a basic assumption of any non-anthropocentric approach in animal ethics. One could argue that only wild animals have intrinsic value, because they are fully self-supporting and independent of humans. The moral relevance of naturality would then imply that only 'unspoiled nature', without any human interference would have intrinsic value. This view is rejected by the authors. It is based on a dualism between man and nature (cultural versus natural. the artificial versus the natural).
In the paper it will be argued that we are only allowed to speak about the moral relevance of naturalness when 'nature' is defined as the species-specific character, as the 'essential' characteristics of the animal, allowing us to determine what is the 'good of its own' of a particular animal. Some practical consequences of this conclusion will be outlined.
Bethany Spielman, Southern Illinois University, USA
The widespread adoption of the Uniform Anatomical Gift Act (UAGA) promised legal immunity to professionals who complied with its provisions, virtually ensured that, in the U.S., the details of procurement would not frequently be subjected to the harsh light of litigation. When non heart beating cadaver (NHB) procurement became widespread in the 1990's, however, its legal status was uncertain. The practice did not meet the UAGA requirement for brain death. Thus legal immunity was sacrificed. Additionally, in 1997 the Cleveland Clinic was faced with potential criminal charges for conspiracy to commit murder if its protocol were implemented. Secretary of Health and Human Services Shalala ordered the Institute of Medicine to study the ethics of various organ procurement approaches including NHB, but the resulting report did not face head-on potential conflicts between patients' rights to direct end of life care and families' donation preferences, or what should be done if capable patients wished to terminate life sustaining treatment and donate organs. This paper analyzes three features of the "lack of fit" between NHB and U.S. law and argues that the controversy regarding NHB procurement is far from over because difficult legal issues have not yet been squarely faced: conflict between the UAGA definition of death and definitions used in NHB; between the rights of terminally ill patients and the family-dominated approach of the IOM, and between legal prohibitions on assisted suicide and the capable patient's wish to end life support and become an NHB donor.
Julian Savulescu, Murdoch Institute Rsym Children's Hospital, Australia
This paper will review the current status of fetal tissue transplantation as a medical treatment and the possible contribution human reproductive cloning might make to the enhanced efficacy and efficiency of it. Is it permissible to clone an adult human somatic cell to produce a fetus which will be sacrificed as a source of fetal tissue for transplantation? The paper will examine the moral arguments for and against cloning as they pertain to this particular application of human cloning. It will provide a novel argument in favour of the use of cloning to provide a source of fetal tissue for transplantation based on the right of individuals to determine the fate of their own body parts, including their own cells and tissues. This right extends (under some circumstances) both to the proliferation of cells and to their transmutation into other cell types (the Principle of Tissue Transmutation). This argument is based on two controversial claims which will be defended: (1) a fetus which is the product of the cloning of a person's somatic cell is best described (ontologically) as that person's own tissue up until a certain point in fetal or post-natal development and (ii) that a person has a strong claim that medical technologies be developed and deployed to manipulate that person's own tissues to provide a source of transplantable tissue for treatment of that person's disease. The central claim of this paper is that it is not only permissible to use cloning technologies to create fetuses which will be sacrificed as a source of organs for transplantation, but that it is morally required that we develop and use cloning technologies in this way.
Wolfgang Goetze-Claren, University of Munich, Germany
After ratification of the law on organ-transplantation in November 1997 more than 200 parliamentarians voted against decision-making for explanation by surrogate. Increasing numbers of the 600 law makers rejected the equalization of brain death with the death of man. Despite the great PR-campaign sponsored by the government, organ donation decreases due to the report of the European transplant agency in Leyden (NL) for organ allocation. The altruistic consent of the donor to accept his prolonged dying process-prolatio mortis-docs not represent euthanasia. The patients decision to be treated for dying-dysthanasia-made after full demonstration of his/her path to death covers the constitutional rights. thus, the autonomy of the patient remains the prime rule. does he want to let nature run it's course, or, does he wish to be ready for explanation. the original paper analyses a rationale of future developments for organ substitutes as well as the turn in medical science to demote brain death. then, Sir Eccles' hypothesis on neuron activity in coma effluere will be scrutinized and compared to recently advanced results in neurophysiology of the limbic system and midbrain rest activities during brain death. Should such focal scanning be verified to mediate experiences, then, even so unrecognizable, bioethics cannot ignore the vague neuro-memories outside of our comprehension. We must account for them. certainly, the donor on the operating table will be covered under full anesthesia. It is one mission of IAB4 is to analyze and rule on the irresistible scientific progress and the theory of cognition and last not least to protect the organ giver on his way to death.
Tsuyoshi Awaya, Tokuyama University, Japan
The sale of human organs is generally considered ethically unacceptable. It is prohibited in most countries. Despite this, the whole human body is gradually becoming a commodity. Most kinds of human tissues for transplant, for example, bones, skin, cardiac valves, tendons, blood vessels, etc. have already, in substance, become a commodity. These tissues have price tags in the name of "processing fees." Human cells and genes for research and educational purposes have already become commodities. They are openly sold by catalog and on the Internet, listed in the same way as a rat or a guinea pig. How about organs? They are halfway to becoming commodities. For example, the cornea, which is usually categorized as an organ, has become one in substance. In a market economy, everything on earth has the potential to become a salable commodity; human organs, tissues, cells and genes are no exception. Both the development of technology, especially medical technology, and the progress of the market economy cause the commodification of the human body. °°We are entering a new era in which human body parts are becoming commodities available for distribution. How should we respond to this? It seems that almost the only response available is to calmly recognize this new reality. This means that we need new societal values and morals. From a legal aspect, it is inevitable that current legislation prohibiting organ sales in the world will be reconsidered in the future. It seems that it is necessary to make worldwide uniform regulations to encompass the commodification of the human body and the sale of organs.
T. A. Cavanaugh, University of San Francisco, USA
Conceptual and ethical issues arise from a current U.S. movement to improve care by learning from errors. E.g., do errors differ from adverse events or complications? I argue that errors differ from adverse events insofar as adverse events are known specific identifiable possibilities before the medical intervention while the ways of error are myriad. Moreover, I argue that a physician cannot be said to err if there was no way to avoid the bad effect -- or the only way of avoiding such an outcome would be regarded by all as impractical, say by testing everyone for rare allergies. I argue that error, by definition, concerns outcomes that are practically avoidable. For example, if one discovers that a drug has an interaction that one could not have known of or that one could not have known of without rendering the practice of medicine impractical, then one has not erred insofar as one has not strayed from a path that one could or should have followed.
These conceptual clarifications have ethical implications. For example, it is appropriate for a physician to apologize for a harmful error and to ask the patient's forgiveness insofar as personal inadvertence caused harm. In the case of an unavoidable bad outcome, however, while it would be humane to say "I am sorry", it is mistaken to ask for forgiveness, for one has not gone astray. In both cases it is right to compensate the patient for serious harm while still significantly distinguishing the two cases.
Yutaka Tejima, University of Tsukuba, Japan
Malpractice is one of the important reasons in Japan that medical personnel have to encounter law and the legal framework, as it is in so many countries. As for the number of malpractice suits in Japan, approximately 500 cases have been filed every year recently. In addition, the number of cases is now increasing every year, and the situation surrounding medical personnel is getting worse than before. Various causes have been pointed out already for these increases in Japan, but one of the principal reasons is that many Japanese think the right to receive medical treatment is a matter of course, because a fairly long period has passed since the national medical insurance system was established. In this context, equality in medicine is strongly supported in Japanese society.
However, it is a very recent topic in Japan that people began to allege the rights of patients in the practical aspects of medicine. Therefore, the awareness of rights is very much different from persons to persons, or institutions to institutions. Nevertheless, the rights of patients in Japan began to expand steadily through many cases, consumer protection activities, information disclosures on the aspects of medical affairs in response to recent trends of deregulation, and so on. Patients' rights in Japan are now in the process of drastic change. Malpractice must be seen as a severe infringement of patients' rights, and it is necessary to cope with and adjust to such a serious breach of rights.
This report first describes the legal framework and trends to malpractice in Japan as a premise, then introduces the difficulties and problems that hold under the present system. After examining some foreign systems against medical injuries, I assert that the construction of a new legal system related to medical accidents should be considered seriously in Japan. Some discussion will be added about whether such a new system construction may cause side effects to the present activities of expanding patients' rights in Japan.
Tamayo Okamoto, Hiroshima Prefectural College, Japan
Informed consent has become a well-known concept in the practice of modern medical ethics. It has provided a tremendous impact on the physician-patient relationship even in this country where benevolent paternalism has been the norm for centuries. Although cancer disclosure still remains at the level of about 309%, citizen's actions are increasing to make the medical relationship and information dissemination as democratic as possible.
However, it seems that the practice of informed consent is not very well established when the team approach is used. In this case not only physicians but also professionals of health-related disciplines, such as nurses, therapists, medical technicians and social workers participate. Who provides the patient with the team's decisions is not clear. Information sharing among the team members is not completely open.
I would like to point out some on-going issues and problems surrounding the team approach. 1) The relationship of an attending physician with other team members. Is the physician placed at the center or the hub of the circle surrounded by allied-health professionals? Then where is the patient for whose very care the circle is formed? 2) If the patient is at the center with the physician being one of the circling party, then what is an appropriate relationship between the physician and other health professionals? 3) What is the proper practice of informed consent in these relationships?
Tanida Noritoshi, Hyogo College of Medicine, Japan
Whether truth disclosure would harm patients was studied using the Functional Living Index-Cancer (FLIC questionnaire in cancer patients, Methods: Truth-disclosed patients with cancer (TD group) and truth-concealed patients (TC group) were asked to answer 22 FLIC questions. Results were compared with those with irritable bowel syndrome (IBS group) and other gastrointestinal diseases (OGD group). Results: Average FLIC scores were the same between the TD and IBS group and between the TC and OGD group. Statistically significant difference was found in 4 FLIC items: "Discouraged about life", "Uncomfortable today" "'Pain disrupts activity" and "How much nausea". The IBS group showed the worst FLIC scores among the former 3 items. The TD group was more likely to think that their daily activities were disrupted via pain or discomfort than the TC group. On the other hand, incurability of cancer worsened 10 FLIC items, among which incurability was independently associated with the deterioration of FLIC in "Family disruption and Cancer-related pain". The incurability of cancer, and lack of truth disclosure, negatively affects the quality of life of patients. Thus, truth disclosure could be performed without fear of being cruel or harming patients.
James Dwyer, New York University, USA
Do doctors and societies have an ethical obligation to provide health care for illegal immigrants? Do they have an ethical obligation to provide health care for medical travelers - people who travel to another country for the sole purpose of getting medical treatment? In my paper I try to discuss these questions in a critical way.
To begin, I give examples from the United States, France, and Japan; and I try to place these examples in the context of recent economic and political developments. I then consider the arguments that have been advanced in favor of restricting access to non emergent medical care for illegal immigrants. I criticize the discourse and the framework of these arguments. But I also criticize those arguments, in favor of providing care, that are based on appeals to physicians' ethics and human rights. In particular, I argue that the discourse of human rights obscures important issues and conflates cases that should be distinguished.
I try to show why the issue of medical care for illegal immigrants should be considered in terms of the role of public institutions in community life. I argue that illegal immigrants are moral members of the communities in which they reside and should be in included in the scope of public institutions. But I suggest that the issue of providing care for medical travelers is different and requires a different discourse and framework.
Jozef Glasa, J. Bielik, J. Dacok, M. Mojzesova, J. Porubsky, A. Stefko - Institute Medical Ethics, Slovakia
Bioethics in Slovakia was born after the so-called Velvet Revolution of November 1989. The fall of a totalitarian regime and the ideological despotism of 'Marxism-Leninism' opened the door for a new freedom and exciting possibilities of progress and development. The need of a profound reform of the economical, social, cultural, and scientific life of the country was felt as an indispensable prerequisite of a prosperous rise of the society. In the field of medicine and health care this transition was marked by an unprecedented interest in the old and novel ethical problems, brought in by the development of medicine itself, and by the necessary reforms of the national health care system (HCS).
Interestingly, the development of bioethics in SR, since the very beginning, was marked by some connection and input to the process of HCS reform (especially via the Central Ethics Committee established at the Ministry of Health SR in 1990). This included also an ethical review of proposals of the new health legislation. The connection became less prominent after the year 1993.
Different traditions of the medical ethical thought were present in the SR 'bioethics field', contributing to its marked pluralism and (sometimes) to the heat of certain public health care ethics debates. The biggest group of 'bioethicists' consisted of the intellectuals engaged in the former 'underground' (among them the members of various Christian denominations, 'humanists', 'democrats', 'liberals', 'conservatives', 'neo-conservatives', etc.). The other group were the university teachers in humanities - former Marxists-Leninists, trying to transform themselves into 'democrats', 'liberals', or 'Christians'. The proponents of some 'ultra-modern' or 'ultra-conservative' views and ideologies, mostly coming or being considerably backed from abroad, completed the scene. It was further enriched and cultivated by the intellectual input of the 'western' philosophical thought, mutual scientific and information exchange, increasing scientific and educational collaboration, and, with some delay, gradual developments in the systemic legal harmonization (towards the legislation of the European Union). Soon on, the original input of the research and study efforts in the field, as well as the work of national research institutions and various professional and scientific organizations became visible.
It might be concluded, that bioethics in Slovakia - developing gradually its educational and research facilities (e.g. Institute of Medical Ethics and Bioethics in Bratislava); own and shared communication channels (e.g. journal Medical Ethics & Bioethics; growing inputs to the professional and general media information space); and its 'working institutions' (i.e. ethics committees) - has established a specific, non-negligible position within the contemporary transformation processes of medicine and the national health care system.
Frank J. Leavitt, Be Gurion University of the Negev, Israel
Are decisions to lower the lower the age of women for whom to perform pre-natal testing for genetic syndromes ethical decisions or economic decisions? Are the considerations behind policies on living wills and DNR ethical or economic? Can medicine be ethical if one patient receives better treatment than the other simply because the former has more money to pay? This paper will examine current trends towards privatization in health care, and the philosophy of free-market medicine, asking whether economic considerations in clinical decision making are compatible with ethics.
Li Jining, Guengxi College for Health Administrative Cadres, China
The unfair allocation and low effectiveness of health resources are global problems. The main reasons for these are as follows: 1) Medical treatment is prescribed as a means of making money, 2) The existing medical management mode is deficient 3) The aging of population 4) The change of disease patterns and 5) The abuse of high technology. the following steps must be taken so that the phenomenon of the unfair allocation and extravagance of health resources could b abolished: 1) Changing the traditional sense of health care, 2) The health policies shall be based on fairness and high effectiveness, 3) The unreasonable health security system shall be reformed and 4) The self-health-care system shall be further improved.
R.N. Sharma, National Chemical Laboratory, India
Idealistic and affluent sociologists and politicians, as also sometimes errant economists, well meaning or otherwise, often praise the virtues of poverty. The phenomenon recurs continuously in developing societies and workers' paradises, and seems to have some kind of spiritual connotation and blessing of various religions, cutting across ethnic and geographical barriers. Culturally as well as biologically, however, merits of fortitude in bearing vicissitudes of deprivation seem few. Acquiescence in inescapable, forced poverty may be condonable. Voluntary hardships, except for individual spiritual or medical uplift, cannot be justified, most certainly not on ideological or (pseudo) intellectual grounds. Ecstasy, and Ethics ascribed to poverty, are myths emerging from misperceptions by ill informed, albeit perhaps well meaning spiritual or sociological workers. The best commentators, and judges of poverty are the poverty stricken themselves, not unconcerned, or at least not directly affected, aloof observers with romantic notions of fortitude.
Shinryo N. Shinagawa, Hirosaki University, Japan
After a short introduction of population policy in Japan, five topics will be presented focusing on bioethical issues. They are: 1) Legalization of induced abortion and its consequences in Japan. 2) Human rights, mother's rights and embryo rights in Japan. 3) Reproductive medicine and ART (assisted reproductive technologies) in Japan with special attention to IVF (in vitro fertilization) and AID (artificial insemination by donor's semen) in Japan. 4) Contraception in Japan with particular comments to Dr. Ogino and oral contraceptive pills. 5) Characteristics in decision-makings, especially relating to health issues, among Japanese people: phenomenally Euro-American but essentially and/or genetically family-centered and communal.
Alison Brookes, Deakin University, Australia
Drawing on qualitative research projects exploring women's experience of prenatal ultrasound and prenatal genetic screening (PGS), the paper explores the way that ultrasound as an obstetric rite of passage obscures women's lack of information regarding the test. The research compares the popular image of ultrasound examinations with the medical and ethical questions raised by both the test and current practice procedures. In the paper I will compare the changing historical role of prenatal ultrasound to its current routine obstetric practice with the implementation of other PGS testing, and draw out the implications of this for participants in the programs.
In interviews with women undertaking prenatal ultrasound, amniocentesis, chorionic villi sampling and maternal serum alpha-fetoprotein testing, the need for information which is inclusive of both medical and ethical issues became apparent. The way that women make choices about testing is severely restricted by a lack of easily accessible information. For testing to continue to be justified on the basis of increasing women's choices, women's experiences and expectations of testing must be more adequately accommodated and lack of access to information remedied.
The research projects found women's relationship to prenatal ultrasound and other PGS testing far more multi-faceted than that commonly presented in either medical or bioethical literature. Exclusion of women from the medical and bioethical debates surrounding prenatal ultrasound and PGS impacts on the ethical validity of the programs and restricts women's autonomous reproductive decision-making.
Sjef Gevers, University of Amsterdam, Netherlands
Termination of pregnancy is a matter of controversy in many, if not all countries. In most of them, legislation in this field has only been adopted after extensive public debate and political struggle between 'pro life' and 'pro choice' positions. The delicate compromise laid down in most abortion laws may be at risk due to the increasing possibilities to detect untreatable fetal abnormalities, in particular when such conditions are detected (for instance by means of ultrasound) in a later stage of pregnancy. While under varying restrictions most laws leave at least some room for termination in the first, and sometimes also the second trimester of pregnancy, third trimester abortion -when the fetus is considered viable - is usually prohibited. Nevertheless, the detection of structural, incurable abnormalities after 24 weeks may be a reason for some women to request termination of their pregnancy. The knowledge of carrying a baby which will fail to survive after birth (or which will survive for a shorter or longer period with serious and lasting handicaps) can be an unbearable burden. Should these women be forced to continue their pregnancy and to carry their baby to term? Or should doctors be allowed to act upon the woman's request in such a situation? This paper discusses the recent advice of a Dutch government appointed commission. In its report, the commission deals with the ethical and legal aspects of the issue; it proposes that the existing criminal prohibition of third trimester abortion be kept in place, but elaborates rules of careful medical practice which would allow for such termination in a limited number of cases without the threat of criminal prosecution.
Lourdesita Sobrevega-Chan & Rosena D. Sanchez, Ateneo-Social Research Office, The Philippines - Ethical Issues that Emerged in the Study on Abortion and Reproductive Health Among Filipino Women
Ken Daniels, University of Canterbury, New Zealand
Third party reproduction is dependent on gametes (semen or oocytes) being available. Almost all clinics providing services report difficulty in recruiting sufficient numbers of men and women who are prepared to provide their gametes for other, usually infertile, couples. Professionals in many clinics frequently argue that it is essential to provide financial recompense as an incentive to recruitment and in a number of countries this has been the practice for some years. Recently the British and Canadian Governments have moved to ban the system of payment for gametes. This has lead to heated debate between the policy makers and the practitioners.
Practitioners usually argue for a "market" or pragmatic approach to issues of supply and demand and if the demand outstrips the supply then you encourage the supply by offering more money as a reward. Policy makers in Britain and Canada are challenging this position. In New Zealand most clinics have been recruiting semen donors without payment for some years. This paper will explore the reasoning being used by policy makers and seek to clarify the extent to which ethical considerations are playing a part in these deliberations.
Minakshi and Jayapaul Azariah, University of Madras, India
A questionnaire was prepared with 30 statements/issue based questions and opinions covering the following areas of interest: (i) general (ii) Human (Natural) resources (iii) Commercial (iv) Reproduction and infertility (v) Medical research for (a) individual organs and genes (b) for individual organ (c) cloning and diseases and (d) for organ transplantation (6) surrogacy (7) Personal and (8) ethical.
The Indian community, and the Tamilian community in particular, considers that "Birth of a Woman" is the natural and preferable method of human reproduction. Cloning is considered to be an artificial mode of reproduction. The paper distinguishes the meaning of various terms like " natural ", "artificial" ," normal" and " preferable", and discusses the validity of describing cloning as "asexual". In accordance with the paradigm shift in cloning ethics, a new generic term namely "non-sexually sexual" has been introduced, taking into consideration the involvement of both differentiated somatic cell and gamete.
The educated respondents (ER) were aware of cloning techniques and displayed consistency of opinion in regarding a cloned human being as an artificial human being. They also opted to consider surrogate motherhood as not normal and also as procreating a human being by cloning. However, it is interesting to note that the group is willing to consider a person as normal if he/she is born of a surrogate mother. The survey found that this notion has gone deep in the minds of the ER. Such an impression may have originated from the universal use of the term "artificial insemination" with regards to IVF technique. Paradoxical situations have arisen in their minds with regard to social issues such as family ties between a clone and his family and marriage of cloned persons. Before bioethics education 74%. of the ER was opposed (32% disagree and 43%, strongly disagree) to marrying a cloned person. Survey revealed that education is a necessary tool to alter, if possible, such world views.
The survey also revealed that education is needed to bring a change of opinion with regard to the fact that fetal/womb conditions and external environment and culture of a given time will play an important role in bringing a different personality in a cloned person. ER are ignorant or unable to decide 13 of the 30 questions (43%). In these areas it is suggested that strong emphasis in curriculum must be given. Although, the ER agreed for medical cloning and not for reproductive purposes, they were inclined to be commercial if cloning is allowed to be performed. Religious considerations were also dominant in guiding their responses. The paper concludes with a strong plea for developing a global bioethics education to address scientific cultural needs and growing global social complexities. The paper also compares the responses of a similar survey carried out among the general public and students.
David M. Kaplan, University of Toronto, Canada
Canada and the United States of America adopted different policies of intervention vis--vis human embryo research. Why? One explanation may rest in an examination of the history and the values expressed in the respective landmark abortion decisions. A comparative analysis of the abortion law jurisprudence has accounted for these differences in American and Canadian policy.
Before explicating the benefits of conducting research on embryos and the concerns that such research elicits, the moral status of the pre-embryo and its biological development were outlined. The relevant cases and policy documents were analyzed by wedding a neo-institutional approach to policy analysis with DworkinÇs theory of judicial review. This framework provided sufficient leverage for supporting this exploratory investigation. Both the American and Canadian landmark abortion decisions, R. v. Morgentaler (1988) 1 S.C.R. 30 and Roe v. Wade (1973) 410 U.S. 113, underwent substantive examination. Using ideological discourse analysis, the values to which the respective judiciaries appealed were identified. The relevant, subsequent case law collected through legal databases was used to fine-tuneÇ the values identified in R. v. Morgentaler and Roe v. Wade. While a right to abortion exists in United States, the Canadian judiciary has not identified such a right. Moreover, while protection of (potential) human lifeÇ was found to be a highly institutionalized value in both countries, protection of reproductive healthÇ was not as highly institutionalized. By institutionalizing these different valences, the respective legal systems differentially constrained the North American policy makers who examined how the state should regulate human embryo research.
R. Alta Charo, University of Wisconsin, USA
The argument from potentiality undergirds most calls for treating fertilized eggs and embryos as members of the moral community, equal to babies in their entitlement to protection. Cloning offers the prospect of transforming nearly every kind of human cell into an embryo, thus begging the question -- is every cell now sacred? If not, what arguments are left in the way of embryo research?
Adnan Hyder, South Asia Net - Ethics of cloning: a South Asian perspective
Derek Morgan, University of Wales, Cardiff, UK -
The emergence of demands for supra-national regulation of bio-medicine and the identification of appropriate fora have come to occupy the international community in the last decade. Possible responses to those demands, an understanding of intellectual forces which have produced them and the mediation of differences of form and substance comprise what is here called biomedical diplomacy.
This concept of biomedical diplomacy is located within a wider theoretical construct, identifying shifts in the nature of philosophical practices, and the development and deployment of new forms of regulation which both supplement and represent a challenge to the increasing juridification (the danger of the uncritical and unreflective appeal to and of law) of social and technical practices. (Teubner, Galanter, Beck).
The unprecedented speed of change in medical practices and the radical uncertainty and anxiety which has been an accompaniment to this, has produced new, [self-producing] uncertainty. Biomedical diplomacy attempts to identify and negotiate the 'tragic choices' (Calabresi) which have to be constantly (re) negotiated. First, it examines how modern biomedicine requires the re-negotiation and regulation of existing boundaries of risk, technology and power, and how it attempts to achieve this at the level of individual state. This it does at a time of enormous geo-political, economic, and epistemological upheaval; a global concern with ethics appears to have become the defining stigmata of the late C20th (Hobsbawm); pluralism is replacing old certainties (Bauman, Beck, de Sousa Santos); the generic 'patient' is disappearing (Wolf, Williams, Doyal). Biomedical diplomacy, negotiating the tragic choices, is in part about ensuring that we retain a belief that we shall be privy to what the outcomes of individual choices will be (Strathern).
Deborah Diniz, Brasilia University, Brazil
In the 1970s and 80s, during the first years of the appearance of Bioethics, the principialist theory, which is based on four principles (autonomy, justice, non-maleficence and beneficence) was considered by a lot of researchers to be adequate to represent Bioethics. During this time, to report on Bioethics was the same as to discuss the principialist theory. The practical exercise of Bioethics took on the simplification of the principialist theory. The four principles became a kind of indispensable tool for everyday work of the bioethicists. Critical evaluations about principialist theory were limited to the addition of other principles to the model, or as a measurement of the social impact of each principle in different contexts. It is therefore a recent theoretical movement that suggests a revision in the idea that principalist theory has the potential to be universalized. From the last decade began the first studies which pointed out the impossibility of universalizing the principialist theory. In addition to this, the mass of the critical movement about the principialist theory can be used to analyze the joint relations that exist between theoretical production in Bioethics. Brazil, as a peripheral country in producing theories in the realm of Bioethics, has a strong tradition of importing theories from other, more central countries. In this article, at the same time, we will analyze the Brazilian case, and demonstrate how the acritical cross-over of bioethical theory, in particular, the principialist theory, can provoke a cultural shock that has the ability to disturb the theatrical and practical development of the discipline in peripheral countries.
Robert Baker, Union College, USA
From its birth in 1947 at the Nuremberg Tribunal and in the UN Declaration on Human Rights, through later statements by Council of Europe, the Council for International Organizations of Medical Science (CIOMS), the World Health Organization, and the World Medical Association, international bioethics has been justified in terms of "fundamental" principles to which civilized societies "all agree" and accept as the foundations of their "moral, ethical and legal" norms. Today, however, "fundamentalism" is thought to have collapsed under a variety of multi-cultural and postmodern critiques that reject as philosophically untenable the notion that certain "basic' or "fundamental" moral principles, or human rights, are universally accepted in all cultures. This paper attempts to justify international bioethics in terms of the contractarian tradition, as reinterpreted by David Gauthier and John Rawls. It is argued that international bioethics can be rationally reconstructed as a negotiated moral order that respects culturally- and individually-defined areas of non-negotiability, more popularly known as "human rights." It is argued further that if rights are reconceptualized as areas of non-negotiable primacy, the new conception is flexible enough to reconcile the ideal of human rights with the genuine insights of multi-culturalism and post-modernism. The paper closes with an analysis of the controversy over exempting experimental trials of inexpensive treatments for preventing the perinatal transmission of AIDS from the CIOMS sponsoring-country ethical standards rule.
T. A. Cavanaugh, University of San Francisco, USA
Currently, there is widespread agreement within the U.S. medical community that female genital mutilation (FGM) is not an acceptable medical practice and that physicians ought to reject requests for clitoridectomies, or other forms of female genital mutilation. At the same time, there is relatively widespread agreement that infant male circumcision is acceptable. This is puzzling, for infant male circumcision has little to recommend it other than custom. Moreover, it harms the male infant in ways comparable to FGM.
Thus, it is not clear that the U.S. rejection of FGM is not merely arbitrary in the light of the U.S. acceptance of infant male circumcision. Either there is a significant difference between the two practices, or the two practices are morally on a par. If the practices are morally on a par, one may not consistently reject the one while accepting the other.
I note that the benefits of infant male circumcision are speculative at best while the harms are downplayed or ignored. I argue that there is not a significant difference between FGM and infant male circumcision. I conclude that the U.S. medical community ought to take its rejection of FGM as an opportunity to reconsider its currently mistaken and unjustifiable acceptance of infant male circumcision.
Naoko T. Miyaji, Kinki University School of Medicine, Japan
Although cultural justifications of certain practices are always found in bioethics, they often capture only the mainstream values of a culture, leaving minority voices unheard. They also tend to emphasize differences between cultures rather than similarities. This "representation problem" of culture has been much discussed in anthropology and cultural studies, but little in bioethics. In this presentation, I examine images of "America" portrayed in the literature of Japanese biomedical ethics as an illustration of the representation problem. "America" means the United States, and many Japanese formulate their arguments by contrasting America and Japan. Images of America and their effects are analyzed using the concepts of orientalism and occidentalism. I discuss the ideological use of culture in bioethics and the future direction of cross-cultural bioethics.
Chee Khoon Chan, Universiti Sains Malaysia
This paper discusses the overall thrust of health sector development in Malaysia as laid out in recent statements of policy makers and planners. In particular it examines the articulated rationales for the corporatisation and privatization of public sector healthcare, and describes the political economy of anticipated reforms in healthcare financing and re-organization of healthcare delivery. The general trend now seems clear -- services essential to the cohesiveness, resilience and reproduction of society (social reproduction), once the preserve of the state (and the family) is increasingly perceived as offering opportunities for profitable investment by the private sector.
Privatization as a panacea for the alleged ills of the public sector, in fact threatens a system that is relatively inexpensive and that has on balance performed well in delivering primary health care to the vast majority of the population. The market as a rationing device is not an acceptable solution, on ethical or efficiency grounds, for the healthcare needs of the Malaysian population, including the health problems of an aging population and the increased expectation and demand for costly high-technology medicine made available by unceasing biomedical research. It is ironic that the abandonment of a communitarian ethic in social services is proceeding most rapidly in a country like Malaysia, which has been one of the most vocal proponents of "Asian" values.
Stellan Welin, Centre for Research Ethics, Goteborg University
Recently, development in biomedicine has opened the possibility of using organs and cells from animals. Xenotransplantation using cells seems to be near its clinical use; xenografts using organs appear more complicated. By using genetically modified animals it is however hoped that the immunological barriers between species might be overcome thereby providing a vast amount of new organs for potential recipients.
Clinical trials of xenotransplantation involve many problems. Some are similar to all trials of new experimental invasive treatments where prospects for the first recipients are not so good. However, there are an extra dimension due to the risks to the public. A moratorium for clinical trials of xenotransplantation has been discussed in many countries. There is, it is argued, a risk that retroviruses might pass from the animal organ, tissues or cells to the human recipient and infect other humans.
This papers explores ways of reacting to these risks ranging from not using xenografts at all to starting with clinical trials. It is discussed what the appropriate level of prudence is in a situation where there is a shortage of human organs and how to establish what is "enough safety" from serious viral infections. It is argued that we should not have an either - or choice but instead discuss what restrictions and monitoring could reasonably be imposed on recipients. Obviously, under a perceived great risk of dangerous viral infections, restrictions could be so severe that it would (seldom) be in the potential recipients interest to have a xenograft.
Furthermore, it is argued that the case of xenotransplantations demand introduction of legislation on monitoring and restrictions to the recipient of xenografts which will overrule some of the traditional research norms of research ethics such as the right to exit from a protocol.
Acknowledgment: This work has been supported by the EU-biomedical program, grant BIO4-CT97-2242.
Mairi Levitt, University of Central Lancashire, UK and Darryl Macer, University of Tsukuba, Japan
A stimulus passage on research into pig to human transplantation was taken from 'New Scientist' and given to young people aged 11 to 18 as part of a wider study of attitudes to biotechnology. Open questions asked young people 'should this research go on?', 'How can we decide?', 'What do you think?'. The original research was for the Biocult project supported by the European Union and involved children from Spain, UK, Finland and Germany drawn from two or three schools and including boys and girls with mixed social class backgrounds and educational abilities in three age groups, 11-12, 14-15 and 16-17. At the instigation of Darryl Macer the research was reproduced using schools in New Zealand and Japan, with Hiroko Obata. The total sample size is 1350.
Overall in all countries a majority of young people (52%-67%) thought the research should go on although there were differences by age and sex. The paper examines the justifications young people gave for their opinions and draws comparisons with the degree of trust they had in scientists and opinions on other applications of biotechnology such as the so-called slimming gene, which a majority opposed. Although most of the young people would not have had any scientific knowledge of xenotransplantation they were able to formulate the social, ethical and practical implications of the research. In their replies they covered all the arguments found in the literature from issues of safety and animal rights to possible psychological effects on humans and animals and the desirability of prolonging life (e.g. Nuffield Council report 1996). Whilst the academic discussion of xenotransplantation has been dominated by considerations of safety for humans, assuming that technology assessment is a technical exercise, those opposed to the research tended to start with different assumptions. Their concerns would not be addressed by the assurance of safety; as one girl wrote 'just because we can do something does not mean that we should'.
A. Krishnika and Jayapaul Azariah, University of Madras, India
Organ Transplantation is a proven modality and the method of choice for treatment of many organ diseases. A major turning point arose due to the improvement in technical abilities, life sustaining machinery, and accurate tissue typing. The limitation is only due to the scarcity of donated organs. As the techniques are advancing, the lay understanding of Tamilian community is of interest. A questionnaire with 25 questions covering areas such as (i) General (ii) Brain death (BD) (iii) Cadaver (iv) Xenotransplantation (v) Multiple organ donation (vi) Cloned organs (vii)Advantages (viii) Disadvantages (ix) Personal and (x) Ethical, revealed that the Educated Respondents (ER) were aware that other techniques such as gene therapy (GT) and molecular medicines can cure diseases. The idea that OT can cure diseases completely was not acceptable to 50% of the ER. But 66% of them agreed to donate their body or organ after death and 22% were ignorant. That education in this area need to be carefully planned was indicated by a 7% decrease in those who agreed and corresponding increase in the "I don't know" category. After proper education the acceptance level showed an increase from 70% to 74%, with regards to considering brain death (BD) as complete death. While the ER agreed for the substitution of animal organs to save human life, they disagreed that the animal qualities will be transferred to human beings in such xenotransplantation. A safe middle path approach was expressed in the case of performing clinical trials with first obtaining a complete understanding of animal genome. The ER had inhibitions about receiving substitution of organs either from a cadaver or BD persons or from pigs or baboons (xenotransplantation). About 76%, expressed that donating a kidney to a close relative is safer. After a brief ethical consideration the level showed an increase to 90%. But they considered a person with the loss of a kidney as abnormal. Such consistency of opinion and attitudinal change may indicate that education and social considerations are a necessary corollary to bring social and academic awareness in OT among the educated. It is difficult to enforce the Organ Transplant Act effectively in India as showed by an increase in response from 60 to 85%. Field literacy in this area can be improved through education. The survey revealed that literacy of the informant is an important factor. Any attempt to formulate educational material should be very carefully designed as there was a very sharp increase in two categories (I don't know - from 8 to 13 - and strongly disagree - from zero to 13). Religious views (Hindus, Khoranic restrictions and Roman Catholic doctrinal supremacy) were also found to influence organ donation. ER were conservative in their views. That ethically minded considerations govern OT was revealed by the fact that they rejected the idea of organ transplantation from one's own clone.
Sung-Suk Han, Catholic University Nursing College, Korea
This primary study was done to develop an ethical guideline for organ transplantation, a life-saving treatment which helps improve the quality of life. This study tried to identify the current situation in Korea, in terms of ethical considerations in organ transplantation. This study collected basic data in organ transplantations, in the hope that procedure of organ transplantation could be developed that would be fair to both organ donors and recipients. The immediate goals of this study were : 1) to identify staff in charge of organ transplantation and their jobs in the hospital, 2) to survey whether there exists a Hospital Ethics Committee(HEC), 3) to research what considerations are formally taken in selecting recipients, and 4) to accumulate data on how consent from donors is currently obtained. The study used a survey questionnaire and received responses from 31 hospitals out of 45 hospitals where organ transplantation are being done. Organ transplantation coordinators were found in 16 hospitals, but the job description varied among hospitals. The survey showed that all 16 hospitals with an HEC that health care personnel unnecessarily dominate the committee. The study notes that HECs should be vitalized by recruiting, as members, ethicists, theologians, patients, guardians, as well as the general public outside of the hospital. The study revealed that in selecting recipients the hospital takes into account ABO blood type, histocompatibilty, age, waiting time, and level of patient compliance. Finally, it was shown that in the cases of living donors the transplanting hospital seeks a formal consent, whereas there are no common consenting practices established for cadaveric donors. The study concludes with three proposals. First, a nationwide institution responsible exclusively for procurement and distribution of cadaveric organs for transplantation should be established. Second, we should rebuild the national health insurance system so as to have costly organ transplantation expenses substantially covered. Last, but certainly not least, there is a need to emphasize the HECs commitment to prepare proper ethical guidelines for organ transplantation in general.
Octavi Quintana, European Commission
The opinion was an initiative of the European Group of Ethics. Human tissues are used for a wide variety of purposes including diagnosis, therapy and research. The most common source of tissue is the removal from the body as part of diagnosis or treatment. It may be affected tissue or surplus tissue. Tissues are also frequently removed from dead donors. Unlike organs, which cannot be conserved, tissues can easily be stored for long periods in tissue banks where tissues are stored processed, registered and distributed.
The main ethical problems concerning human tissue banks are .related to the safety of the tissues, the protection of both the donor and the recipient and the commercialization. Safety is an important issue because some illnesses can not be detected by the usual testing as the CJD has shown. The best way to ensure the safety of the human tissue is to have a strict control of the source. Protection of the donor and the recipient are ensured through appropriate informed consent and respect for the privacy of the persons involved. Commercialization of human tissues is a difficult issue because tissues are obtained by donation in most countries . On the other hand for profit industries operate in the processing storing and distribution of human tissues.
The opinion of the EGE is that safety is an ethical imperative and therefore all efforts should be made to protect the safety of the tissues to be used in other persons. Testing of the tissues, control of tissue retrieval supervised by a physician in licensed premises, and surveillance mechanisms. are required Informed consent from donors is mandatory except for the deceased donors in those countries operating on the basis of a presumed consent. Specific provisions are envisaged for fetal tissue , placenta and surgical residues. Anonymity should always be respected . Tissue donation should be promoted .. Tissue banks should monitor the safety rules uniform throughout Europe. Tissue banks can not accept tissues that not fulfill ethical and safety standards. In principle tissue bank activities should be reserved to non profit making institutions. When for profit institutions make some processing the same licensing monitoring rules are required.
William Ruddick, New York University, USA
Many physicians regard hope-giving as a primary duty, even when requiring them to lie to patients about dire diagnoses or prognoses. Many Western bioethicists criticize such deception as paternalistic violation of patient autonomy. Hope-giving, however, is more complex, morally and otherwise, than this standard example and criticism represent. I shall focus on common conflicts of the hopes of physicians, patients, and family members--conflicts that often reflect not only conflicting interests, but also differing degrees of optimism, self-deception, and concepts of death. And I shall consider various principles for reducing such conflicts of hope and the need for deception.
Toni Suzuki Laidlaw & Sue Sherwin, Dalhousie University, Canada
We shall argue that we can understand some of the differences in how doctors interact with patients by identifying the dominant metaphors that structure their thinking about their practices. For example, in the West, some specialties, such as surgery, seem committed to an understanding of practice as one of "rescuing" patients from dangerous situations; others, such as family practice and psychiatry, construct their approaches around a metaphor of counselor and confidante. These different ways of thinking of their tasks support different ways of interacting with patients, We shall examine some of these different styles of communication associated with competing medical metaphors and argue that there are important ethical differences between these distinct approaches. Hence, ethicists should attend to the metaphors that shape physicians' understandings of their practice, for improved communication and more effective strategies of obtaining consent may well depend on changing physician's unconscious expectations about their roles as captured by these diverse metaphors. We shall also raise the question of how different cultural understandings of medicine (e.g. Eastern) influence different styles of physician-patient communication.
Bengt Brylde, Goteborg University, Sweden
There are several fundamental goals of medicine, e.g. to promote health and to prevent premature death. One of these fundamental goals is to combat (reduce or eliminate) different kinds of suffering. But what duties does medicine have toward those who suffer, and how far should medicine go in the relief of suffering? Or more specifically: If we assume that resources are unlimited (this is to avoid all problems concerning how scarce resources are best distributed): What kind (or kinds) of suffering should medicine try to combat, and how (in what ways, or by what means) should it try to do this?
For example, should medicine restrict its attention to "health-related suffering" (e.g. physical pain, or sufferings that are caused by disease, injury or other maladies), or should it try to relieve other kinds of sufferings as well (as long as they are "strong enough")? And if a certain suffering happens to belong to "the domain of medical responsibility", how should medicine try to relieve it? For example, should Prozac be offered to people in crisis, e.g. to someone who suffers intensely from having lost a child? Should plastic surgery be offered to people who are notoriously unsatisfied with their facial features, and should the health care system offer assisted procreation to those who "need" it, or should one instead help these people to adjust to the situation? And may medicine ever help suffering people to commit suicide?
Tom Buller, University of Alaska, USA
The subjective approach determines the value of a person's life in terms of that person's desires and preferences. On this approach, the value of the person's life is self-determined. Life can be said to be going well only if it conforms to the individual's subjective conception of value. The objective approach determines the value of a person's life in terms of an objective list of benefits and harms, and an objective determination of quality of life. On this approach, the value of a person's life is other-determined. Life can be said to be going well only if it contains elements that are thought to be objectively good, or lacks elements thought to be objectively bad. Thus on the subjective approach, patient preferences determine best interests; on the objective approach, best interest determines the value of patient preferences. If the above analysis is correct, then a number of important conclusions can be drawn regarding the treatment of incompetent patients:
(i) The quality of a person' life can be determined by whether desires are fulfilled or unfulfilled. Since a person's desires could be fulfilled even if the person is unaware of this fact, it follows that the quality of a person's life could be harmed even if the person is unaware of this fact. Hence the loss of competence need not invalidate the patient's prior subjective interests.
(ii) Once we have adopted the subjective approach, we are not justified in switching to the objective approach simply because we think that the patient's choice is irrational and/or harmful; for the distinction between the two approaches, like that between competence and incompetence, is not one of degree but of kind .
(iii) We are justified in overriding the patient's subjective interests if: (a) these interests are internally inconsistent; (b) there are certain objective values that are always consistent with subjective interests; (c) there is a higher-level approach that allows the balancing of the subjective and objective approaches.
Grahame Bulfield, Director, Roslin Institute, Scotland
There have been tremendous advances in molecular biology and genetics in the last ten years; these advances have more recently been applied to farm animals. In my talk I will outline the different technical issues, the potential uses of the technology in both biomedicine and agriculture and discuss a number of animal welfare and ethical issues that have been raised.
Donald M.Bruce, Society, Religion and Technology Project, Church of Scotland
For several years before Dolly, the Church of Scotland's Society, Religion and Technology Project (SRT) had already been already engaging with Professor Ian Wilmut of the Roslin Institute, in a working group on the ethics of non-human genetic engineering. From this interaction, SRT Project's director presents a uniquely informed perspective on the ethical issues of animal and human cloning and the potential uses of nuclear transfer technology. The firm ethical basis can be given to outlaw internationally any attempt to clone human beings, both on principled and consequential grounds. Issues of control and risk are more significant than genetic identity as such. The use of the technology in animals and for medical research is more open and complex. Different circumstances are suggested in which animal cloning may and may not be used, on ethical grounds. The medical applications are still highly speculative, some relatively straightforward, others likely to pose more difficult ethical problems. The generation of cloned tissues or cells could have many medical benefits. Its ethical acceptability may depend on the methods used, for example whether these had involved the use of human embryonic tissue for non-reproductive purposes, or the use of animals deliberately deficient in certain organs. Continuing close public scrutiny is clearly required of this fast developing area of research, to establish acceptable uses from unacceptable.
Ruth Macklin, Albert Einstein College of Medicine, USA
The response to the news in late February, 1997, that Dolly, the sheep, was cloned from an adult sheep prompted a world-wide response from individuals, governmental spokespersons, and ethics commissions. Political leaders and legislative bodies throughout the world issued statements prohibiting human cloning or at least calling for a voluntary moratorium. The Human Reproduction Program of the World Health Organization (WHO) convened two meetings in Geneva with representatives from many different countries. The first meeting involved mostly participants from North America and Europe, whereas the second meeting focused sought views from representatives of countries in Asia, Africa, Latin America, and Eastern Europe. The major points emerging from these two WHO meetings are summarized in this presentation.
R. Alta Charo, NBAC, USA
Within 90 days of Ian Wilmut's announcement about Dolly, the U.S. National Bioethics Advisory Commission had issued a report calling for a temporary moratorium on human applications aimed at making babies. It did not, however, condemn human embryo research nor pronounce cloning as intrinsically right or wrong. This presentation will describe the deliberative process, and suggest that for pluralistic democratic societies, the moral rightness or wrongness of an act cannot be determinative of appropriate policy responses.
Octavi Quintana, European Commission
The opinion was produced at the European Commission request after the lamb Dolly was born. From the point of view of basic research this result is important. If repeatable it may allow greater insight into the ageing process, how much is due to cell ageing, and whether or not is reversible. Such work may also increase our understanding of cell commitment, the origin of the cancer process, and whether it can be reversed. Concerning the applications there is a wide range of potential uses specially in the field of animal cloning. There is also research involving human nuclear transfer with potential therapeutic implications, for example the development of appropriate stem cell cultures for repairing human organs. It could also provide insights into how to induce regeneration of damaged human tissues. . It has to be recognized that any attempt to develop methods of human reproductive cloning would require a large amount of human experimentation. If adult cells were to be used as nuclear donors there is a serious concern about the potential risks of such technique.
The opinion of the European Group of Ethics is that research of cloning ,in laboratory and farm animals is likely to add to our understanding of biological processes and hence may contribute to human well being. It is ethically only acceptable if carried out with strict regard to animal welfare. Cloning of animals is only justified when methods and aims are ethically justified and when it is carried under ethical conditions. Concerning human implications, reproductive cloning, that is to say, any attempt to produce a genetically identical human individual by nuclear substitution from a human adult or a child cell should be prohibited.
The ethical objections against cloning also rule out any attempt to make genetically identical embryos for clinical use in assisted reproduction, either by embryo splitting or by nuclear transfer from an existing embryo. Multiple cloning is also unacceptable. Strict provisions should be added to the already existing ones for research on human embryos in those countries in which such research is allowed.
Ruth Chadwick et al. HUGO Ethics Committee
Bioethics has both academic and public-policy making aspects. The HUGO Ethics Committee has recently been asked by HUGO Council to examine the issue of cloning. A subgroup of this committee has prepared a draft statement dealing with different types of cloning. There are not only different techniques involved in cloning, such as somatic cell nuclear transfer and embryo splitting, but also different purposes, such as reproductive cloning and therapeutic cloning, including using cloning techniques to avoid mitochondrial disease and developing tissues for transplant. In addition to the ethical dilemmas raised by these developments there are new conceptual issues such as the possible reinterpretation of the term 'embryo'. This paper will outline some of the debates around the issues that have occupied and continue to occupy the Committee in trying to reach a consensus.
Boris Yudin, Russian Academy of Sciences, Russia
Worldwide discussions about cloning of human beings show us, among other things, that there are some tensions in interrelations between politicians, on one side, and scientists, on another side. Sure, there are many distinct positions inside both of these groups. However, it is possible to discern general patterns in these positions. The first point worth to mention is the fact that in this case society in general (through politicians) has not only will, but also means of pre-reaction (not just of after-reaction, as it was in the vast majority cases earlier) to this possible new scientific and technological challenge to prevailing moral values. Additional Protocol to the Convention on Bioethics of the Council of Europe with prohibition of human cloning is one of the examples. But comparison of discussions on recombinant DNA in the 70-th with this current developments allows to conclude that in the last case reaction on the part of politicians seems too hasty - in the sense that they did not wait for reaction of the scientific community. The community, on its part, was not able to quick and consolidated reaction. As a result we can see overt conflict between politicians and scientists. So, there is a problem in interrelations between science and society - lack of the institutional mechanisms for resolution of the conflicts of interests which are not unusual for these interrelations.
Renzong Qiu, Academy of Social Sciences, China
Hasna Begum, University of Dhaka, Bangladesh
When we think of ethical issues we generally refer to those which are in one, or other way related to the 'human kind.' 'Human kind' here implies 'All humans irrespective of sex, religion, race and all other distinctions between humans imposed by external forces.' From this point of view, any bioethical study is basically involved with and is also based on ethical issues which are universally related to humans of all kinds.
A Global Bioethic consequently is not merely a conceptual entity. It is a reality as well, since bioethical studies include a minimally and universally acceptable concept of human life as it ought to be globally. In any global bioethic those which are common elements in various religions and cultures are not to be ignored. But, at the same time, any value, either religious or cultural, that demeans human dignity, worth, purpose, etc. ought to be ignored in the study of any global bioethical issue. If this proposal is allowed to dominate the field of bioethics, then a 'Global Bioethics' in the truest sense of the term, would become a reality.
Gregg Bloche, Georgetown University, USA
Fifty years ago, accounts of horrific abuses by health professionals during World War II helped to inspire the Universal Declaration of Human Rights. In the time since, a variety of health-related norms, including the requirement of informed consent to treatment and research, have become basic tenets of international human rights law. The bioethics movement has both borrowed from the growing body of health-related international human rights law and contributed richly to it. U.N. and regional human rights commissions and courts, NGOs, and national organs like South Africa's Truth and Reconciliation Commission and bioethics councils and commissions in the U.S. and Europe are building a robust body of international law and ethics bearing on medicine and health. My presentation will trace these developments, and their tangible benefits for vulnerable people, with an eye toward the guidance that international human rights law and values offer today on a variety of controversial bioethics issues. These issues include the content of the oft-asserted right to health, the role of informed consent in clinical trials (e.g. AIDS vaccine research) in poor, third world nations, conflict between clinicians obligations to the state and to their patients, and the close ties between socio-economic and health status.
Helga Kuhse, Monash University, Australia
The idea that the permissibility of an action or an omission depends on m agent's intention has played an important role in traditional Western ethical thinking. This idea has also found its way into the law, and plays a significant role in determining whether a medical end-of-life decision is permissible or not - whether it constitutes unlawful 'euthanasia', or a lawful instance of 'allowing a patient to die'. The question of the moral significance of the agent's intention in acting in ways that will foresee ably lead to death may be irresolvable. There are, however, powerful reasons why the focus on the doctor's intention should be abolished in the regulation of medical-end-of-life decisions. Comparative data from the Netherlands and Australia suggest that a public policy approach which, in the ease of competent patients, focuses on the patient's consent, rather than the doctor's intention, is more protective of the rights and interests of patients than the traditional approach.
Dan Brock, Brown University, USA
Two central objections to physician-assisted suicide (PAS) and voluntary euthanasia (VE) are that they involve the intentional killing of patients and that they would be subject to unacceptable abuse in practice. Moreover, both these objections are assumed not to apply to, and so to distinguish PAS and VE from, forging life support. First, I shall argue that some forgoing life support intends the patient's death and that some PAS does not intend the patient's death, though VE and some PAS do intend death. PAS and VE cannot be distinguished from forgoing life support on the basis of physicians' or patients' intentions. In addition, I argue that intending a patient's death is not always morally wrong or incompatible with physicians' roles. Second, I shall argue that typical safeguards proposed for PAS or VE extend far beyond those in place for forgoing life support, and so make them less, not more, subject to abuse in practice than forgoing life support. Yet no evidence suggests that the practice of forgoing life support is now being unacceptably abused. Neither of these two objections to PAS and VE is successful.
V. Manickavel, College of Medical Sciences Bharatpur, Nepal
In the modern medicine as more and more technologies are applied in the treatment of the diseases, death is becoming treated as alien. This, at times undermines the dignity of the person very much. Death is often looked as opposite of life but in reality it is part of it and birth and death are mere two sides of a coin sandwiching sustainability in the middle. In the continuos cycle of motions life brings many sustainable changes and it is the nature of it. In that death is also important in bringing those continuos changes. The occurrence of death is not limited to any time frame of life stages of genesis, expansion and spent. Strangely enough death also needs the participation of the other bio-organisms to complete as the co-operation is extended in the other stages. However, humans, due to the possession of virtues like love and compassion mystical and moral values and transcendental ethical values do not practice in the act of bringing death of other lives. It is out of compassion and good samaritanism of medical profession the symptoms of infection and other distress are relieved and the fellow beings are helped to live with out sufferings. Similarly any other killing to bring death of fellow beings is considered as barbaric and condoned by the society. Discussions are presented here, where, there are many contra-actions which raise the questions the possession of unique virtues. Is it because of non-human traits still present in humans many of the modern bioethical problems occur?
Cao Kai Bin and Zhang Kai Tai, Shanghai Medical University, China
In Shanghai there are many terminal cancer patients suffering from pain. At the same time, they continue medically futile treatment. Some of them actively request stopping life rather than continuing to live with terminal cancer, and be so overwhelmed as to wish one were dead. Because of the pain and refusal of requests for euthanasia, some patients choose suicide. Not only the patient but also the relatives request action that will enable the patient to die at the time the patient desires. facing the request or euthanasia, cancer specialists appeal for legalization of euthanasia as fast as possible. the basic reasons for making a law permitting euthanasia in Shanghai include: 1) People have the right to live and die. At the same time, people have the right to live better and die comfortably 2) Euthanasia extends the ideals of revolution for progress into the realm of death. Euthanasia embodies the highest socialist cultural and ideological drive. The legalization of euthanasia in Shanghai, the biggest city in China, symbolizes a new step towards realizing socialist cultural and ideological goals. 3) Socialist humanitarianism also appeals for euthanasia-- death by choice. Euthanasia doesn't conflict with the physician's responsibility to treat patients. however, Mercy killing enables the patient to hasten an inevitable death that would likely be slow and agonizing. It's the most humane for patients who wish they were dead and further develops Socialist humanitarianism. 4) It's good for the society. Euthanasia ends the life that would otherwise have continued for some time. Futile treatment increases not only the patient's unnecessary pain but also the national and individual financial burden. Euthanasia helps to eliminate the patient's pain and lowers the cost. 5) The right of death by choice doesn't go against the law. the law in China stipulates that people have the right to life and health. Euthanasia lets a patient decide how to die comfortably rather than how to live. 6) Many people in Shanghai hove accepted euthanasia. according to these six reasons, we propose that shanghai take the lead in making the law concerning euthanasia.
Ingmar Persson, Lund University, Sweden
Peter Singer has argued that nothing done to a fetus before it acquires consciousness can harm it. At the same time, he concedes that a child can be harmed by something done to it when it was a non-conscious fetus. But this implies that the non-conscious fetus can be harmed. The mistake lies in thinking that, since existence can be intrinsically bad for a being only if it is conscious, it can be harmed only if it is conscious. In fact, its being harmed only implies that it could have been conscious (and led a good life).
Peter Singer, Monash University, Australia
In bioethics the concept of the person has come to play a significant role. But which beings are persons? Is it possible that some non-human animals are persons. I shall argue that there are some nonhuman persons, and that on the evidence so far available, the best candidates for this status are the Great Apes - chimpanzees, bonobos, gorillas and orangutans. I shall consider the significance and implications of an attribution of the status of person to these nonhuman animals.
S.Omer Sheriff & D.S. Sheriff, VMKV Medical College Salem, India
It is high time one analyses the use of animal experimentation not on ethical principles but on a practical rational basis. One need to understand whether use of animals provide us with precise and purposeful data; are there any other alternative methods which are cheaper and better; even if animals were to be used is it possible to reduce the number of animals to get the same results. One could carry out a critical analyses by understanding a case study. for example take the example of odontological experiments carried out in Sweden between 1947 and 1951. the main aim of the study was to study the effect of different types of foods containing carbohydrates on the development of caries in humans. the experiment was carried out on patients from Vipeholms Sjukhus, a hospital for the mentally deficient. the mental deficiency varied from severe to minor on e among the subjects taken for the study. Various groups and combinations were tried. The results indicated that the sweets taken in between meals caused caries more and that the sweet that stuck to the teeth caused more caries than others. The studies were carried out scientifically and were of use in promoting dental health in Swedish population. Like any other clinical research every medical research carries along with its beneficial effects some amount of adverse effects. Then this leads to a question whether such studies are ethical? Every biomedical research project involving human subjects should be preceded by careful assessment of predictable risks in comparison with foreseeable benefits to the subjects or to others. Concern for the interests of the subject must always be prevail over the interests of science and society. The studies carried on Swedish patients did not prevail over the experiments is the lack of informed consent of the subjects involved. This creates ethical dilemma asking for proper explanations to answer such questions whether it is morally justified to use animals in harmful experiments as long as these experiments are vital? Whether how one could morally justify the use of human beings in harmful experiments, even when the experiments are vital and the harm is only sight. While attempting to answer questions one could give the explanation that intelligence plays a vital role in deciding who could be preferred for such experiments-animals or humans. If one opts for intelligence then how one can justify the use of mentally deficient subjects over experimental animals. Such ethical dilemmas always create choices. How these choices are made are value decisions. therefore science or medicine both have moral and ethical dimensions. How far one could go on with pursuits of science or medicine- one cannot find a single answer.
62B4 Experimental animals: relevance and impact in institutions of higher education in India
M. Selvanayagam and Francis P. Xavier, Loyola Institute of Frontier Energy, India
Advancement in scientific and bio-technical levels of human history is amazing but the impact of the advancement within oneself' regarding one's own realization of happiness and life-satisfaction is far from realized. One of the factors used very much for biotechnological advancement is animal sacrifice Using animal for sophisticated investigation very often for the luxury of humans such as perfumes and attractive fur-is morally wrong. But in a country like India where religio-cultural values are very much rooted in the history of people and which is intermingled with the daily life of people, the western, commercial and consumeristic concept of advancement brings in dilemma and confusion. Though there is animal sacrifice in some religions, which itself is very much today minimized. sacrificing animals indiscriminately for the advancement of science is to be questioned for its necessity and validity. In a holistic picture, today human beings are not the absolute masters of the world (fauna and flora) in order to subjugate the other living beings, but they are the stewards of the universe taking caring of their natural growth and advancement. Hence humans should be on the forefront not to destroy the animals but to bring up the standard of living without their elimination. At the same time, advancement of human beings is very much desired. This, however. is a challenge and dilemma today. In this context today many an attempt is made to understand the intricacies about physiology and the complexity of genetic-engineering through artificial intelligence such as computer simulation, etc. Such methods could be used already in a institutions of higher learning, even in high schools and colleges. This will not only give skill-training for the students but also instill in their minds and hearts love and respect for animals, in short to the fauna and flora, of the mother earth. This principle and attitude of non-violence is instilled very much in Indian religions and cultures and it is this non-violence propagated by Mahatma Gandhi that got independence for India. And today this principle of non-violence matures into respect for lower form of animals which promotes non-violence to animals even for the advancement of human beings. In the paper the religio-cultural aspects are treated and also alternatives for advancement of scientific advancement in the institutions of higher learning are discussed and methods of implementation proposed.
M. V. G. Ahobala Rao, Sangam Dairy, Vadlamudi, India
Animal Bioethics is a constitution of inter-related ethical principles aimed at making the animal living comfortable, productive , painless and environmentally sustainable not only in the current generation but in the generations to come. Abuse of hazardous steroids and indiscriminate use of antibiotics and pesticides and other chemicals to be avoided as these chemicals may create health hazards in the long run not only for animals but to the mankind and the soil. Steps to minimize liberation of Methane from the ruminants which is about 13% of total global methane production to safeguard the ozone layer. Domestic and wild animals are to be protected against toxicity's from excess levels of lead, Arsenic, Mercury, Fluorochlorocarbons, Fluorine, Cadmium, Chromium, Carbon monoxide etc. and against Zoonotic diseases like Rabies, Bovine Spongiform encephalitis, Rotovirus infection, Birdflu, Viral hepatitis, tuberculosis, Brucellosis, Diptheria and Leptospirosis, are to be viewed more seriously especially in the present context of emerging immunosuppressive problems associated with AIDS and chemically polluted environment. Indiscriminate gene pollution to be checked to protect the originally sturdy and highly productive native varieties of plants and animals. Waste disposal from livestock farms, poultry farms, abattoirs and dairy plants and biological wastes are to be carefully managed to protect not only human and animal health but also to protect the global ecosystem. We should not forget that animal is the dominant partner of our ecosystem and it deserves due attention for its existence, productivity and growths.
Takashi Tsuchiya, Osaka City University, Japan
In Japan bioethics was introduced and established as "Seimeirinri", "Baioeshikkusu", or "Seimeirinrigaku" in the 1980s. Both ecological bioethics of V. R. Potter and biomedical ethics were introduced with some modifications. Early in the 1980s Taro TAKEMI introduced bioethics as a system of new ethics, while Rihito KIMURA presented it as a human rights movement. Since the middle of the 1980s historians and philosophers have regarded bioethics as an interdisciplinary field of research on life sciences and medicine. Even today the meanings of the Japanese terms that represent bioethics, namely "Seimeirinri", "Baioeshikkusu", and "Seimeirinrigaku", have been left ambiguous. This causes misunderstanding and confusion in discussions on bioethical issues. The author proposes broad public discussion on the nature of bioethics in Japan.
Jinling Wang, Zhejiang Academy of Social Sciences, China
According to WHO's definition, health is not only a state without disease, as the traditional conception of health assumes, but a completely physical, mental and social well-being. It implies that women health means women's physical, mental and social well-being, and health is not only a state and result, but also a process of maintaining and promoting health. So women health is not only an existing state of, or a result of action in maintaining and promoting health by women, but also include the recognition of right to health by women and their capability to exercise this right.
In studies and observations of women health more attention seemed to be paid to the state of women health, but neglected the process of maintaining and promoting women health. In fact, in developing countries as well as developed countries women are usually in a passive status in maintaining and promoting their own health, they have to be submissive to others, and their status as subjects are ignored.
Evidence shows that the absence of the status of women as subjects in maintaining and promoting their own health are all-sided. First, male health is considered more important, familial or social resources are allocated to the treatment of diseases that males suffer from and maintenance of male health more than to female. In contrast with boys, when girls suffer from some disease, they are not treated timely and efficiently; in contrast with wives, the feelings of husbands are more concerned. In some rural areas, those diseased women, who never visit doctors or take medicines, but save money for her husband to buy cigarettes or liquors, or for her children to buy food or writing materials, are praised as good women. People usually take them as exemplars of the greatness of mother's love and the virtues of wife, however, they forget they are women who need treatment of their disease.
Secondly, women are often taken as tools of reproduction or meeting husband's desire, but not their own selves: their health is concerned only as they are 'mothers', 'wives' rather they are their own selves. This conception includes a men centered patriarchy as its inner core. In fact, reproduction, taking care for children, and attending their husbands are only part of a woman's life circle, or even its lesser part. Taking women only as tools of household, and concerning women health only for the interests of family will lead to ignoring and neglecting the health of women as human beings.
Thirdly, women are usually considered as 'women', but not 'persons' in full sense. Their health is paid attention to because they are 'women', rather they are 'persons'. So women health is taken more related to reproductive system, such as health issues in menstruation, pregnancy, procreation, contraception, menopause and sex life etc. Instead, general health issues that are related with survival and development of human beings, such as malnutrition, housing trouble, learning pressure, occupational health, environmental hazards, adverse psychological dispositions, crises (like suicide), disability, violence against women etc. are often ignored and neglected.
Fourth, by the long-term working overtime. But the majority of them only compliant that they are too unlucky to be employed in a good enterprise, or as they want to make money, they have to bear hardships, or even they do not know their health is already affected.
Fifth, in the treatment of their illness women as patients are usually not informed. Physicians usually do not tell them, and they usually do not inquire about the diagnosis, etiology, prognosis of their illness and options of its treatment, any alternatives if they refuse take the treatment their physician suggests, and the implications of using new technology etc. Even though they inquire about these, physician may be reluctant to answer or give an answer without details. They usually put their health in the hand of their physician because they are ignorant at medical knowledge and their own body, and the overwhelming influence of physician's authority.
Sixth, women usually accommodate themselves to the norms of health defined by the society. In order to meet these norms women spend lots of money, time and energy to change their own image, even expose them to poisonous chemicals. Those women who challenge these norms and realize themselves according to their own orientations are usually under greater societal pressure. And disabled women suffer from the discrimination from these norms.
The absence of the status of women as subjects in maintaining and promoting their own health had negative impact on their health, crippled their capability for being survival and development in today's competitive society, and produced negative influence on health maintenance and promotion of whole population in a country or in the world as well. It is necessary to establish the status of women as subjects in maintaining and promoting their own health. It includes:
Basically, the absence of the status of women as subjects is a reflection of a social and cultural structure of inequality between men and women in healthcare. Therein lies the crux of the problem: in contrast with men women's status is lower, their voice is weaker, and they are powerless. Therefore, on the one hand, maintaining and promoting women health is a part of women movement. Women's liberation requires women to control their own body, and solve their health issues that are vital and related with their life. On the other, women exercise their right to health, and take initiative in maintaining and promoting their own health only when the general life of women is improved, they are empowered, and their personality is fully developed. These two sides are both very important and interdependent and mutual promoted each other.
Sun Muyi & Sun Liou, The Center for Applied Ethics of Nanjing Railway Medical College, China
During the long history of Chinese culture, Tao culture has described and developed the solemn and stirring humanism of the oriental world. It is the soul of East Asian culture. Tao culture should serve as a bridge between eastern and western culture. It is a priceless cultural legacy to mankind. The comparative study of the benevolence in Tao's "I am the master of my own fate" and Christian bioethics is a very important subject in the comparison between eastern and western ethical culture. It has profound significance in the exchange and intermingling of Sino-western bioethics, for instance in the combination of Taoist bioethics and contemporary Christian biotheology. The "change of nature" in Taoism gives man the opportunity to amend his moral conduct, to take to beneficence and to revert to the right way of life. The establishment of this logic is in consistence with the incompleteness of life. At the time of creation, God intentionally made man of his own appearance and yet left Jesus the time and space for redemption. Therefore the great favor and glory of God and the perpetual Tao to truth, that is only when man has overcome himself and obeys disciplines in truthful loyalty and expectation and in expressing mutual love can he achieve final freedom, is embodied in the Nazareth Jesus. Lao Zi says: that does not deprive anything or any man of any freedom. The Great Tao "does not foist itself on others; it is not willful or conceited, nor is it arrogant, and it does not lay claim to or manage anything." Man can transform, rear, supervise and manage the entire free and vivid world and this pluralistic society. God encourages man to reform himself, including both his body and soul.
Xiao Wei, China
In my view, if we discuss "Chinese Culture", we should do it at least in two ways. First, we should focus on the traditional culture, ethically. Confucian culture that is now still to a large extent influencing people in their thinking and behavior in China Secondly, we should know how the Confucian culture influence today's society after it passed over two thousand years. If we discuss "Bioethics and Chinese Culture", we also need the same two perspectives.
My paper has three parts. The first part will explain how the Confucian culture looks at life and death, body and mind. I will pay attention to the essence of Ren (êm) in Confucian culture and other characteristics of Confucian culture, such as "heavens combine human beings into one, "entirety", and "listen to destiny and nature". These characteristics shaped attitudes of ordinary people toward their life and body. This - attitude has a closed relation Bioethics practice in China.
The second part is based on a sociological study whose title is: Studying Chinese Students' Bioethical Values, I will use two methods: questionnaire and interview. I ask students a series of bioethical questions about organ donation, euthanasia, genetic engineering, organ transplants and abortion. From their responses, I will analyze the influence of Confucian culture and how Confucian culture connects Western and other cultures in today's China I also try to pursue where the students' ideas come from I chose university students as my research objects? Because young students are representatives of the multiple culture. They are sensitive, a changeable, and like to accept new things. From their ideas, we can find the new direction for bioethics development in China. I chose students of Tsinghua University because Tsinghua is one of the best universities in China My student different fields, such as Biology, Psychology, Environment Sciences, and Public Administration They all have a bright future.
Third part is Confucian culture I will criticize some conservative ideas in Confucian culture and its influence, that are not of benefit to Bioethics development I will also address some excellent traditions which we shout carry on. Bioethics originated from western culture. If the theory is expected follow in the Confucian culture, we must find out some correct points of connection the two cultures. My paper is an . I hope to publish my data and analysis results in IAB4 and I also hope to exchange information with scholars from different cultures.
Benfu Li, Beijing Medical University, China
For a long time, Chinese people believed that life was sacred and inviolable. The advantage of such standpoint was to encourage people to take care of life, increase the Chinese population, lay a foundation of medical humanitarianism. the disadvantage was to neglect the social character of life and value of life, over emphasize attention to the quantity of life, inflate the population and decrease the quality of life. Moreover, the theory of the sanctity of life paid much attention to the value of individuals but ignored the whole benefit of society, which affected the development of birth control and just allocation of medical resources. Since the 1950s, china has formed the theory of life-quality because of contradiction between the increasing of population and the developing of society, and the rising of human genetics and molecular biology. the focus on quality of life showed the need of Chinese people to pursue a better life and laid a foundation not only for the policy of population, environment and ecology, but also for contraception, abortion, and genetic counseling. From a standpoint emphasizing quality of life, one may select various methods to prolong, maintain, shorten or end life, and led medical workers to pursue the quality of life as a main aim. Limitations of this emphasis on quality was excess attention to the individual quality of life and no alternation to social value. Now, Chinese people have formed the theory of life-value, which emphasizes the unity of inherent life value and external social value. The external social value is the main factor to judge people's life value, because the quality of life is sometimes inconsistent with social value. so the theory of life-value makes up the theory of life-quality and helps medical workers take cautious attitudes toward maintaining ending patients' life. Overall, the three theories of life showed the change of modern Chinese attitudes toward life. but, we should point out that we don't mean the two former theories are wrong and only the third is right, but that the three theories supplement each other in medical practice. Still, we know that the standpoint of different people is not same and some people will continue for a long time to believe that life is absolutely sacred.
Guomei Xia, Shanghai Academy of Social Sciences China
Prostitution is a profound expression of gender inequality between men and women in the patriarchal society. But according to the commodity-oriented view, prostitution is interpreted as the access to equal choice of free vocation. It is a deception of the theory which was based on the confusion of the commodity-based approach with the humanity-based approach.
Jens Seeberg, WHO, SEARO and Reidar Lie, University of Bergen, Norway
While it has always been recognized that practical on-the-job training forms a very important part of medical education in terms of diagnostics and treatment, the teaching in medical ethics has traditionally been granted little place and been text-book oriented in many countries. There may traditionally have been a tendency to view bioethics as an external element in comparison to technical, clinical skills. WHO/SEARO has supported a multicentre project which is being carried out to develop new training modules based on research on ethical values in seven teaching hospitals in six countries in the WHO South-East Asian Region. The research part of this project covers identification of ethical dilemmas in patient care (qualitative interview study), ethical values in the doctor-patient relationship, and ethical values in resource allocation in health care (questionnaire studies). Based on the preliminary findings, this presentation will identify and discuss the relationship between these different levels of analysis and discuss identified socio-cultural differences across the participating countries of Bangladesh, India, Indonesia, Myanmar, Nepal and Sri Lanka.
Zaman Ara, Sir Salimullah Medical College Dhaka, Bangladesh
Issues of resource allocation in medicine has gained prominence in recent years. There are fundamental uncertainties with regard to how scarce resources should be allocated within the health care system. The World Bank has advocated an approach based on health maximization using Disability Adjusted Life Years. A number of studies have been carried out of attitudes of physicians, managers and patients towards preferences for health states and treatment alternatives There are, however, almost no such studies in developing countries, the countries currently undergoing health sector reform based on the World Bank recommendations.
WHO's South East Asian Regional Office has sponsored a study of physicians' attitudes to ethical issues in health care in five countries in the region: Bangladesh (Dhaka and Dinajpur), India (New Delhi and Vellore), Indonesia, Myanmar, Nepal and Sri Lanka. This is a questionnaire study where 50 physicians in each center are asked about their attitudes towards ethical issues in resource allocation, such as whether they would favor the young over the old, whether they would maximize health benefit or treat those having the worst condition, or whether self-caused illness is relevant when allocating scarce resources. This presentation will give the results of this questionnaire study, carried out in the beginning of 1998, and compare the answers of the physicians in this region with the answers to similar questions carried out in other countries.
John Thomas, SEAHREN, India
In recent years a number of empirical studies have been carried out in various countries on issues in health ethics. Studies have demonstrated that there are differences between these countries with regard to physicians' views on ethical issues. Some have claimed that there are fundamental differences between Western values and Asian values. In the West there are supposedly more emphasis on autonomy and in Asia more emphasis on community. There have been very few studies documenting these claims. In addition, most of the studies have been questionnaire studies. There are very few studies providing the type of contextual data that can be obtained from qualitative interviews.
WHO's South East Asian Regional Office has sponsored a study of physicians' attitudes to ethical issues in health care in five countries in the region: Bangladesh (Dhaka), India (New Delhi and Vellore), Indonesia, Myanmar, Nepal and Sri Lanka. 10-20 physicians have been interviewed 1-4 times in each center. The interviewees were asked to describe briefly their work during the day of the interview and subsequently, whether they saw any ethical problems in relation to patient care during that day. They were asked to describe why the particular problem was perceived to be an ethical problem, and what was the outcome of the problem. The interviews were conducted during the beginning of 1998, taped, and transcribed. This paper will present a preliminary analysis of the study conducted in a teaching hospital in South India.
Zaman Ara, Sir Salimullah Medical College Dhaka, Bangladesh
In recent years a number of empirical studies have been carried out in various countries on issues in health ethics. Studies have demonstrated that there are differences between these countries with regard to physicians' views on ethical issues. Some have claimed that there are fundamental differences between Western values and Asian values. In the West there are supposedly more emphasis on autonomy and in Asia more emphasis on community. There have been very few studies documenting these claims, but a study carried out in India a few years ago does not support the claim of such major differences in values. WHO's South East Asian Regional Office has sponsored a study of physicians' attitudes to ethical issues in health care in five countries in the region: Bangladesh (Dhaka and Dinajpur), India (New Delhi and Vellore), Indonesia, Myanmar, Nepal and Sri Lanka. This is a questionnaire study where 50 physicians in each center are asked about their attitudes towards ethical dilemmas arising from a number of case vignettes. Questions cover topics such as autonomy, paternalism, informed consent and confidentiality. This presentation will give the results of this questionnaire study, carried out during the beginning of 1998, and compare the answers of the physician in this region with the answers to similar questions carried out in other countries.
Caroline CamuÒas, Columbia University, USA
To assist the Vietnam National Nurse's Association in the development of a code of ethics. A Code of Ethics for Nurses will assist in development, implementation, and maintenance of standards of care. Asian ethics are poorly understood in the West; the peoples of Asia have a very different world view. Scant work has been done in comparative ethics. This study will build a foundation for understanding Asian ethics and will provide direction for future studies. It will also provide a cultural specific code for nurses of Vietnam and a model for code development in other Asian nations. Understanding Vietnamese values will assist in development of a Code by clarifying for the Vietnamese their normative values.
This research will be comprised of conducting focus groups in the three regions of Vietnam. Each group will be composed of relatively homogenous nurses. That is, some groups will be faculty, others will be nurses, management, and leadership of the Vietnam National Nurses Association (VNNA). A translator will be used. The discussions tape recorded if possible and will then be transcribed and translated. Two certified doctoral candidates will take notes. One of these students is a Taiwanese Buddhist who will provide invaluable assistance in analysis and interpretation of data. Data analysis will be done; results will be given to the VNNA. The VNNA will be assisted in using this information to develop a Code of Ethics.
Data was collected in August, 1998. Analysis is not yet complete. Challenges in conducting research in developing countries include: (1) access to nurses who are able to articulate a clear focus regarding ethical concerns, discomfort with disagreement in the process of inquiry among peers and a lack of skill in presenting their world view while remaining independent from the Western viewpoint; (2) in-country resources are inadequate to address problems in health infrastructure and evaluation is difficult if a Western perspective is used; (3) enthusiasm to embrace a Western paradigm for nursing - born of a belief that it best represents contemporary nursing practice - rather than development of a body of knowledge unique to the needs in Vietnam. The results have implications for nurses and patients in Vietnam and other countries with cultures based on Buddhism and Confucianism. Practice can clearly and firmly be based on identified Asian values.
Jacob Dahl Rendtorff, University of Copenhagen, Denmark
Genetic integrity is a basic ethical and legal concept in International Declarations on bioethics and biolaw. It is fundamental in UNESCO's Declaration that refers to the protection of the integrity of the human genome as a Common Heritage of Mankind (patrimonies genetique). It is also present in !he Convention of the Council of Europe on Human Rights and Biomedicine that refers to right of every human being to protection of its genetic integrity and identity.
This extensive use of integrity in legal texts concerning the protection of the human genome and the human body manifest the need for a philosophical clarification of the concept of integrity and for an investigation of the question if such a concept at all is applicable to the field of bioethics and biolaw. Against this background the paper will examine the different meanings of the concept of integrity In relation to genetics and the human genome. Integrity has at least two fundamental meanings: I . Integrity as a condition of totality, as wholeness and completeness. It means something undivided in its entirety and in its integral whole. It also implies a condition of not being violated. It is the soundness of an original perfect state. 2. Integrity as a personal sphere: a personal territorial integrity that the individual has self-determination over, indicating some boarders that should not be touched. Leaving aside another definition of integrity as a virtue of moral soundness, that is difficult to apply to the human genome the paper will examine these two definitions of integrity of the humane genome. It will be argued that both concepts are very difficult to apply directly because they rely on a metaphorical use of legal and ethical concepts in relation to the realm of natural science and the natural world. To give the terms meaning, however, it is necessary to refer to a much comprehensive metaphysics of the particularity of the human species and the place of corporeally incarnated human beings in a world of natural teleological processes.
For example, weight-lifters and bodybuilders who used steroids in the hope of gaining a competitive advantage did not enhance their ability to win competitions when steroid use in their sport became virtually universal. High-rise housing built in the 1960s and 70s did not enhance the quality of life of the residents who had to live in 'a box in the sky' which suffered from damp and draughts. Similarly, the enjoyment of spectators of sport has not been enhanced by tennis racquets with man-made fibre frames which result in faster serves and shorter rallies. Genetics has the potential for enhancing our quality of life, however this may be at the expense of the importance of struggle in enhancing 'moral fibre'.
Ray E. Spier, University of Surrey, UK
During the last 4-8 million years some 750-1500 mutations occurred in the genomes of a subset of Primates. The result of these changes was the emergence of the Hominids from the Primates of the Chimpanzee, Bonobo, Gorilla, Orangutan, and Monkey assembly. If left to itself, the Hominid species which exists today, may or may not provide the origin of new species of Hominids. However, contemporary Hominids are rapidly amassing the tools which can be applied to the directed modification of the Human genome. The equivalent number of useful mutations which gave rise to the modern Hominids could be achieved within, say, a few hundred years. How will the existing Humans respond to the emergence of a new species of Hominid? How may we use the information we have about species transformation and substitution to prepare ourselves for future transitions of the Human species? My paper suggests that it may well be time to begin to consider such issues, because if we do not begin such discussions we may well be overtaken be events, which will not be to our, or our descendants', liking.
Anbu Arivukkodi and Jayapaul Azariah, University of Madras, India
The promise of gene therapy in gene related and other diseases has not yet become a reality in Indian biotechnological and medical practices. Traditionally, Indian culture is conservative with cultural, religious and community values. As the benefits of science and modern medicine are becoming more easily available to many people, lay understanding of Tamilian community, of the ethical, legal, and social issues is of interest. A questionnaire (see abstract 1A1) had a total of 24 questions covering areas such as general, personal, ethical, religious and advantages of gene therapy. From the frequency distribution, questions in which 20% of the respondents were either in "I don't know " category or "agree/disagree" category were picked out. Question numbers relating to distinct benefits of gene therapy were the real areas of dilemma. Seven questions out of twenty four (33%) showed mixed responses in that the opinions were equally divided which indicated that these areas required more stress in bioethics education in India. Similarly, 11 out 24 respondents were ignorant/ did not want to express their opinions (I don't know) category. We suggest that these areas must have a strong exposition in curricular material.
Even though, the general consensus of educated respondents (ER) is that the foetus has the right to live, when it comes the question of genetically defective makeup of the foetus, 80%, of the respondents were in favour of preserving the life of the mother and aborting the generically defective child, the indication being that GT can cure such gene related diseases and save the foetus.
The overall analyses of the responses reveal a positive attitude towards gene therapy. The attitude is that GT can cure incurable diseases and may not affect family ties or upset social values (Q.19,20). This shows that the Tamilian community is able to preserve its traditional family and social values by accommodating the benefits of biotechnology. The survey showed that education brings awareness. Before an exposure to bioethics education the participants were uncertain (I don't know) in 11 out of 24 issues (42%). After a detailed programme there was a significant reduction (by 5% or more) in all the questions. The paper emphasizes a need to evolve educational programme in GT with relevance to regional and national requirements as well as global context. The educational programme must be transdisciplinary and cross cultural.
Petra Gelhaus, Westfalische Wilhelms-University Munster, Germany
In science as well as in ethics the word "gene" usually is used without realizing its vagueness, In fact, its morphological equivalent is neither discrete nor continuous, it has according to recent knowledge no clearly definable function or location, no really unequivocal code or limits. In spite of that, it inspires investigators in the whole world to eager activity.
The author holds that the ambiguity of the gene concept does not need to be a disadvantage as far as the speaker and the listener are conscious of it and make clear, which meaning is actually referred to, Nevertheless, it is necessary to be careful with quasi-scientific theories e.g. of egoistic genes and with their implications like curing genes - whatever this may be - instead of persons.
Jayapaul Azariah, President, All Indian Association of Bioethics
India has considered from time immemorial that nature is divine and has spiritual values. India has also practiced the biocentric and theocentric approaches of living in tune with nature. In the survey conducted among academics in a bioethics training course (see abstract 1A1), all respondents indicated that nature has value in itself, similar to the results of the International Bioethics Survey conducted in 1993 in ten countries including India (Macer, Bioethics for the People by the People, 1994). This view is different to the scientific view that nature is amoral and has no intrinsic value in itself. When that Western idea was put forward to them then there was a shift in their valuation of nature. It indicated that deep seated religious values on nature can be altered through education. This inference was supported by their assertion that they neither wanted to sacrifice environmental health for the improvement of human welfare (76 to 90% shift due to education) nor to release Genetically Modified Organisms (GMOs) into the environment (80 to 85%). The respondents have expressed more than one opinion regarding GMOs to produce dairy products and vegetables, meat and medicines. Under no circumstance they did not want to use aborted foetus as human food but after the course of education the strongly disagreed group increase from zero to 56%. Detailed education is needed in this very important area. A certain dilemma is resident in their minds, reflected by the fact that they are willing to change their lifestyle in order to reduce environmental pollution, but they were also ready to pay a heavy price of sacrificing their person health by not changing the use of certain modern amenities such as plastics and refrigeration .
The survey revealed that the cross cultural approach is very necessary in the preparation of educational material in bioethics, indicated by the fact that many respondents preferred to kill a cat if they were to kill one of two animals, in the pairs of earth worm and a cat, or cat and a cow. The paper discusses different Indian world views in ethical decision making.
Ronald Nakasone, Graduate Theological Union, USA
The doctrine of pratityasamutapada (interdependence) represents the ideological content of the Buddha's Enlightenment and as such formed his Weltanschauung. The Buddha simply realized that all things and all beings are mutually dependent. We are responsible to all existence and dependent on the entire universe for our well being, Such an understanding of life dictates the various virtues and ends that Buddhists consider when reflecting on ethical questions.
This paper explores the doctrine of pratityasamutpada as frameworks for ethical deliberations and decision making. To this end, it turns to selective explications of karma that appears in the Abhidharmakosa sastra by Vasubandhu (ca, 400-480) and the doctrine of shih-hsuan yuan-chimu-aifa-me. Ten subtle principles of the unimpeded fusion of interdependence) detailed in the Hua-yen-chingt'an-hsuan-chi by Fa-tsang (643-712). Vasubandhu summarizes the implications of individual actions; Fa tsang examines the relation of the. individual to all other individuals and the universe. This paper sketch pratityasamutpada within the context of Indian and Buddhist thought, proceeds to discuss its temporal and relational aspects, its implications, and its inherent difficulties. The major portion of the paper is devoted to applying pratityasamutpada to the case of Theresa Ann Campo Pearson, an anencephalic newborn, whose parents asked that she be declared brain dead so her organs could be harvested and implanted in others. The reinterpretation and application of the doctrine of pratityasamutpada offers a framework for ethical deliberation and exercise.
Sang-yong Song, Korea
A generation ago Lynn White, Jr. condemned the Judeo - Christian concept of nature for bringing the ecological crisis in the modern era. Since then there have been hot debates on his thesis. An alternative concept of nature from various philosophical and religious traditions will be examined. The emphasis will be on naturalism.
R.N. Sharma, National Chemical Laboratory, India.
In an age of increasing popular support for alternative medicine, appropriate technology, and "Green"/Sustainable farming, it is surprising that human kind seems to be still rooted to irrelevant anachronisms in so far as ethics of all varieties and demeanors are concerned. Ethics stemming from culture are strictly epiphenomena of human civilization. Considering the accouterments and embellishments of the latter, some of these may be controversial, archaic and out of rhythm with modern intellectual perceptions and aspirations. Their continued survival, indeed, mass support and popularity may well be adjudged irrational and inexplicable. Or at best tolerated, if not exorcised as unavoidable hyperbolas of dubious emotional and `spiritual' components of the human psyche. It is much more amazing that we seem to accept without protest, and make no attempts to alleviate or ameliorate the consequences of the tyranny of evolutionary "ethics" (order).This can be overcome and overthrown without recourse to dubious genetic manipulation, or the more unacceptable `eugenics' with its inevitable fascist overtones. What is needed is channeled redirection of human cultural and intellectual thought, transcending geographical and ethnic clausterphobias. Millennia of seemingly erratic games of dice, Eisenstein's fond delusion to the contrary notwithstanding, must now yield to a universal goal epitomizing human values and aspirations as they have quintessentially coalesced after more than 50,000 years of the origin of the noosphere. Alternative/ appropriate Ethics of tomorrow can only emerge if intelligent sentences can be constructed from the noise of the intellectual/spiritual Tower of Babel Humanity is cursed with today. This rational grammar will then be the appropriate alternative ethics, as also a single universal Ethics of conduct and Life so desperately needed by the single sentient species on planet Earth, for failure to evolve such a consensual code may well spell ultimate doom of mankind.
Robert Kneller, University of Tokyo, Japan
It is now possible to test for genetic predispositions to several serious and relatively common adult onset diseases such as breast, ovarian, and colon cancer and Alzheimer's s disease. It is likely that tests to detect genetic predispositions to other diseases will be developed in the next few years. However, it is often not clear who should undergo such tests, and what follow-up care should be provided. In the case of some diseases, the ability to detect genetic predispositions exceeds the ability to prevent or cure the diseases. Therefore, although these tests will help persons from high risk families to assess and, in some cases, reduce their risk of disease; they also pose challenges concerning who should be tested, what counseling services should be provided, what interventions are appropriate, and how to ensure that individuals receive sufficient information (in a culturally and psychologically appropriate context) to make informed decisions concerning testing and follow-up care. Additional issues concern (a) reimbursement for the costs of genetic testing, counseling and follow-up treatment and (b) the privacy of test results and possible adverse effects on an individual's ability to obtain employment and life insurance (as well as health insurance in the U.S.). This paper summarizes the genetic tests that are now publicly available, what additional tests are likely to be available in five years, and the likely demand for such tests in Japan and the U.S. It briefly outlines treatment options in case serious mutations are detected. Finally, it compares the approaches being developed in Japan and the U.S. to deal with the above issues. Although levels of medical care and biomedical research are similar in the U.S. and Japan, the health insurance systems and approaches to genetic counseling and informed consent in these countries differ significantly. This paper analyzes how these differences affect the approaches being evolved with respect to genetic testing.
Matti Hayry, University of Helsinki, Finland
Advances in molecular biology have made it possible to test individuals for potentially undesirable features in their genetic constitution. The motives for genetic testing range from the individuals' own concern for their future well-being, through the interests of employers, insurers and public authorities in the health of their employees, policy holders and citizens, to the wish of parents to control the qualities of their offspring. Since the outcomes of many genetic tests are of considerable interest to the consumers of health-related services, some industrial corporations have, inevitably, responded to the market demand by providing commercial testing possibilities to those who are willing and able to pay for the knowledge.
A prima facie case for market freedom in genetic testing can be based on the principles of respect for autonomy and human well-being. The producers of genetic tests should be allowed to market their services freely and make a profit where this can be done, unless other considerations can be evoked to reverse this judgment. In a similar manner, consumers ought to be able to purchase the services they want, provided that they do not inflict harm on themselves or others by doing so, and provided that their choices cannot be regarded as immoral.
But are there ethical or moral grounds for restricting the freedom of the consumers and producers of genetic testing devices and services? Can harm be inflicted on individuals by the commercialized tests? Can freedom of choice and autonomy be jeopardized by the absence of restrictions? Can the use of these tests lead to injustice, either locally or globally? Or are there other reasons for thinking that genetic testing, especially in its commercial form, is immoral?
In the presentation, I shall give some answers to these questions by examining cases where there is a definite demand for commercial tests but where ethical objections have been leveled at their marketing and use. I shall examine separately the cases in which concern for one's own health is the decisive motive for the wish to be tested, the cases where purely economic interests provide the motivation, and the cases where parents want to control the kind of children they are going to produce. I shall conclude my presentation by evaluating the strength of the various arguments in the context of legal regulation, and by assessing whether or not the considerations evoked here are specific to the issue of commercialized genetic testing.
Tuija Lehto, University of Helsinki, Finland
Recent developments in biology have made it possible to acquire more and more precise information concerning our genetic make-up. There are a variety of people who are interested in this knowledge. In this paper I propose to set certain limits to their alleged right to know.
There are four groups of people who may claim to have the right to know about our genetic composition. First, we ourselves can have an interest in being aware of our own health status. Second, there are our blood relatives, for whom the knowledge contains information also about themselves. Third, individuals with whom we have contracts and economic arrangements may claim that they have the right to know. Fourth, society as a whole, especially the public health authorities, may claim to have the right to know, as this would provide them with a means to promote general well-being.
As regards the persons themselves and their blood relatives, I shall discuss their alleged right to know in terms of autonomy. Within categories three and four, the right to privacy versus the alleged right of others to know becomes the central issue.
The question "Should access to genetic information be restricted?" can be understood in three different ways. There might be prudential or moral reasons for restrictions. But when it comes to legal regulations, it is held in most liberal societies that grave other-regarding harm should be the primary justification for the use of coercion and constraint.
In the paper, I will discuss in some detail the prudential and moral grounds for restrictions concerning the availability of genetic information. The bulk of my presentation will, however, concentrate with the arguments in favour of legal restrictions.
Fumi Maekawa and Darryl Macer, University of Tsukuba, Japan
The growing understanding of genetics and genetic disease through the near completion of the Human Genome Projects (private and public ones) has been associated with increased general awareness of the roles of genes in disease and their roles in shaping what each of us become. Can we expect people to maintain the same distinctions that they have now between enhancement and medical therapy? Should we expect there to be a distinction? An anlaysis of the collected student homework of 9 years of teaching bioethics at the University of Tsukuba reveals that there continues to be a diversity of thinking among students. Comparisons are made to results of surveys on different groups in Japan over this time, but the focus is on comparison of comments included in student essays, and their interpretation. Still Japanese students have more discretion than students in India or Thailand over the uses of biotechnology in agriculture and medicine.
Paul J Reitemeier, Ferris State University, USA
Deciding whether physicians should be legally enabled to help their patients to directly end their lives is filled with ethical, legal and religious controversy. Several studies purport to show widespread disagreement about the moral permissibility of euthanasia and physician assisted suicide among physicians, nurses, pharmacists, and the general public. The USA bioethics community, stipulatively defined as the members of the Association of American Bioethics (AAB), Society for Bioethics Consultation (SBC), and Society for Health and Human Values (SHHV), includes approximately 1150 unique members. A comprehensive survey of their combined membership was conducted in June, 1997 and a response rate of 640 (55%) was achieved, making it the largest survey of its kind among bioethicists.
Three general categories of data were included: (1) demographic characteristics; (2) religious affiliation as children and as adults; (3) personal and professional attitudes toward legalization of assisted suicide. Categorically related responses are identified and comparisons made with reports from surveys of other professional groups. Preliminary conclusions are offered and suggestions made for future related research.
AbdulFadl Mohsin Ebrahim, University of Durbin-Westville, South Africa
Death is an inevitable phenomenon which strikes at any time during a person's infancy, youth or old age. But one cannot overlook the fact that before the inevitable (i.e. death) does take place, a person may become a victim of a terminal illness, or may lapse into irreversible coma, or a persistent vegetative state (PVS). In various countries, an increasing number of healthy have appended their signatures on what is called the Living Will (or Advanced Medical Directive). This document safeguards their right to die. The paper discusses the Living Will from an Islamic ethico-legal perspective in order to ascertain its validity.
Kamaljit Singh & S.Y. Tan, St. Francis Hospital University of Hawaii, USA
Living Wills or Advance Directives are designed to extend personal autonomy even when the patient has lost decision-making capacity. they are available in most developed English speaking countries including the United States, Great Britain, Canada and Australia. we report on the historic enactment of Asia's first living will and compare it with Hawaii's 1991 Living Will legislation. On 2nd May, 1996 the Parliament of Singapore enacted its Advance Medical Directive (AMD). it allows any Singapore citizen of sound mind above 21 years old to refuse "extraordinary life-sustaining treatment" in the event that he is suffering from a terminal illness and is unconscious or incapable of expressing rational judgment. there are some fundamental differences both in the design as well as the application of the two legislations. The legislation in Hawaii defines "extraordinary life-sustaining treatment" to include the artificial provision of fluids and nourishment. In contrast, the Singapore AMD does not view artificial feeding or provision of fluids as extraordinary treatment. in Hawaii, the legislation applies in the event of a terminal condition or a permanent loss of the ability to communicate concerning medical treatment decisions which includes the patient in a persistent vegetative state, deep coma or severe neurological or brain damage. The Singapore AMD does not encompass these medical scenarios. Both directives are required to be signed in the presence of 2 witnesses but the Singapore AMD requires on of the witnesses to be the attending physician. this may have the advantage of promoting better informed consent. In Singapore all completed AMD's will be held in a central registry which would potentially prevent the loss or tampering of the advance directive. finally, the Singapore AMD does not include a durable power of attorney of health care which can potentially provide for more flexible and comprehensive decision making. the Singapore AMD is in most respects similar to the first living will enacted in Hawaii in 1986. Many of the above shortcomings were quickly recognized and led to the amended 1991 legislation. We predict that Singapore's AMD will undergo a similar maturation as the experience with living wills grow.
Michael D. Fetters, University of Michigan, USA
Medical decision making at the end-of-life is often ethically contentious. This research examined intra and inter-cultural variations in end-of-life medical decision making by physicians in Japan and the United States. Thirty Japanese and 158 US physicians participated in semi-structured interviews about their approaches to end-of-life decision making for terminally ill elderly patients. The interviews were audiotaped and transcribed. Content analysis of the transcribed text involved: 1) multiple readings of the text; 2) coding scheme development; and 3) coding and recording of the interviews. The coding scheme was used to identify a series of decision making paradigms.
The identified paradigms included: a consumer paradigm, an empirical paradigm, a physiological paradigm, a multifactorial paradigm, a good scout paradigm, a humanistic paradigm, and a paternalistic paradigm. While some physicians' accounts corresponded primarily with one paradigm, most physicians demonstrated the use of multiple paradigms. There were two primary differences between the US and Japanese physicians. First, Japanese physicians' reports highlighted their emphasis on the family's input into decision making. Second, Japanese physician's reports most commonly reflected multifactorial decision-making, while most US physician's reports suggested medical decision making hinged primarily upon one or two factors such as patient preferences or treatment effectiveness.
These data illustrate that there are concordant medical decision making paradigms in Japan and the US, but that the most frequently identified paradigms differ between physicians in these two countries. This contrast suggests there may be significantly different cultural perceptions regarding ethical decision making at the end-of-life.
Cong Yali, Beijing Medical University, China
The major features of ethical problems surrounding critical care medicine in China are: the expense of ICU care is higher and Higher compared with personal income, the cost of being dead is much higher than that of being alive, the method of payment is the main factor that affects whether or not patients are admitted who the ICU and the extent of treatment Patients who enjoy free medical service will be easily admitted into ICU and usually treated with all available methods. Informed consent is not complete for patients, but complete for families. Doctors are active in deciding who can be admitted into ICU, but they are passive in deciding the extent of treatment and the time of transfer to general wards. The relationship between doctors and patients is not always harmonious, the allocation of the resources of ICU is unequal among different places. Based on the above features, we analy6se from culture, public policy and ethics. Economic pressure is the main factor for those patients who don't enjoy free medical service to give up treatment in ICU, but there are other factors that lead people to draw contrary decision, e.g. children would not allow their old parents in ICU to give up treatment, otherwise they would not be thought filial. the current health policy is good for those patients who enjoy free medical care, but it is unfair to other people. several conclusions are below: 1) People should pay much attention to bioethics; doctors should learn it deeply and know how to save scare resources, 2) In China, we can form a new model of critical care medicine: the combination of traditional Chinese medicine and Western medicine, 3) Competition mechanisms should be part of hospital management, which can decrease personal expense to some extent, 4) Constituting more laws about critical care medicine will help lighten doctors' restraint.
Sandro Gindro, Psychoanalytic Institute for Social Research, Italy (Cancelled)
We are almost at the end of the "Decade of the Brain". It is thus a time to measure our progress. The enthusiasm connected to new findings in neuroscience perhaps needs to be tempered. Even if the tumultuous growth of knowledge cannot be denied, it is clear that there are more things in heaven and earth than are dreamt in our philosophy. The ancient Socratic motto "I only know that I know nothing" is always valid, in particular in speaking of the human mind. Yet new findings are already sufficient to address a number of new, puzzling, ethical, legal and social problems.
In particular advances in brain research may significantly affect future psychotherapies. From a therapeutic point of view it is now clear that the continued applicability of psychodynamic approaches does not exclude the use of modern pharmacology as well as the new understanding of psychosocial factors. The interest in the psychosocial network is increasing, as shown by the concept of Unconscious Social Drive introduced by Stoller and the description of the Social Unconscious made by Gindro. According to Gindro, the human's unconscious is made up of three fundamental criteria: Instinct, Individual Unconscious, Social Unconscious. What Gindro suggests is that every human being is born into a prefabricated environment endowed with a complex catalogue of messages and stimuli which will condition him. The individual reacts to conditioning, attempting, in turn, to condition the group through continuous interaction. The newborn perceives fantasies of the mother, the words of the father, but also the emotional coloring of the social group. All these elements contribute to the formation of that constellation of values in the midst of which every human being defines himself. The concept of the social unconscious has important consequences for ethics, as Riker has also recently emphasized.
Marian Verkerk, University of Groningen, The Netherlands
In the Netherlands in 1 997 the Council. on Care published a report 'Better without coercion'. In this report the Council of proposed to develop an active policy diminishing coercion of psychiatric patients. In the report it was emphasized that it is better to prevent coercion and instead to develop strategies of pressure on psychiatric patients. The background picture is the acceptance of a law in 1994 (WOPZ) in the Netherlands in which persons can only be coerced to admission to hospital or to other institutionalized forms of care when they are a danger to themselves or to others. Now a few years later it appeared that this law had adverse consequences for many of psychiatric patients, who are homeless and without any help. (Particularly those persons, who have a psychiatric problem as we]1 as an addiction) The law WOPZ has particularly put emphasis on the right of self-determination as an expression of the value of autonomy. The above mentioned report of the Council on Care is one of the answers to this problem. It proposes a policy, that can he seen as a middle way. It is a mean between the one extreme of neglecting self-determination and the other extreme of neglecting patients in their needs. By developing strategies of pressure it might seem to be possible to help patients without overriding their right to autonomy. Still, it remains unclear what the salient ethical notions in such a relationship of care are. Trust, attention and commitment seem to part of it, as well as autonomy. But also, one can ask what the meaning of autonomy is here. ' I would like to propose that a relational concept of autonomy is needed. In my paper I want to develop such a relational concept of autonomy and moral agency, which can be of use in thinking about the above mentioned problem. I will make use of insights which have been developed in the so-called ethics of care. Although care ethics have been criticized for lacking an account of autonomy, I think, that an ethics of care can provide a basis for a relational concept of autonomy. In the second part of my paper I will discuss an account of the care-relationship as a process, which I think wit] be of use for thinking about strategies of pressure concerning psychiatric patients. In thinking about care as a process (see e.g. Joan Tronto in Moral Boundaries, (1993) it becomes possible to show how different parties are involved (the care-giver, the care-receiver, society, family members, those responsible for care in society etc.) and how each of these parties have their own normative views . The goal of care as a process is to develop an integrated form of care.
Alastair V. Campbell, Centre for Ethics in Medicine, University of Bristol, UK
Too much of the literature of bioethics has focused on the dilemmas of acute medicine, giving the false impression that most of health care proceeds through dramatic decision making in life or death situations. In fact, for the vast majority of patients, the issues are ongoing ones with no obvious resolution through a single decision. So we need a re-orientation that deals first and foremost with chronic illness and its challenges to the endurance and creativity of those who suffer it. The questions raised by chronic illness raise questions about the adequacy of the dominant theories of contemporary bioethics and provide a natural entree for the theories of virtue ethics.
In this paper I shall describe the theoretical background to a project under the European Commission BIOMED programme, of which I am the coordinator, which is entitled "Virtues and Chronic Illness". This project is designed to offer fresh insights into how an alternative approach to medical ethics can give a better understanding of the problems faced by the chronically ill. We have selected four conditions in which the main issue is not simply a treatment one, but a question of the patient's capacity to cope. In such situations, the doctor may well play a subsidiary role to that of the patient, for, the main question to be resolved is that of the patient's ability to find a sense of value in an ongoing battle with pain and disability. We are, therefore, not interested in virtuous doctors, but in virtuous patients! Researchers in the Centre for Ethics in Medicine, Bristol, UK, will work with two groups of patients: women with endometriosis (which causes chronic pelvic pain and creates major problems with fertility) and men and women with osteoarthritis (a degenerative process affecting the joints, which is the commonest cause of pain and disability in older people). In the Department of Ethics, Philosophy and History of Medicine, Nijmegen, Netherlands, patients undergoing hemodialysis for end stage renal disease will be studied. Hemodialysis is an effective lifesaving treatment, but it has major physical and psychological disadvantages which lead to a discontinuation rate in nine percent of patients. In the Psychoanalytic Institute for Social Research, Rome, Italy the ongoing problems faced by patients with Affective (Mood) Disorders will be the focus of research. Disorders of this kind are among the most common of all chronic illnesses, with depression alone affecting some 12 percent of women and 8 percent of men. To assist in the theoretical analysis and practical implementation of the empirical work the researchers will be advised by patient representatives and consumer groups, and will also use the expertise of two other Centres, the Department of Medical Philosophy and Clinical Theory at the University of Copenhagen, Denmark and the Centre for Applied Ethics, University of Wales, Cardiff, UK.
Since the research project is currently at the start-up phase, I will not discuss the detail of any of the nominated chronic conditions. This would be premature, when no empirical research involving the patients themselves has been carried out. Instead I shall concentrate on explaining the conceptual relationship between virtue and responsibility for health as this affects the actions of both patients and health professionals involved with chronic illness.
Jan L. Bernheim, Vrije Universiteit Brussel, Belgium and M. Rose, Charite Humboldt-University Berlin, Germany
Medical, scientific and societal progress have been such that, in a universalist humanist perspective such as the WHO's, it has become an ethical imperative for the primary endpoints in evidence based health care research to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health-related functions and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in reflectionmetrics is the measurement of the equality term in QALYs. That the mental, physical and social domains, each containing many dimensions and items, all contribute to QOL is un-controversial. In human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably also in chaotic ways. In the latter conditions, the weights of isolated items in individuals would for all practical purposes become meaningless. Therefore, the frequently used multi-item questionnaires describe aspects of QOL, but do not evaluate it, neither in individuals, nor in populations.
For example, allergic patients treated with cetirizine scored better than placebo on all dimensions of the SF-36 (BOUSQUET ea., J. Allergy Clin. Immunol., 1996 ; 98(2) : 309-16). Here there is no doubt that the treatment improved QOL, because it is highly unlikely that any important dimension on which the patient groups would have scored otherwise is missing in the SF-36. However, whether piracetam treatment of acute stroke, which improved the surrogate endpoints neurological and functional scores (DE DEYN ea., Stroke, 1997 ; 28 :2347-52), also improved QOL is plausible, but will be proven only when comprehensive QOL measurement will have been done. And suppose in a randomized population of metastatic solid cancer patients, we would compare palliative treatment and chemotherapy with only palliative care, and would, as can be expected, find no significant differences in survival, and chemotherapy superior for the mental domain, but inferior for the physical comfort domain : we would not know which treatment, on aggregate, would be the better.
The problem is that QOL is an individual and emergent construct. Overall QOL can therefore best be captured as the gestalt of a global self-assessment. Just as people in everyday life, while acting under uncertainty, make global assessments all the time, so they can seriously answer the serious question : how have you been ?î. A solemn, practical, non peer-relativistic, non-cultural, empirical, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACSA) (Berheim et al., J. Psychosoc. Oncol. 1 : 25-38, 1984), in which the subjects' memories of the best and the worst times in their life experience define their individual scale of QOL. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic. Using both a multi-item questionnaire and a global assessment allows by regression analysis to estimate the weights of the dimensions and items in populations, and thus identify those whose improvement would most contribute to the QOL of the greatest number (Rose et al. below). A combined approach to measuring of QOL is necessary to maximize the utility of QOL interventions.
Rose M1, Scholler G1, Klapp BF1, Bernheim JL2; 1. Charite Humboldt-University Berlin Germany; 2. Vrije Universiteit Brussel, Belgium
Medical, scientific and societal progress have been such that, in a humanist perspective, and according to the WHO definition of health, it has become an ethical imperative for the primary endpoints in evidence based health care to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health-related functions or even overall function, and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in "felicitometrics" is the measurement of the "quality" term in QALYs. Unquestionably, the physical, psychological, and social dimensions contribute in a variety of ways to the overall quality of life (QOL) of an individual. Current health research usually attempts to measure QOL through the assessment of its different dimensions. However, these probably contribute to the intuitively experienced QOL to individually varying extents, depending upon the subject and the situation, and these dimensions are interactive. Therefore, QOL is an individual, emergent construct, even the most sophisticated multi-dimensional approaches remain reductionistic, and overall QOL must be measured globally. Yet, to practically better "engineer" health care, it is useful to know to what extent the different dimensions contribute to the global experience of the QOL. Consequently, it is important to study the relationships between separate contributive dimensions (which may be amenable to interventions), and global QOL (which is not).
To calculate the weights of different dimensions in patients' global biographical-empirical assessment of QOL by Anamnestic Comparative Self-Assessment (ACSA) (Bernheim & Buyse, 1984), the data from six established questionnaires (200 items) dealing with the various aspects of QOL in 870 psychosomatic patients, 65 patients with chronic hepatitis C, 119 patients with chronic inflammatory bowel disease (IBD), and 116 patients with diabetes mellitus were studied by linear regression analysis against ACSA scores.
Results: The evidence is that very different factors are dominant in global QOL, depending on the nature of the illness. For example, in the psychosomatic patients, the failure in structuring their daily lives (Fragebogen Alltag, Bullinger et al. 1993) was most strongly associated with reduced QOL standard, e.g. present depressive mood or personality traits were ranked less important (standard =17-11) and, remarkably, serious body complaints played only a minimal role, whereas the latter were a dominant dimension for the QOL of patients with IBD.
The very variable weights of different dimensions in the global QOL, as observed in these different populations, make generic multidimensional instrument profiles uninformative for overall QOL. Considering individual aspects and global aspects of QOL jointly, however, results in more pertinent information on the situationally-specific influences on subjective well-being and offers an evidence based rationale for potential remediating interventions.
Svend Andersen, Denmark
The most comprehensive Danish research project in Bioethics is carried out 1993-1995. The project pressupposes a definition of bioethics which covers biomedical ethics as well as animal ethics and environmental ethics, the decisive point being that bioethics is related to biological research and application of biotechnology. It consists of two parts: (1) Foundations of Bioethics; (2) Problems of Applied Ethics. As to (1) we have tried to find a common ground for the most influential ethical theories in a Danish context: utilitarianism, "autonomism" and protestant ethics. As to (2) interdisciplinary research has been done in the fields of empirical ethics, genetics (human and animal), animal ethics and regulation of biotechnology.
Anne J. Davis and Takako Mitoh, Nagano College of Nursing, Nagano ,Japan
This paper describes in-progress research focused on selected ethical problems confronted by Japanese and Western nurses in providing car for terminally ill patients. These nurses can and do confront different ethical dilemmas in their work but many of these problems in both groups stem from the issue of disclosure or non-disclosure to the patient of his or her diagnosis and prognosis. Patients confide in nurses and, in some cases, ask them specific questions about their situation. Such patient behavior as this questioning can create ethical problems for the nurse but in different ways depending on the culture.
Emiko Kohnishi, Nagano College of Nursing, Japan - International and Japanese Nurses Attitudes About Information Disclosure
Marie Vassallo, Australia (IAB Nursing Net)
This paper will look at an Ethic of Care as defined by Noddings, and its relevance to the nursing profession. I will briefly compare Care with traditional ethical theories to highlight the areas that care is deficient. In my opinion, an Ethic of Care as it currently stands, is insufficient as a guiding moral entity for the nursing profession, which has grasped the theory of care in an attempt to further expand on nursing's separate identity from medicine. I will expand further on this issue, highlighting the linguistic gray area that care falls within.
Ivan Segota, University of Rijeka, Croatia
After having established their autonomous professional HUMS (CNA) in 1992, nurses in Croatia - which is one of newly formed and independent states from former Yugoslavia -adopted their first code of ethics in 1995. Considering its basic features, it is a modern ethic document which tries to connect professional ethics of Croatian nurses with bioethics (informed consent), while simultaneously, by not mentioning problems in some issues (abortion and euthanasia), it seeks to keep balance with traditional Hippocratic medical ethics and deontological theories of Catholic setting.
Ayako Soyano, Nagano College of Nursing, Japan
This international comparative study examines the perceptions and experiences of international and Japanese nurses regarding the ethical issues in the care of the dying patient. These two samples returned the questionnaires: 1) 99 International nurse attendees at the ethical sessions of a 1997 International Nursing Congress and 2) 147 Japanese nurse attendees at a nursing ethics seminar in Japan. Striking diffierences between the international and Japanese nurses on issues including information disclosure and definition of death reflected cultural and social factors.
Emiko Konishi, Anne J. Davis, Ayako Soyano, Marika Suzuki and Katsumasa Ota, Nagano College of Nursing, Japan
This study, part of a larger international comparative research project, examines international and Japanese nurses' perceptions and attitudes about disclosure of serious diagnosis/prognosis information to terminally ill patient. Responding to a questionnaire survey with forced-choice and open-ended questions. 99 international and 147 Japanese nurses participated in the study. The lack of agreement between the international and Japanese nurses on this issue reflected differences in ethical reasoning, patient's rights, health care decision making, the relationship among patient/ family/health professional, and the meaning of the good death.
George P. Smith, Catholic University Law School, USA
Within the not too distant scientific future, a human will be cloned and the first person undergoing cryonics or deep-freeze suspension, in other words a "cryon," will be resuscitated. When perfected, these biotechnological achievements may guarantee the immortality sought by man for so long . A plethora of problems--medical, legal, social, economic, philosophical, and religious--mark the pathway for (development and utilization of these scientific inventions. Indeed, these developments may well release what Professor Gustav Nossal observed In the 1971 Brisbane meeting of the Australian and New Zealand Association for the Advancement Science as 'monsters" of 'molecular biology." The direction of this paper is to explore the extent to which law should develop its, basic postulates and the basic justifications from science, or whether it should be .responsive in a non-anticipatory manner to challenges of the New Biology and the Brave New World . The central question which is posited from present experimental work In, for example, cloning and cryonics , is whether genetic engineering of this nature should be promoted and encouraged as a basic recognition of the freedom of scientific inquiry and right to privacy, or whether the common good recognizes such scientific pursuits as a hindrance to the future development of mankind and, as such, dictates a posture of cautious containment and review.
What is called for in the final analysis is a new human rights debate among all participants sipping the directions of the New Biology--lawyers , scientists , technologists , ethicists--that will reconsider and reshape, as is necessary, the extent to which both the traditional and redefined rights of humanity are challenged or complimented by the plethora of medical, legal, scientific, and technological considerations of today's Brave New World, indeed, as Justice Michael Kirby of the High Court of Australia has observed, "if lawyers are to continue to play a relevant part, in the human rights debate of the future , they must become more awareof the scientific and technological advances . Otherwise , they will increasingly lack understanding et the questions to be asked, let alone the answers to be given." This paper will also probe theological underpinnings inherent in any analysis of law, science and medicine debate.
Demetrio Neri, University of Messina, Italy
The paper deals with one of the main issues linked to the foreseeable increasing ability of genetic engineering to modify the genetic composition of human species through direct interventions on the genome of human beings for medical and non-medical purposes: the "risk " of a resurgence of eugenics. In the current discussions - but also in national and international official documents: e.g., the Italian law on assisted procreation or the Opinion of the GAEIB to the European Commission - the ghost of eugenics is very often raised, but there is a great deal of confusion on what counts as eugenics, partly because of a wide conceptual disagreement on the notion itself. According to some scholars, furthermore, there is no hope of overcome this unsatisfying conceptual uncertainty. Partly challenging this opinion, the paper tries to identify some basic features which could be thought of as being intrinsically linked to any notion of eugenics, with the aim at reducing the range of conceptual disagreement, as a preliminary step in bringing into focus what exactly is wrong with doing eugenics. In the final section the paper deals with the substantive issue whether or not to do eugenics from the point of view of the interest of future generations in the genetic composition of human species.
Ainsley Newson, Murdoch Institute Royal Children's Hospital, Australia
The existence of genes pertaining to human intelligence may soon be indisputable. Although the definition of "Intelligence" is contentious, it (as with other behavioural traits), has shown a high degree of heritability, commonly measured as IQ Specific genes have been identified which lead to low intelligence (or mental retardation) when mutated, but no genes have yet been identified which contribute to the "normal" variation in intelligence. However, it is likely that advances in the Human Genome Project will lead to the identification of such genes in the near future, as well as illuminating the way in which they interact with environmental variables. This research is likely to continue to determine the molecular basis of intelligence, in an effort to understand mental handicap and learning disorders, and to develop new treatment strategies.
This paper will review the current research into the genetic basis of intelligence, and discuss the ethical concerns raised with respect to this research. It will examine the techniques used to date, and study the proposed models for the heritability of intelligence. The paper will address the question - "Should this research be undertaken?" It will examine the role of intelligence in society, and how this research will affect both prejudice in society and individuals' perceptions of self. It will examine some of the other issues raised by genome research into the molecular genetics of intelligence, such as whether clinical testing should be developed, the limits of genetic enhancement (and the just distribution of such technology), and information mismanagement. It will be argued that this research is important, at least in so far as it will contribute to our understanding of learning disorders and mental disabilities.
Yanguang Wang, Chinese Academy of Social Sciences, China
This presentation consists of four parts. In the first part a review on the varieties of eugenics in the world. In the second part and overview on Chinese "eugenics" and its ethical problems. In the third part to value the Chinese "eugenics" against the background of Chinese economics and culture. In the fourth part to find the ways about how to solve the ethical problems of Chinese "eugenics".
Richard Weisburd, University of Tsukuba, Japan
The word development means to fulfil a particular end or need, but what end or need? The problems facing society today suggest that a reassessment of this question is warranted. Here, I analyze some fundamental aspects of our physical world, human nature and capitalism, as well as the ways these interact. The Earth is essentially materially closed and the stable climate and composition upon which we depend is maintained by complex interactions between physical and biotic forces. Humans are hard-wired by evolution to reproduce and consume as much as possible, as well as to compete and be compassionate. Capitalism's most important goal is to maximize the generation of wealth. Humans in our capitalist world increase in numbers and affluence as much as possible until growth in numbers or affluence is curtailed by approaching or exceeding the carrying capacity of some essential system. In the process, ecosystems that provide essential services are damaged or destroyed. Such destruction is unethical. Further, capitalist systems are not particularly equitable for people today, and even less equitable between generations. The goals of development must be reassessed in light of our finite world, fundamental aspects of human nature and capitalism, and the ways that these interact.
Jan Bernheim, Ruut Veenhoven and Francis Heylighen, Free University of Brussels, Belgium
This paper argues that both the relativist and the pessimist critiques of the idea of human progress are unfounded, while agreeing that the 18th century concept needs to be updated by a more evolutionary and holistic approach. Progress is defined as worldwide increase in global quality of life (QOL) per person and QOL as the aggregated perceived and expressed Gestalts of emergent constructs about happiness by individuals. Such QOL is intrinsically subjective, but not relative. It is constrained and to be censored only by universal ethical imperatives. It can be reliably estimated through "overall life satisfaction" questions and better still through Anamnestic Comparative Self-Assessment (ACSA), a uniscale of QOL using the personal life experience as an internal standard (see Rose ea. and Bernheim and Rose, this conference). Thus the subjective can be objectivated and quality can be quantified. The Rotterdam "World Database of Happiness" contains the normalized results of surveys asking the one question on overall, global, life satisfaction in random samples of the populations of 53 countries. The Northern European and Anglo-Saxon countries report the greatest happiness, and Third World and Eastern European countries the lowest. Also extensive objective data on social, economic and psychological factors that correlate with QOL are available. They include health, wealth, security, knowledge, freedom, public honesty, and equality. It is revealing to note that most of these objective factors are closely related to universal ethical values. Various statistical data suggest that, worldwide, all these QOL indicators have undergone significant improvements during the last half century. As a corollary, suffering can conversely be measured, and can be shown to globally be decreasing.
Taken together, these data give a strong support to the thesis that progress objectively occurs and that progress also encompasses the bioethical state of the world. Some downsides of contemporary evolution, such as pollution and the increased pace of life are discussed, but it is concluded that they can be tackled without really endangering global progress. The anxiety that they engender is unfortunately amplified by a "bad news" bias in the media, which on the other hand also reflects humanity's novel intolerance for suffering. It is finally argued that progress is a necessary component of evolution, which is fueled by the mechanisms of natural selection, knowledge growth and virtuous cycles.
K.K. Dua, Dayalbagh Educational Institute, India
Science and technology have played an important role in improving the quality of mankind. However, they have also contributed to the deterioration of the social and natural environment due to irrational utilization of the natural resources. Thus man must fully recognize the urgency of maintaining the stability and quality of environment and conserving the natural resources. The environmental education has to play an important role. The basis of education should have (4C' s) curiosity, creativity, competence and compassion. There can be no science without curiosity, no technology without creativity and no production without competence. Compassion is the key for environmental conservation. All species have an inherent right to exist. It has to be borne in mind that every form of life is unique warranting respect, regardless of its worth to man and this should be guided by a moral code of action. The respect for all living beings is possible by environmental ethics. No peace and stability on earth is possible until and unless man mentally develops an attitude for the welfare of all living beings. "Respect for rights of others is the basis for peace." This is only possible when science and technology are applied with ethical frame of mind. This can be achieved by attaining "Knowledge of the Self" exhorts Bhagavad Gita.
Aruna Sivakami, University of Madras, India
Ground water has always played a major role in the life of people of India as surface water, for Industrial, Agricultural and Municipal use, but not as a major source of Drinking Water. This has led to indiscriminate digging of borewells coupled with power pumps and merciless and excessive extraction and use of ground water without commensurate recharge as well as leaching of pollutants to the aquifers that has led to depletion and lowering of water tables. The Central Pollution Control Board conducts periodical surveys of the most contaminated areas and initiates projects for monitoring the quality of ground water at selected sites in different parts of the Country. Manali in Ponneri Taluk of Chengelpet District is one such and North Arcot District being other. Manali has been taken as a case study of serious ground water pollution by industries mostly treated partially that are dumped into sewers or storm water drains to get stagnated or get into Buckingham Canal and find the way to the sea during heavy rains. The analysis of groundwater samples indicates high TDS ranging between 1116-8224 mg/1 at all locations with corresponding high values of sodium Calcium, Chloride, Sulphate and total hardness. Besides the high salinity, viral and bacteriological contamination was also observed at all locations. Salt water intrusion is also a major problem of this area.
North Arcot is another area of Soil & Water pollution that has been seriously affected by tanneries. The non perennial river Palar along with its tubutaries Goddar, Malattar, Poni drain this district. The river basin is mainly agrarian. The Urban Centers play host to tanneries, dyeing and match making units. They draw the underground water of these rivers.
Ground water analysis shows high salinity and high concentration of the ionic species like Sodium, Chloride, Sulphate, Calcium and Magnesium corresponding to total dissolved solids ranging between 2529 to 10,674 mg/1. Again chromium used in leather tanning and solid waste disposal are hazards to soil and water. Nitrates and bacteriological contamination is also discovered.
Policy and Management perspectives dictated that industries should be directed to efficiently operate and maintain ETP's and CETP's so that they do not dump untreated waste water outside their premises. What has been done to sensitize the issue among public and politicians? What solutions given by the engineers and technologists have been adopted? What are the strategies adopted by the ground water wing for ground water protection strategies management and aquifers. These should be examined in detail to get a clear picture. How the slums of Manali and Buckingham Canal and North Arcot tanneries contribute to the health hazards would also be focused.
Ole Doering, Institute of Asian Affairs, Germany
Bioethics does only make sense as a global approach. It comprises personal, international and intercultural aspects, each of which brings about its own cluster of ethical problems. In order to deal with these problems in a civilized manner, we need to make up the conceptual basis of understanding, and work out an integrative theory of bioethics.
A conceptual language is not a universal lingua franca, but a normative code which defines the basic ethical concepts, terms and procedures underlying the bioethics venture. Thus it outlines the very conditions and constraints of a global bioethics. A conceptual language of bioethics ought to be flexible enough to integrate conflicting or antagonistic views. The first question is: how do we systemize the debate and make a global bioethical community possible?
This paper suggests that the ethical is 'to will and act only as it is morally right', and that the condition of bioethics is that 'ethics is possible and reasonable'. It does not to explore the conceptual content of a bioethical language, but focusses on an even prior issue. A perplexing problem for global ethics is, how to integrate unethical and destructive interests into its theory, or, 'how to argue with people who deny morality?'.
One of the most challenging attempts to provide a framework for bioethics has been submitted by Tristram Engelhardt in his Foundations of Bioethics. Because of its communitarian and secular design this work appears to be attractive for many scholars in Eastasia. Engelhardt's arguments are build largely on the notion of 'moral strangers'. The suitability of this notion for solving the fundamental bioethical puzzle will be discussed. It will be argued that the very term of 'moral strangers' can serve as a concept of understanding people who deny morality, but that Engelhardt's own framework does not provide sufficient conceptual depth to support such an interpretation. Finally, some patterns from Confucian ethics will be outlined, which promise to be more substantial for approaching a conceptual language in bioethics.
Michael Tai, Chungshan Medical & Dental College, Taiwan
Can we speak of a biomedical ethics with Asian spirituality ? Or should we adopt its general principles as stressed by most bioethicists in the west ? Since there are cultural differences between east and west, an outright adaptation of western ideas will undoubtedly experience maladjustment, if not rejection in a new environment. Transferring an idea from one place to another is just like transplanting an organ from a donor to a recipient. Rejection is anticipated unless powerful anti-resistant measures are taken to insure the success of transplantation. Our body will reject whatever is foreign. Will not our cultures respond to the incoming new idea from different value systems with resistance or even rejection ?
Biomedical ethics has received much attention lately . Its importance will only increase with the advancement of medical technology and more medical breakthroughs. That increasing conferences focusing on bioethical issues have been convened in Asia indicates the new awareness of medical professionals and academics in Asia. The fundamental change of medicine from the role of care to cure(1) has motivated medical scientists to reconsider the humanness of medicine (2). But will the principles upheld by bioethicists take root in Asian soil or should they be re-interpreted, even modified so that bioethics can become Asian, with Asian spirituality ?
Leonardo D. de Castro, University of the Philippines, the Philippines
The idea of an Asian (or a European or an American) bioethics calls into focus characteristics that are peculiar to a particular culture or nationality. Clarification of these characteristics calls for a comparison with other cultural or national bioethics in order to highlight differences. The differences are important because they determine identity and set Asian bioethics apart from, e.g., European or American bioethics.
Some writers have sought to justify ethical positions that come into conflict with what are apparently widely-held human rights standards by appealing to unique Asian values. A number of practices justified in terms of unique Asian values have thus tended to elicit controversy. By international human rights standards, these may be exploitative of women, of children, or of some other vulnerable sectors of society. But they have been supported by an appeal to tradition and to the sanctity of indigenous values.
This kind of approach is premised on the assumption that differences are the most crucial to identity. These must be preserved if identity is to be preserved. However, similarities are no less important than differences. What is important about (essential to?) being Asian is not necessarily peculiar to Asians. Commitment to bioethics is commitment to humanity. Asian bioethics can only be as concerned about the preservation of its peculiarly Asian identity as it is about the integrity of its essentially human heritage. This concern for humanity must be manifested in a commitment to what is essentially human about women, children, and other vulnerable sectors of society.
Jing-Bao Nie, University of Texas Galveston, USA
Through discussing some theoretical and "methodological" issues involved in a larger research project on abortion in China, this paper attempts to spell out some primary elements of an interpretative cross-cultural bioethics. This intellectual exploration draws inspiration from the thoughts of contemporary philosophical hermeneutics developed by Gadamer and Ricoeur and the insights of interpretative bioethics articulated by the American medical humanist Ronald Carson and others. The empirical materials to build and support arguments come from the field findings on Chinese moral beliefs and experiences of abortion--various voices behind the silence.
A fundamental dimension of contemporary bioethics lies in its cross-cultural characteristic. So far there exist two models in cross-cultural medical ethics: 1) a principle oriented model which applies the standard principles formulated in the West, especially the United States, to international circumstances, and 2) transcultural model which aims to find and establish a set of metacultural moral values. This paper attempts to develop a third model, an interpretative approach, which emphasizes understanding, meaning, practice, plurality, commonplace experience, context, local worlds, narrative, thick description, and constant conversation.
For most Chinese people, abortion appears not to be an ethical problem at all-i.e., taking the life of a fetus needs no moral justification. Yet, there are many moral conflicts, moral dilemmas and moral assumptions involved in women's experience of abortion and doctors' performing abortion. The interpretative approach requires attention to moral practice, life stories and individual experiences to arrive at thick descriptions and critical understandings of ordinary Chinese people's morality concerning abortion. In doing so, this approach will help us to appreciate the moral complexity of abortion in China currently shrouded in social silence, to understand the striking differences between Chinese abortion morality and perspectives in the United States, as well as in Japan, and to promote a deeper and richer dialogue between different medical moral traditions on abortion.
Peggy Battin, University of Utah, USA
Conflict between concern over global population growth (still rising precipitously, even though growth rates have slowed) and concern for reproductive rights is intense. Neo-Malthusians, on the one hand, point to the dire consequences of overpopulation; feminist defenders of reproductive rights and religious opponents of population control, on the other, point to abuses population programs have involved. It may seem impossible to address both sorts of concern at once, so much at odds the solutions to them may seem: both limiting childbearing and permitting people to have the children that, for personal or religious reasons, they may want.
In this paper I argue that thanks to what may seem to be a tiny, incremental development in reproductive technology, there can be a solution to this conflict--one which promises both a significant drop in population growth and the fullest protection of reproductive rights and preferences. Drawing on the distinction between two principal types of contraception, short-acting or "time-of-need" technologies and long-term or "automatic" contraception, it poses a thought-experiment: What if everybody--all fertile females, and when the technology becomes available, all fertile males--were to use "automatic," reversible contraception? The effect of this circumstance would be to reverse the default mode, so to speak, in human reproduction, so that having a child would require a deliberate choice, followed by the action of removing or neutralizing one's form of contraception. Under the assumption that people would choose to have fewer children than they would accept having when unplanned conception occurs, we can predict a dramatic decrease in population growth--indeed, the greatest possible decrease consistent with the full protection of reproductive rights for both females and males. Such a prospect would be morally acceptable only under three conditions, 1) safety, guaranteeing that any devices used pose no physical risks and cause no substantial side effects; 2) universality, to avoid the targeting of groups perceived as at higher risk, and 3) guaranteed reversibility, so that people can always attempt to have the children they want. If these conditions are met, it is possible to resolve much of the conflict between Neo-Malthusian concerns over population growth, on the one hand, and feminist and at least some religious concerns about reproductive rights and population control on the other.
Maurizio Mori, University of Pisa, Italy
I want to argue that the issue of the embryo is quite secondary and marginal in the whole controversy over artificial reproduction and control of population. In fact the real issue is about whether or not persons have the right to artificial control of reproduction. Once admitted this point, most of the issues are solved and most moral issues are easily solved, even if psychological problems remain.
Alex Capron, University of Southern California, USA
Nearly 20 years after the U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research released its first report, "Defining Death," and brought forward the Uniform Determination of Death Act as a statement of the modern consensus view on how to "define death," suggestions continue to be raised about adopting alternative views: either limiting determinations to the traditional means of measuring circulatory/respiratory cessation or expanding the category of death by including patients who have permanently lost higher brain functions only. The author presents practical as well as principled reasons for believing the middle course steered by the President's Commission remains the correct one.
Peter Singer, Monash University, Australia
Brain death is commonly thought of as a scientific, rather than an ethical, criterion for determining that someone is dead. I shall argue that this view is mistaken. The switch from the traditional conception of death to brain death was made because of the clear ethical benefits of being able to disconnect patients whose brains had irreversibly ceased to function, and of being able to make use of their organs. By being presented as a shift in a scientific criterion of death, however, it was possible for it to be accepted without controversy. For various reasons, the concept of brain death is now under pressure both from those who would wish to move to a "higher brain" conception of death, and from those who previously accepted the brain death criterion, but have been led to reconsider it. I shall examine both these positions before making my own recommendations.
William Ruddick, New York University, USA
By solely biomedical criteria, brain-dead patients are "near-dead." Whether they are so near-dead as to count as dead depends on non-medical, "social" factors (familial, societal, metaphysical concerns). Physicians have reason to ignore or deny those extra-biomedical factors for they qualify or undercut physicians' authority in clinical decisions. So too, philosophical materialists committed to reducing concepts to scientific terms have reason to deny that social factors play any part in the question, Is brain-death death?
But any adequate account of brain-death and human death, generally, must recognize such factors. Human death, so "socialized", is not, however, the same as the "death of the person" that advocates of higher-brain criteria for brain death and death invoke. Unlike such "personal death" defined by contrast with "death of the body", human (or "biographical") death supplements the notion of animal death, and thus maintains the continuity of humans and animals required by evolutionary theory.
In short, like the question, Are viruses alive?, the question, Are brain- dead patients still alive? is indeterminate. But in both cases, context and circumstances defined in part by human interests, can yield a determinate answer that in no sense is either arbitrary or conventional.
Guy Widdershoven, University of Maastrict, Netherlands
There were only two things to choose between on that Wednesday - operating or euthanasia'. This quote is from the book A very easy death, written by Simone de Beauvoir in 1964 (De Beauvoir, 1966, p. 50). In the book, she describes the last weeks of her mother's life. Her mother is taken to the hospital after she has fallen down the stairs. In the hospital, the doctors diagnose a malignant tumour. This fact is - after some time - revealed to the family but it remains a secret for the mother. She is told that she is suffering from peritonitis. She is operated - without prior notice -, and although she lives some weeks longer because of the operation, her condition is very bad. She is constantly overcome by feelings of sickness and torment. She is part of a race between pain and death, a race of which De Beauvoir says that she and her sister `most earnestly hoped that death would come first.' (p. 66).
For many years, this autobiographic book has been regarded as a plea for euthanasia. The title seems to hint at this, and the word is mentioned in the book, as can be seen from the quotation above. Many readers were touched by the painful suffering of the mother and scandalised by the unjust treatment she received from the doctors, namely prolonging the life of a dying person with unnecessary technical means. The book has also been regarded as a plea for patient' autonomy. It neatly fitted in with the rise of bioethics. The notion of informed consent has become a central issue in health care ever since the book came out.
However, we want to contend that the book is much more than a plea for euthanasia and patient' autonomy. It is not a theoretical exposition but a description of the experiences De Beauvoir is going through when she is confronted with the death of her mother. These experiences are richer than the explanations that have been given of the book over the past years. The concepts of euthanasia and autonomy are treated in the book, but they figure within a personal account which contains lingering doubts and ambivalent feelings. Besides autonomy, the story is also about interpersonal relations, in particular the relationship between De Beauvoir and her mother. The concept of euthanasia (`good' or `easy' death) is broadened: from a self-chosen death it is transformed into dying as a shared process in which more people are involved. The book is not only about autonomy but also about care.
Michael Parker, Imperial College London, UK
Communitarians such as Daniel Callahan and Hilda and James Lindeman-Nelson argue that there is a conflict in health care between the individualistic values of modern patient-centred medicine and those values which sustain families and communities. They suggest that the current emphasis on individuals and their rights is to the detriment both of health care and of society more widely and they advocate a concerted reaffirmation of communal values. For, only this, they suggest, can generate a context in which both the values of individuals and communities such as families can be sustained.
Critics of communitarianism however, particularly feminists, argue that whilst recognizing the damage that can result from the breakdown of families and of communities, Communitarians fail to adequately recognize the damage that can be done to individuals by communities themselves. Communitarians, their critics suggest, are not capable of recognizing the moral status of the individual and are as a result unable to explain why it is that we feel it right at least sometimes to uphold the rights of individuals over the communities of which they are members. That is, Communitarians are in danger of losing sight of just what is valuable about patient-centred medicine.
In this presentation I will draw upon both my own philosophical work and my experience as the coordinator (with Donna Dickenson) of a large European Commission research project on medical ethics involving twelve conferences on core ethical themes in health care with practitioners from every European Union country. By means of discussion of a real case from this project I will argue for a 'conversational' approach to medical ethics which is capable of capturing the insights of both the individualist advocates of patient-centred medicine and of their communitarian opponents whilst avoiding many of the most damaging weakness of each. The approach I shall advocate is particularly interesting because it draws upon both the Anglo-American analytic and the continental European hermeneutic traditions and is therefore very pertinent to the theme of the conference. I shall argue for a discursive approach to ethical questions in medical ethics, based upon a set of conversational principles.
George Agich, Cleveland Clinic Foundation, USA
Autonomy is a pivotal concept in contemporary bioethics, so much so that its dominance has allowed this concept to function in a rather unruly fashion. Underlying the concept of autonomy is a largely political/legal understanding that finds the clearest expression of autonomy in the concept of legal rights. In this paper, I argue that the dominance of autonomy not only effaces other principles, such as beneficence or justice, but that it abstracts from the complex actual features of autonomous action, choice, and thought. If autonomy is to have a mature role in bioethics, it needs to be developed beyond its present adolescent unruliness.
I argue that autonomy can be rehabilitated as a concept in ways that stress the contextual and situated nature of autonomy; such an account stresses the necessity of dependence for autonomy, as well as the developmental, institutional, and social context needed to sustain concrete expressions of autonomy. So regarded, autonomy is a far more fragile feature of human existence that is especially important in medicine, because illness, sickness, and disease always reveals the vulnerability of human existence. I will argue that a phenomenological-oriented view of autonomy can soften the hard edge that the political/legal model gives to autonomy. The resources for this rehabilitation are to be found not in a rationally or theoretically driven analysis of the concept, but in a phenomenological understanding of the situated nature of autonomy as it is expressed in the shared world of social existence.
Donna L. Dickenson, Imperial College London, UK
My contribution to the above workshop would be a report on the findings of the project which I am directing under a European Commission grant. 'European Biomedical Ethics Practitioner Education.' A series of twelve workshops throughout Europe have revealed three principal approaches to ethics in Europe: a Scandinavian administrative, conflict-resolution model; an Anglo-Dutch emphasis on rights; and a southern European deontological approach also consistent with care ethics. I would outline these distinct approaches and how they differ from principlism in its classical formulation.
One of the workshops was titled 'Autonomy, feminism and vulnerable persons', and I would also consider the findings of this seminar concerning feminist critiques of autonomy and restructuring of the concept, This would involve some consideration of other feminist authors who have recently begun to reconstruct 'malestream' concepts in ethics and political theory, such as participation, authority and property.
Robert Baker, Union College, USA
From its birth, bioethics focused on the crises of the present and the challenges of the future, dismissing the past as an irrelevant subject of only antiquarian interest. Yet the medical ethical norms accepted within any given culture represent efforts at resolving conflicts of interests within medicine, and between medical institutions and the cultures within which they function. So analyzed, the history of medical ethics provides us with the best evidence available of the likely success of current proposals to resolve bioethical conflict. To analyze the crises of the moment one thus needs to reexamine the crises of the past and the mechanisms through which they were, or were not, successfully resolved. The current furor over cloning humans, for example, is best understood in terms of analogous earlier conflicts: the conflict between observational medicine and cultural conventions of modesty; the conflict between the medicine of clinical-pathological correlations (established through autopsy) and cultural prohibitions against desecrating the human body; the conflict between assisted reproductive technologies and cultural conceptions of sexual intercourse. By focusing myopically on the controversies of the moment, and by defining issues in terms of ahistoric principles, contemporary bioethics tends to obscure broader cultural forces - even as these forces structure contemporary bioethical debates, behind the backs of bioethicists, so to speak. In this workshop we consider the ways in which an historically-informed bioethics can look to the past to shape the solutions most likely to resolve contemporary bioethical conflicts successfully.
Albert R. Jonsen, University of Washington School of Medicine, USA
Bioethics, the surge of interest in the ethical issues of the new biology and medicine, first appeared in the United States in the late 1960s. This interest took the form of public discourse, policy formulation and academic discipline. These forms were shaped by three peculiar features of the American ethos: moralism, meliorism and individualism. Moralism extends moral judgment to every aspect of personal and social life; meliorism views personal and social progress as the norm for moral goodness; individualism centers value in individual choice rather than communal cohesion. In the late 1960s, these three characteristics of the American ethos met highly charged moral circumstances, namely, the debates over the war in Southeast Asia and over civil rights. American bioethics evolved as it did within this context. It is of interest to compare this evolution with that in other cultures and nations.
Zhang Daqing, Center for History of Medicine, Beijing Medical University
This paper reviews the international codes and declarations of bioethics and examines their effect, application and facing problems. The universal principles of bioethics have been considered as the theoretical basis of the international codes and declarations, although their application and validity are continually being challenged.
At first, the background of the international codes and declarations is explained and their effects on medical science and technology and health care policy are discussed. The international codes and declarations are classed into three categories: concerning the basic rights of human beings, the codes for all physicians, and the declarations on the ethical dilemma of medical technology.
Secondly, the author thinks that there is a common moral base for the universal principles in bioethics, because it concerns the common problems of human beings: respect for life and relief of suffering. In this part, the common moral base for the universal principles is discussed in three fields: biological heritage, social and cultural heritage and effects of science and technology. The universal principles of bioethics are justifiable, although there are cultural and social-economic differences among the countries. We could not reject a cross-cultural critique because of the differences. Different moral communities could agree on some universal principles of bioethics, but they can still explain the principles according to their own cultural traditions and religious beliefs. This is a paradox of the universal principles of bioethics.
Finally, the author discusses the relationship between the universal principles of bioethics and Chinese traditional medical ethics, as well as the application of the universal principles of bioethics in China and its problems.
Pinit Ratanakul, Mahidol University, Thailand
Thai society, eager to bring the benefits of modern medicine to its people, has adopted modern health care models and the new medical technologies from the West, without regard to social/economic and cultural differences. As a result, this society has been confronting the same ethical questions that have been raised in the West such as in the areas of human experimentation, organ transplantation, genetic intervention, reproductive technologies, and death and dying. Apart from these problems there is the pressing issue concerning the threat to Thai traditional medicine from Western biomedical paradigms which have been adopted uncritically. Equally urgent is the macroallocation of limited health care resources, grave inadequacies and inequalities in their distribution. This involves the lack of adequate budget allocation for health care in rural areas, the shortage of hospitals/health clinics and health care personnel in these segments where poor people are unjustifiably neglected and not receiving their due as moral equals,
These issues need to be dealt with satisfactorily to ensure morally adequate and humane health care services for Thai people. Therefore there was the need for Thai academics and medical professionals to engage themselves in bioethical analysis of these issues by plumbing the resources of their own moral and religious traditions in such analysis and in the formulation of ethical guidelines that reflect also Thai cultural values. Out of this concern arose the discipline of Bioethics in Thai society.
"Bioethics" has been the preferred term over "medical ethics" because while the term "medical ethics", as it has been used in Thai society, refers more to professional etiquette "bioethics" is concerned with the practices and discoveries within all the life-sciences which have far-reaching implication for the self, society and even the human revolutionary future. Apart from teaching the present bioethical activities in Thailand include the efforts to bring the awareness of bioethical issues such the abuse of poor patients and the violation of their human rights at hospitals, for example, through drug testing and test of new contraceptives to the public and concerned authorities through the mass media.
Maurizio Mori, University of Pisa, Italy
I hold that in looking at the history of bioethics, we have to distinguish two levels of the debate. On the one hand we have bioethics as a cultural movement, and on the other one as an institutional setting. I argue that as a cultural movement the origins of bioethics are to be found in the English speaking world in the late Sixties and early Seventies, mainly as a result of controversies over abortion and death issues (as in the Karen Quinlan case). From the U.S., U.K. and Australia, the cultural movement spread over the world in different ways and adapted in various ways to different social realities. This cultural movement may have been favoured by some preliminary attention devoted to other issues concerning, for instance, human experimentation, etc., and by the following institution of Committee, but this institutional aspect is secondary to the history of the cultural level. In other countries the process was reversed in the sense that the cultural movement came before and stimulated various institutional settings.
Andre Chuffart, Swiss Re Zurich
Progress made in predicting illness will alter information on the risk of illness. Whereas formerly we all shared the same uncertainty insofar as our health was concerned and believed ourselves to be equal in the face of illness, we now know that we do not all have the same chances. The genetic revolution at the root of this upheaval will, of course, have important consequences for private insurance, and in particular at the level of the insurer/policyholder relationship. This revolution is thus no longer just scientific, but equally ethical and social.
Like all new knowledge, genetics arouses fear, primarily because of the abuse it could lead to, but also because of ignorance and the erroneous opinions and unfavourable prejudices that surround it. It is therefore not surprising that some people are desperate to limit certain of its applications. Such a reaction is understandable as emerging technologies quite often generate fear: for example, in the UK, at the beginning of the automobile era, an Act for further regulating the Use of Locomotives on Turnpike and other Roads for agricultural and other Purposes, which took effect on 5 July 1865, stipulated that: Firstly, at least three Persons shall be employed to drive or conduct such Locomotive ... Secondly, one of such Persons, while any Locomotive is in Motion, shall precede such Locomotive on Foot by not less than Sixty Yards, and shall carry a Red Flag constantly displayed, and shall warn the Riders and Drivers of Horses of the Approach of such Locomotive and shall signal the Driver thereof when it will be necessary to stop, and shall assist Horses, and Carriages drawn by Horses, passing the same; ... Finally, it is worth stressing that the topic of genetic testing and insurance is not new: more than 60 years ago, Professor Ronald A. Fisher made a presentation at the 1935 International Congress on Life Assurance Medicine in London, entitled Linkage studies and the prognosis of hereditary ailments.
The arguments against genetic testing that are most frequently cited in public debate are as follows: Genetic testing entails an invasion of privacy, to the extent that insurers may be seeking access to confidential information that applicants themselves do not want to know and that may affect multiple family members. Genetic testing could cause insurance applicants to be rated up or denied insurance, even for risk factors beyond their control. Genetic testing might entail classifying people at birth or even before, and possibly lead to entire families being disqualified for insurance. As people do not believe that insurers are using personal information for insurance purposes only, they fear that genetic testing could lead to job discrimination, stigmatization and social exclusion. People could be forced to undergo genetic tests against their will in order to obtain insurance.
Most insurers are aware of the problems that arise because of developments in genetics and of the fears that this science inspires in the public at large. Their main concern is that if they are prohibited from having access to pertinent information at the time of underwriting or when the policy is renewed, the consumers will use genetic information to abuse the insurance system, taking advantage of private knowledge of the risks they are submitting for coverage. Insurers have good reasons to be concerned: in many countries, legislation is in force or pending, aimed at prohibiting them from asking applicants to undergo genetic tests and from having access to existing genetic information.
Michael A. Morris, Geneva University Hospital, Switzerland
The current debates concerning the potential applications of genetic testing and the desirable controls of the use of the resulting genetic information have been triggered principally by the extraordinary pace of recent advances in our knowledge of mammalian genetics and the perception of a near future in which the predictive power of genetics will be applicable to decision-making in domains as diverse as health care, employment and insurance. These debates are correctly taking place at all levels of society, and vary considerably in their sophistication and their practical aims, but have one feature in common: an assumption of homogeneity.
But are we sure of the subject of debate? What is a "genetic test", when is information "genetic"? The common perception equates these with "DNA testing" and its results, but the diversity of techniques employed in genetic investigation makes any definition based on this unworkable. Some definitions include gene products such as RNA and proteins, or even "certain metabolites"; others argue that skin colour, body weight, height, blood pressure or intelligence represent genetic information. It is difficult, if not impossible, to formulate a complete and precise definition which could be employed for the formulation of meaningful and applicable guidelines, codes of practice and legislation. It may prove necessary to reposition the debates, in particular those concerned with practical and long-lasting applications such as legislation, to more general but more applicable concepts such as privacy and data utilisation.
Alexandre Mauron, University of Geneva, Switzerland
The development of predictive genetic testing has important and highly complex implications for insurance and also for any societal distributive mechanism using actuarial logic. The ethical and legal debate on these issues has two distinct sources. On the one hand, the professional ethos of clinical geneticists has emphasized autonomy-based values and practices such as non-directive counseling and the "right not to know". On the other hand, legal instruments tend to focus on genetic discrimination and its avoidance. But genetic discrimination is itself a highly complex notion, that needs further specification in order to function as a valid normative criterion. Depending on how it is defined, it turns out that not all differential treatment of persons according to genetic constitution is inherently "discriminatory", or alternatively, that some "discriminations" are legitimate.
Further reflection suggests that many ethical dilemmas relating to the use of genetic predictive data in insurance can be understood in terms of an inherent tension between the requirements of actuarial fairness and the demands of social justice. Whenever insurance is basically a tool to allocate primary goods ("merit goods"), such as health-coverage, actuarial fairness must yield to social justice, and genetic underwriting is to be rejected. This is not the case for other kinds of insurance to which there is no social entitlement, such as many life-insurance contracts. But even for some of these insurance products, there is a social interest in limiting genetic discrimination by differential underwriting, if the wide accessibility of such coverage carries positive externalities ("social goods"). Furthermore, there are ways in which more mutualistic - i.e. less discriminatory - underwriting practices can be actuarially sound and economically viable. In addition, as private insurers are increasingly called upon to perform social functions previously assigned to the Welfare State, they ought to adjust to the ethical concerns and principles that are appropriate in the field of social welfare. In the end, these are not merely economic choices but political ones, that express our collective concern with mitigating the consequences of the genetic lottery.
Developments in genetic screening and testing, in particular the interest of the pharmaceutical industry in producing genetically targeted products, have led to suggestions that population screening programmes will classify the population according to risk. One response is to propose virtual CD-ROM genetic counseling to deal with the resource problems of providing counseling. This study will include ethical analysis of the issues for public policy regarding service provision and undertake empirical research concerning attitudes to virtual genetic counseling.
Ruth Chadwick, University of Central Lancashire, UK
Ethical criteria for the introduction of population genetic screening programmes have included considerations about the nature and seriousness of the condition in question, the possible harms and potential for benefit, the reliability of the screening test and wider social implications. It has been suggested, however, that research on genetic susceptibility not only to particular conditions but also to the side effects of pharmaceutical products will be a major driving force towards the introduction of population screening. This paper explores the possible impact of this trend for the criteria thus far proposed for population screening and the implications for health service provision and public policy.
Urban Wiesing, Eberhard-Karls University Tubingen, Germany
The public debate about genetics in Germany is heavily influenced by German history, in particular by the atrocities of the Nazi era. The paper seeks to demonstrate the consequences of German attitudes to their history. Whether justifiable or not, the consequences are relevant for the possibility of global bioethics. The case of genetics in Germany will be used as an example in discussing the possibility, the limits and the problems of a global bioethics in the light of unique histories and different traditions.
Jorgen Husted, Aarhus University, Denmark
In various national legislative initiatives as well as international ones, e.g. The Council of Europe's Bioethics Convention, special attention is being paid to genetic information. The assumption seems to be that genetic information is in principle different from other kinds of medical information thus calling for special consideration, principles and safeguards. However, it is quite easy to argue that there is nothing special about genetic information. Whatever can be said about genetic information, e.g. its predictiveness, also applies to other kinds of medical data. Thus, it appears rather difficult to gather the rationale for developing new and special principles for this kind of information - about which there is nothing special. The conclusion - so the reaction goes - should be that genetic information, and applied human genetics generally, are to be dealt with within the ordinary framework of biomedical ethics and legislation.
This conclusion, it will be argues, is too hasty. To understand the special attention being given to genetic information on has to appreciate what makes genetic information special. Considered from one point of view, as it were objectively or disengaged from certain human concerns, there is nothing special about genetic information. Considered from another point of view the very same thing - genetic information - is made into something special requiring special attention and special legal and ethical initiatives. This latter perspective is the European Christian-humanistic tradition with its fundamental values - its 'ethos'. It will be argued that this point of view is not just one optional perspective among others. In its part of the world it forms the very core of persons' conception of themselves as human beings in the human world and of human and civilized relations among human beings. The new wave of applied human genetics, and the various uses of genetic information, pose a potentially very serious challenge to this 'ethos'. In arguing for its contention the paper will draw on the Danish philosopher S¯ren Kierkegaard.
Tony McGleenan, Queen's University of Belfast, Northern Ireland
The use of genetic screening and testing techniques in the areas of life and health insurance pose serious challenges to the way in which we organize our public and private lives. Pressure is mounting in numerous jurisdictions for legislative responses to the perceived threat of genetics. In the United Kingdom the government has established the Human Genetics Advisory Commission and has specifically requested this body to examine and report on the issue of genetics and life insurance. Elsewhere in Europe national government have begun to consider legislative possibilities. In Belgium the Law of Insurance contracts of 1992 prohibits the use of genetic information in the formulation of insurance contracts. Similar laws have been passed in Austria and Norway in 1994. The insurance industry in a number of European countries have agreed to introduce voluntary moratoria on the use of genetic technology. These moratoria will expire before the end of the century. At that time the number and effectiveness of genetic tests are likely to have increased to the point where there will be a strong economic incentive for insurance companies to use them. This paper examines and critiques the various policy options for the use of insurance in genetics.
Darren Shickle, University of Sheffield, UK
In February 1997, worldwide media was dominated with stories about Dolly the Sheep. Journalists, politicians and general public seemed astonished and horrified. Further stories about cloning have appeared sporadically since then, together with a building momentum for stories of how genetics represents the Holy Grail to cure humankind of disease or enhance our quality of life.
Ethical and safety concerns about genetic research are reported, but coverage tends to be limited and inconspicuous. More importantly ethical arguments have had little impact on the direction of research or the scientist carrying it out. Media headlines are a much more important influence on researchers who require publicity of success to build their professional reputations and to generate further funding.
However, Dolly the Sheep was not the first time cloning hit the headlines. Cloning of amphibians in the 1960s, David Rorvik's book "In His Image: The Cloning of a Man" published in 1978 and the cloning humans by embryo splitting at George Washington University in 1993, all generated extensive debate within the media. The ethical arguments that appeared decades previously, were reproduced during the Dolly debate, sometimes with quotations from the same people. The stakes involved with the genetics gamble are high, and ethics needs to be at the forefront of the debate. However, such arguments do not seem to be at the fore of the minds of scientists, journalists and policy makers. Ethics needs to rise to this challenge.
Daniel Wikler, University of Wisconsin, USA
As I and others have pointed out in many publications over the past two decades, the concept of brain death (i.e., permanent cessation of all brain function) is an implausible definition of death. Nevertheless, the adoption of brain death in statues defining death has saved lives and will continue to do so. This is reason enough to enact and support these statutes. Eventually, the brain death definition of death may be viewed as a temporary expedient, one which strained common sense but which served a noble purpose.
Melissa Hersh, Medical College of Wisconsin, USA
The cognitive dissonance created by imminent or actual brain death, has demonstrated the ambiguity in reconciling legal criteria with medical tests and religious and philosophical definitions of death. It is our belief that preconceived beliefs about bodily integrity, prior experience with illness, trust in the medical establishment, privacy, educational methods/materials, and religion and spirituality will significantly effect the level of comfort and understanding families experience when reflecting on the perceived quality of care given to both their loved one and themselves.
Although this project will aim at separating out the experience of death from that of the option for organ donation, questions will be asked about death related-phenomena and bodily integrity (autopsy, post-mortem research, and organ donation). The primary objective of this project is to identify the needs of families experiencing the loss of a loved one to brain death. It is our assumption that perceived satisfaction with care directly correlates to the meaning of death, more specifically brain death, holds within a family's hierarchy of values. A "good death" is a category, the meaning of which is imputed by individual families, and is often not easily assessed by health care professionals. Conceptual beliefs are distinct from medical and legal beliefs, thus creating conflict in a very technical setting.
A multivariant analysis of data extrapolated from focus groups will be used to modify surveys that will be used for personal interviews as well as develop educational materials (visual aids). Phase II of the project involves surveying HCP's about their understanding of brain death criteria, definitions, and tests used. We believe that personal beliefs about brain death effect HCP's degree of comfort and consistency when explaining brain death. Combined data from the focus groups and family and staff surveys will be used to develop a multidisciplinary task force to create a Brain Death Communication Pathway.
We anticipate that data received from this project will help dispel HCP assumptions about what families need when experiencing the loss of a loved one to brain death. We also anticipate that the (BDCP) will facilitate consistent explanations of brain death as well as allowing staff to assess a "good death" experience for families. We believe that a secondary outcome of this project will be an increase in the comfort of organ donation as well as an increase in donation consent rates.
Carl B. Becker, Kyoto University, Japan
China and Japan have been slow to adopt the brain death criteria long used by America and Europe. China and Japan share a cultural and ethical heritage which discourages organ transplantation, and their medical establishments share structural barriers which obfuscate protection of patients' rights. Recently, both China and Japan have adopted brain death criteria but it appears that economics is the driving force in each of their ethically dubious positions. In China, doctors assist in prisoners' executions, often scheduled for the convenience of wealthy foreign transplant recipients, and China's demand for foreign currency has led to a boom in executions recently. In Japan, a curious law defines brain death based on the presence of a donor card and absence of objection to transplantation. Two people in identically brain-dead physical states are pronounced living or dead depending on their cards and relatives' wishes. This allows hospitals to maximize their incomes, for brain-dead patients cannot be removed from expensive life-support systems unless they and their relatives agree to transplant procedures which will net the hospital even more revenue. This presentation contrasts the traditional ethical stances of these Buddhist-Confucian cultures with their present worrisome procedures.
Paul J Reitemeier, Ferris State University, USA
Patients with isolated traumatic or metabolic injury to the neocortex of the brain resulting in a persistent vegetative state (PVS) are unique individuals from a medical point of view. The ethical question facing caregivers is how to understand their professional obligations to provide medical supports and care in the face of overwhelming evidence of permanent and comprehensive unconsciousness in an otherwise functioning body. In this paper I pose and offer answers to the following 3 questions: 1) Are these individuals alive human beings, or do they meet the definition of dead human beings? 2) If they are alive, can reasonable claims be made on their behalf for public resources to maintain their physiologic functioning? 3) If reasonable claims can be made, are there justifiable limits to providing those medical resources even when the resources are not otherwise being utilized?
Michael D. Fetters, University of Michigan, USA
This paper examines the use of cardiopulmonary resuscitation (CPR) and other end-of-life practices in Japanese and US hospitals. I examine the implications of different practices for Japanese and North American conceptions about death with dignity.
When there are unexpected deaths of hospitalized patients in Japan and the US, CPR is routinely attempted to save the patient's life. In the US, the endpoint for CPR is assessment by the code team leader that continuation will not result in the patient's survival. In Japan, however, doctors commonly continue CPR for several hours even if there is no expectation of survival. Rather, CPR is continued to provide the family time to come to the hospital, to observe cessation of CPR, and to be at the patient's bedside at the time death is pronounced, a practice known as shini me ni au. Post-mortem rituals in Japan include cleansing of the body, application of make-up to the corpse, and dressing the patient in a special clothes. Physicians and nurses often demonstrate their respect for the patient and family by lighting incense in the family's presence in a holding chamber, the reianshitsu. After CPR in the US, families are given time to grieve with the deceased, though thereafter the corpse is expeditiously transported to the morgue for refrigeration.
This research illustrates that notions about a death with dignity vary dramatically in Japan and the United States. Assertions about the ethical aspects of medical care at the end-of-life must account for cultural notions of a good death.
John P. Lizza, Kutztown University, USA
This paper discusses how alternative concepts of personhood affect the definition of death. I show how parties in the debate over the definition of death have employed different concepts of personhood, and thus have been talking past each other by proposing definitions of death for different kinds of things. I conclude by suggesting that the discussion of death needs to focus on which approach to personhood makes the most sense metaphysically and morally.
Dawn Doutrich, Linfield-Good Samaritan School of Nursing, USA
Essentially all nursing educational experiences and written educational material from the USA are filled with Western dominant values. Japanese nursing educators have noted that some imported nursing educational and health care notions may be conflicted with traditional Japanese values. Based upon Heideggerian phenomenology, the purpose of this study was to describe Japanese practices and background meanings related to nurses' concerns, specifically with imported concepts; Japanese caring practices; and specific issues around the care of AIDS patients/universal precautions. The researcher was hosted in Japan by Nagano College of Nursing's, President Mitoh, Professor Ikeda, and Dr. Anne Davis.
Participants, Data Collection, and Analysis Data for the study consists of narrative text from twenty interviews. Participants were comprised of Japanese nurses who had received masters or doctoral degrees from schools of higher education in the USA, nurses who had spent time in the USA on scholarly exchange (both groups classed as international scholars), or nurses who were particularly knowledgeable about specific practice areas where imported health care ideas are common (e.g. AIDS care, end of life decision-making, and clinical instruction). The process of data collection and initial analysis took place simultaneously over three months. Ten of the twenty interviews were transcribed prior to leaving Japan and three group analysis sessions took place there with Japanese and US nurse scholars participating. Data were transcribed and managed using "The Ethnograph 4.0" software package (Seidel), a software package designed to assist with analysis of narrative text. Narratives were analyzed for common themes, exemplars, and paradigm cases which best illustrated the nurses' perspectives.
Analysis has continued in the US. Although no longer in daily contact with Dr. Anne Davis, e-mail communication has continued. Analysis sessions with US nurse scholars have proven fruitful in identifying comparisons between values and ethical concerns of nurses in the USA and Japan. The Japanese nurses identified several areas of professional and personal value discrepancy with imported ideas. For example, nurses described their sense of dissonance with informed consent--how informed consent is interpreted in the US contrasted with how informed consent is seen in their practices in the Japanese context. Additional findings involve the meaning of wearing hand protection (usually latex gloves) for nurses in Japan, and the high value placed upon anticipatory care in Japan.
Young Rhan Um, Dept. of Nursing, SoonChunHyang University, Korea
The purpose of the study was to introduce an integrated approach of New Casuistry and Specified Principlism in resolving ethical problems and studying nursing ethics. In studying clinical ethics and nursing ethics, there is no systematic research method. While nurses often experience ethical dilemmas in practice, much of previous research on nursing ethics has focused merely on describing the existing problems. In addition, ethicists presented theoretical analysis and criticism rather than providing the specific problem solving strategies. There is a need in clinical situations for an integrated method which can provide the objective description for existing problem situations as well as specific problem solving methods.
There are two distinct ways of discussing ethical issues. One of these, which can be called "the top down" approach, focuses on the application of principles and rules. The other focuses on the specific features of particular kinds of moral cases.
The Integrated Method is a combination of New Casuistry and Specified Principlism. In this Integrated Method, the conclusion draws on the specification of principles within the present case by integration between the ethical values, rules, principles within a case and 4 principles of biomedical ethics. Specification is also influenced by the facts in a case. This argument depends on the specification of the principles. The conclusion is provisional, but specification can end in a case if there are no more rebuttals.
I used this integrated method in my studies and lectures. First, this method could be used to construct and interpret cases related to research topics when I tried to identify characteristics of the ethical issues or search for resolutions. And I could suggest an answer to resolve the ethical problems by specifying principles. Second, the
Integrated Method provided students the opportunity to differentiate between moral and non-moral problems, and collect relevant facts for judgment by structuring cases in clinical fields independently. the students can understand the relationship between a case and principles and feel that they are real agents in moral life through specifying
In conclusion, the Integrated Method is useful for nurses or doctors to resolve real moral problems in clinical fields. And students can identify ethical issues, and learn how to use the moral reasoning process.
Ahn Sung-Hee and Sung-Suk Han, Catholic University Nursing College, Korea
This study investigated the kinds and frequency of ethical dilemmas, and analyzed and evaluated the rationale of ethical decision making in student nurses. The design employed both quantitative and qualitative methods. The study involved 100 student nurses who were educated for 26 study hours as follows ; bioethics, professional guidelines in nursing practice, theory and principle of ethics, euthanasia, transplantation, do not resuscitate orders, informed consent, artificial abortion, human experimental research and ethical decision making. Data were obtained using an open-ended two part survey.
Further research is needed to develop a hypothetical case which contained ethical dilemmas for education and then to evaluate educational effect of ethical decision making using the case among student nurses and clinical nurses.
Bela Blasszauer, Medical University of Pecs, Hungary
One of the most serious problems with the developing democracy in Hungary is that those institutions and mechanisms are missing that could very much improve democracy on the daily basis. For example, a complaining procedure in a hospitals, clinics or social homes is quite inadequate - to say the least. Those who feel they have been wronged, begin their long and endless journey in the world of futile complaints. Most of them, sooner or later, have to give up ever receiving any compensation, apology or even any moral Ñreimbursement". Sometimes the complaints are handled with arrogance and striking impoliteness. Thus when all the 'official' possibilities are exhausted, patients turn to the media or to some bioethicists who are known to be 'outspoken'. In this last case, a number of questions comes up as how a bioethicist can do any good for the complainer and what he or she should actually do. There is, however, a hopeful sign for the future, namely a health care ombudsman institution is planned to be created in Hungary. This might solve, or at least ease that serious problem, which poison the lives of some people.
Torbjorn Tannsjo, Gothenburg University, Sweden
I have argued elsewhere (Cf my Coercive Care) that it is wrong coercively to treat people who are capable of reaching an autonomous decision about their need for treatment. They should not be treated in their own best interest, nor should they be treated in the best interest of others. But this does not answer the question how we should treat people with senile dementia or mental retardation who have a reduced capacity. Three possibilities seem to exist here.
1. We make an exception from the rule and treat people in these categories whenever treatment is needed (and endorsed by their family or next of kin), irrespective of their own will. This seems to be a standard Eastern model, and it used to be also a standard Western model, not long ago.
2. We try to single out, in an act of law, the cases where treatment is needed and where coercion is warranted (what I will call "modest" coercion), from the cases where coercion should not be used (we prohibit what I will call "meddlesome" coercion). This means that we allow coercion to take place in cases where treatment is needed and where it is rejected by the patient only because he or she does not understand why the treatment is needed, but forbid coercion in all other cases.
3. We forbid all kinds of coercion against these categories but practice a system of double standards where, as a matter of fact, some (modest) coercion is encouraged to take place and other kinds of coercion (meddlesome coercion) is discouraged.
On the models 2 and 3, the family or next of kin do not take part in the decision to treat a patient coercively, it should be noted. In my paper I defend the third model.
James Dwyer, New York University, USA
In this paper I reflect on my experience of trying to challenge an unethical practice. To begin, I describe one of the unethical practices that came to my attention. I learned, in the course of my work with medical students, that some residents in obstetrics sometimes perform forceps deliveries when there are no medical indications. They do so because they want to gain the experience and improve their skill. When I learned about this practice, I discussed the matter with my students, and I thought about what I should do. Here I take up four points.
First, I compare this practice to other practices and cases in order to articulate what makes this practice unethical. I emphasize the conception of a good physician, the role of medical indications, and the purpose of consent. Second, I discuss the social arrangements, individual habits, and rationalizations that allow this practice to go on. Here I emphasize the role of a two-class system of health care and the seductive force of a narrow view of justice. Third, I consider the kinds of education, institutional arrangements, and feelings of responsibility that help students to challenge this unethical practice. I report on some of the actions that students have taken. Finally, I reflect on my own responsibility. I discuss what hindered me from challenging this unethical practice, what action I took, and whether I did enough.
T. Manopriva & D.S. Sheriff, VMKV Medical College Salem, India
The phenomenon of cheating is not new although the evidence suggests that the incidence may be increasing. In ancient times the Chinese locked their rising scholars and civil service examines in individual cells to prevent copying, and the death penalty was in effect for examiners as well as examinees if an individual was found guilty of cheating. Despite these precautions cheating does take place. This is one of the unethical behaviours that seems to be on the rise in many of the institutions. There is growing awareness and concern regarding the unethical behaviours on the part of elected and appointed officials of State and National Government, businessmen, professionals. Physicians are not immune to these concerns that have been implicated in a broad spectrum of dishonest activities ranging from fabrication of research data to double billing of Medicare patients. In academia, cheating is the major common form of dishonesty, although cheating has been studied in virtually every academic venue, much of the literature involves college students.
Studies over the last few decades indicate that a shocking proportion of students cheat, with estimates ranging from a low of 15%-20%TO OVER 90%. One would hope that the incidence of cheating among medical students would be significantly lower that among undergraduates. A profession historically viewed as ethical would be expected to attract students with strong codes of personal ethics. Such does not appear to be the case. Instead studies showed that among 27% mad %*% of medical students have admitted cheating to at least once during the medical school. The survey conducted showed that the dominant factor was the peer approval or disapproval that determines the frequency and intensity of cheating. Others have also implicated the dominant influence of social mile, and moral climate on students behaviours including cheating. Recent attention has focused on faculty members attitudes and responsibilities and the importance of an unambiguous institutional policy. The personal characteristics of the cheaters in comparison with non-cheating peer, tend to score lower on IQ tests, low percentage of marks in the qualifying examinations, less self- sufficient, more neurotic, more extroverted and over ambitious.
Eric Feldman, New York University, USA
This paper will discuss the link between medical ethics in Japan and what has come to be known as Yakugai AIDS, or HIV infection caused by contaminated blood. Some scholars have claimed that beyond the allegations of inappropriate economic incentives, political corruption, and industrial policy, the root cause of the distribution of HIV-tainted blood in Japan was a lack of medical ethics. Had only physicians informed patients of the risk of HIV, it is said, many infections and much angst could have been prevented. The norms of Japanese medicine are thus seen as the underlying cause of a human tragedy. While there is some truth to such an account, it ultimately fails to identify any aspect of Japanese medical ethics that, if changed, could have prevented the distribution of HIV-contaminated blood. The causes of the tragedy in Japan are more complex; a change in medical ethics is not the solution.
R.R. Kishore, Ministry of Health and Welfare, India
Despite several rounds of deliberations there has not been unanimity on certain important issues relating to HIV vaccine trials on human subjects. The International Ethical Guidelines for Biomedical Research Involving Human Subjects issued by the Council for International Organization of Medical Sciences (CIOMS) in 1993 were amended by the World Medical Association Declaration of Helsinki in 1996 which were also subjected to revision by the AMA. Even they are not acceptable and are going to be further revised. This is partly because the subject is in an active stage of development and the conceptual crystallizations are overtaken by the emerging knowledge leading to fresh controversy, before they are implemented. Conceptual ambiguities are one of the reasons for nonconcretisation of phase III trials of HIV vaccines in any part of the world -- not even in the developed countries where phase I and II trials have already been completed. But despite heterogeneous perceptions and approaches the essential concerns relating to HIV vaccine trials on human subjects are founded on certain common perspectives namely, urgency of liberating the society from HIV/AIDS pandemic, non-deniability of community obligation by the individual, inevitability of ignoring the promises of advancing biotechnology, achievement of scientific perfection and accuracy in the development of HIV vaccine, obtaining informed and free consent of the subject before initiating the trial, commitment to observe maximum care and precaution for the safety of volunteers during the trial, and consistency with the host country's socio-economic, cultural, religious and demographic milieu. The policies and programmes concerning HIV vaccine trials should be consistent with these major perspectives in order to attain social credibility, conceptual stability, and human appeal..
The global scenario is undoubtedly diverse. On one hand are the responses like Marcia Angell's which declare the trials to be unethical on the grounds of discrimination and subordination of human subjects to the goals of research (1) while on the other are the people like Gordon Nary who question. "HOW many more deaths ale going to move us to humanize science" and feels that what id needed is, "science in the service of humanity, as opposed to science in service of science" (2)
The Indian panorama presents a blend of variable trends and expectations. The country's large population of nearly 970 million lives under diverse religious, cultural, geographical and economic conditions, with grossly different perspectives and priorities. Owing to illiteracy, poverty and overpopulation health education and counseling is a formidable task. Rank poverty in certain areas have compelled the people to sell their body parts. This calls for great degree of integration of variable perspectives and concerns throwing additional challenge to the health strategists.
In this paper after having analyzed the prevailing milieu I argue that conceptual evolution is a continuing process which should accompany, not overtake, the functionality which is equally important and I conclude that scientific progress is a collective pursuit in which every individual is committed to participate unless he undertakes not to derive any advantage out of the emerging discoveries and inventions, and as such, the human trials HIV vaccines do not constitute any ethical miscarriage per se and there is an urgent need for universalization of ethical concepts and harmonization of policies between the developed and developing countries which can only be achieved by laying emphasis on core considerations.
References. 1. Marcia Angell. The Ethics of Clinical Research in the Third World. New England Journal of Medicine (1997) 337, 847-49; 2. Meredith Wadman. US dispute over live AIDS vaccine trials. Nature 1997 Oct. 2; 389 (6650):426
Yanguang Wang, Institute of Philosophy, Chinese Academy of Social Sciences, China
AIDS---a special and new disease--- creates many issues for bioethicists and policy makers. Many dilemmas in Chinese AIDS/HIV prevention policy need to be solved. A strategic tolerance is designed to address these dilemmas. Strategic tolerance defines a professional role morality. The immediate purpose of strategic tolerance is to win the cooperation of members of stigmatized groups at high risk for contracting AIDS. The selling point for this strategy is, as I have mentioned, the practical need to win the cooperation of these individuals in checking transmission of HIV, which occurs as a result of acts done in private and thus beyond the reach of regulation. Strategic tolerance differs from tolerance as a moral ideal in that it does not ask of any individual that he or she change their disapproval of the stigmatized behavior. Instead, my principle asks that we weigh what we may regard as the wrong involved in prostitution, homosexuality, and drug use against the greater evil of an AIDS epidemic. A "strategic" principle of tolerance, as opposed to a moral ideal of tolerance, offers the most effective and practical way to confront the risk of a terrible epidemic in China. The approach based on moral principles and ideals that many Chinese experts have proposed for the prevention of AIDS/HIV will be realized only over the long term.
Salud B. Zaldivar, Research Institute for Tropical Medicine, the Philippines
What are we to do if we are confronted with over a handful of antiretroviral (ARV) takers who are devastated to have been 'mis-informed' that their supply of drugs will soon be discontinued? The counselor invited 7 out of 10 ARV enrollees who were then present to talk about their problem in a Focus Group Discussion by re-creating the TITANIC scenario that placed all passengers in eminent danger of drowning. Participants had the option to choose the role they were most comfortable with, or modify according to their wish, etc. An animated discussion developed where important ethical and societal issues relating to safety, security, and survival were deliberated and analyzed. The facilitator summarized the policy implications to the problem on hand. The participants pushed for the proceedings to be submitted to the institutions concerned.
Having gone through the TITANIC 'exercise' readily facilitated the benefits of peer reflection and support. All participants claimed its cathartic effect as further evidenced by the glow in their face and change in attitude in subsequent visits. It also brought home the message that the issues may have empirical answers, but in reality it could be anyone's guess.
Robert Veatch, Director, Kennedy Institute of Ethics, USA
Advance Directives (ADs) provide a mechanism for expressing one's choices about medical care delivered at some future point when one is unable to express contemporaneous desires. ADs may either be substantive or proxy directives, either specifying substantive desires or naming a proxy decision-maker. They have been used primarily for terminal care decisions, but, in principle, could be used for any treatments for persons who are no longer able to make contemporaneous decisions.
ADs are an outgrowth of the bioethical revolution that has challenged Hippocratic paternalism, replacing it with an ethic that includes respect for the patient's autonomous choices. Hence, they are most congenial to cultures that emphasize the ethical principle of autonomy rather than more traditional physician-dominated decision-making.
Hans-Martin Sass, Rihito Kimura, and I have recently completed
a transcultural study of advance directives funded
by the Volkswagen Foundation, comparing their relevance in Germany,
Japan, and the United States with attention to their use in Latin
America as well. This presentation summarizes the findings of
that research. It examines the link between the use of ADs in
medical decision-making and the broader cultural characteristics.
The United States, with it strong commitment to self-determination
and individualism is most conducive to ADs. Japan is moving from
physician-dominated decision-making and priority on the family
as prior to the individual, but retains many cultural values that
resist ADs. Germany is a complex intermediate case. For a fuller
account of this research see Advance Directives and Surrogate
Decision Making in Transcultural Perspective Edited by Hans-Martin
Sass, Robert M. Veatch, Rihito Kimura. Baltimore, MD: Johns Hopkins
University Press, 1998.
73A2. Framing the physician assisted suicide debate
Tom Buller, University of Alaska, USA
The debate over the moral and legal permissibility of physician assisted suicide (PAS) has been frequently framed as moral symmetry argument: = PAS is permissible if it can be shown to be morally equivalent to the refusal of life-sustaining treatment. To this end, considerable time and energy has been spent on the concepts of causation, intention attempt to prove or refute the purported equivalence of these two types of actions. However, I think that this way of framing the assisted suicide debate is unhelpful for the following reasons: (I) It is unlikely that analysis of causation, intention (etc.) will yield the appropriate clarifications. As discussion of euthanasia and PAS over the last fifteen years has shown, the above concepts are insufficiently defined to yield agreement as to the "real" cause of the patient's death, or the physician's intention. Furthermore, even when agreement occurs questions about the morality of the action remain. (ii) The moral equivalence of PAS with treatment refusal is neither (a) necessary nor (b) sufficient for its moral justification. (a) For the sake of argument, let's agree with the respondents that cases of treatment refusal are morally equivalent in that both the patient and the physician seek and intend that patient die, and that the physician deliberately and intentionally provides the means to do so. Nevertheless, it is still a meaningful question to ask whether the actions were justifiable, and this question cannot, therefore, be reduced to the equivalence of PAS to refusal of treatment. (b) On the other hand, if we agree with petitioners that cases of PAS are not morally equivalent to refusal of treatment, there may be independent justifications for assisting in the patient's death. For example, that individuals have voted overwhelmingly to grant physicians this responsibility. (iii) A focus on the specific elements of the action ignores the more important matter of the quality of the patient's life. To put this another way, we need to address the broader question as to why so many patients and physicians support PAS before we seek to decide whether PAS should be morally and legally justifiable.
Solomon Benatar, University of Capetown, South Africa
While many lessons have been learned from history unethical medical research on humans regrettably continues, even in highly privileged countries. It is against this background that attention is now being focused on the ethics of collaborative research in "developing" countries. On the one hand there is concern that universal ethical standards should be adhered to for all research on humans world-wide. On the other there are concerns about imperialistic imposition of requirements that are culturally specific and about the potential for exploitation by researchers from industrialized countries. The question being posed is whether there is any justified need for context specific modifications to the International Guidelines for Biomedical Research Involving Human Subjects in some countries. This debate involves considerations of Universalism, Imperialism and Context
Clearly there are some things that we all agree are universal. These include not only the physical laws of nature but also such issues as respect for human dignity (as reflected in the Universal Declaration of Human Rights), and ethical principles such as "do no harm", and "be fair". It is also clear that imperialism was not only a political a force which existed during the age of Empire, but that it is an ongoing feature of hegemonic world views, civilizations and religions. In the world of economics it is revealed in the forces of globalisation. The contexts within which people live, get ill, receive health care and die vary enormously across the world. Striking differences may even be present between countries that are in many ways similar; for example in access to and delivery of health care in Canada and the USA. There is lack of consistency and clarity in the ways in which we balance considerations of Universalism, Imperialism and Context. The relevance of these issues will be discussed in relation to research on the use of drugs and vaccines for HIV infection.
Ruth Macklin, UNAIDS Ethical Review Committee, USA
The joint United Nations Program on AIDS (UNAIDS) sponsors research on HIV/AIDS around the world, provides technical assistance to governmental agencies and non-governmental organizations, and issues guidelines and policy statements related to the global pandemic. The Ethical Review Committee (ERC) conducts prospective reviews of all UNAIDS-sponsored research protocols, advises the Director on a variety of ethical and policy concerns, and explores specific ethical issues as they arise in the conduct of research or service delivery. Over the past year, officials from UNAIDS, with the assistance of the Chair of the ERC and other committee members, organized and carried out a series of regional workshops in preparation for the initiation of HIV/AIDS vaccine clinical trials in several countries. This series of workshops culminated in a meeting in Geneva in June 1998, the purpose of which was to review a draft ethical Guidance Document for vaccine trials. The main conclusions from these meetings are summarized in this presentation.
Makina Kato and Darryl Macer, University of Tsukuba, Japan
Because AIDS is a usually fatal and usually sexually transmitted disease it has provoked strong images in people's minds, also reinforced by the media. To examine the images people have towards AIDS, a question was asked on what people thought of persons infected with HIV or had AIDS. The International Bioethics Survey was performed in 1993 and this was one of the 32 open questions that was included (Macer, 1994). In 1993 the comments had been categorized, so our purpose here was to explore more deeply the negative attitudes towards these persons, by examining keywords and concepts. The keywords used to explore negative attitudes were: deserve/serve/ask for, fruit, fault, punish, sin, God, ethic, moral, responsibility, promiscuous/promiscuity, loose, prostitution, homosexual/gay, drug/needle, innocent.
Some selected comments to this question by public and students from Australia, Hong Kong, India, Israel, Japan, New Zealand, the Philippines, Russia, Singapore and Thailand will be discussed. Overall about one sixth of the 6000 persons who answered the International Bioethics Survey in the ten countries said that their feelings towards persons with HIV depend on how they contracted the disease, and that if it was acquired through use of drugs, or through sex, it was their own fault. There are some interesting differences, for example, in Singapore 8% of comments included the term "innocent" and 13% included the terms "deserve/serve/ask for", compared to 2% and 3%, respectively, in the next highest country. The term "homosexual/gay" was used by 4-5% of persons in Australia, Hong Kong and New Zealand, but by only 1% or less in other countries. The metaphors that people have, can continue to maintain discriminatory attitudes towards persons with HIV. The results of this study suggest that the public education campaigns to reduce HIV spread, may have actually increased discrimination against persons with HIV and AIDS, if the metaphors expressed in this survey represent the behaviour of persons.
Florencia Luna, University of Buenos Aires, Argentina
The recent debate concerning AZT trials with HIV pregnant women in Sub-saharan Africa exhibited some problematic issues regarding clinical trials in developing countries. The main issue under consideration was the use of placebos, but there were also criticisms of ethical imperialism suggesting that ethical standards must not be established by developed countries. AIDS vaccines face even more difficult challenges in relation to safety, adequate counseling, provision of therapy if a person gets infected, etc.
In this paper I will consider some of the ethical issues presented by clinical trials in developing countries. I will analyze some of the arguments given in the AZT debate and, I will argue for the need for caution and the maintenance of safeguards such as the ones proposed by Helsinki and CIOMS.
R. Dhanapriya and Jayapaul Azariah, University of Madras, India
It is estimated that in 20 years since the appearance of the Human Immunodeficiency Virus (HIV), about 30 million people have contracted HIV and 6 million people have died due to acquired Immune Deficiency Syndrome (AIDS). Since 90% of those infected are found to be in developing countries and India tops the list it is necessary to obtain public health insights and their priorities with reference to disease epidemiology and control.
A detailed questionnaire was prepared consisting of 24 questions spreading over areas such as general mode of infection, source of transmission, therapy for AIDS like gene therapy, organ transplantation, prevention and awareness, personal and ethical issues. The responses of educated respondents (ER, see abstract 1A1) were analyzed on the basis of an arbitrary cut off percentage of 20%. Any question where the responses were 20%+was considered significant. Similarly a reduction or an increase by 5%, after an exposure to bioethics education in AIDS was considered as an impact due to education and these were considered for discussion. On this basis, in 6 out of 24 (25%) issue based questions the respondents were unaware or unable to decide. Similarly, 20% were opposed to the statements made in the questionnaire and 50%, were in agreement. Thus the survey revealed that educated community of Tamil Nadu considered AIDS as a contagious disease as against infectious/communicable diseases.
The survey revealed that education is necessary to clear many misconceptions among the educated regarding above three common terms. In few cases like decline of morals, which causes the spread of AIDS, premarital diagnosis, organization of AIDS rehabilitation centre, need to create awareness and acceptance of clinical trials on oneself there is a dilemma in the minds of people because some of those who agreed originally have shifted to disagree or strongly disagree category. Though the shift was not towards 'I don't know' category, it clearly shows that in-depth exposure through bioethical education has to be given to the public. In a few cases like economic stability, being affected due AIDS, though there was 42% agreement and 20% I don't know category, after the course the agree category increased to 59% and I don't know" category to 33%. This clearly indicates that some people who originally disagree have shifted to both agree as well as to I don't know category which clearly shows the instability and indecision in these areas due to lack of education.
Though education is needed to change the attitude of people we can also note that education given through a short term course has cleared some opinion/attitude in the minds of people regarding AIDS. In some areas like decline of morals, causes for the spread of AIDS, confidentiality of medical reports, the economic stability of a country being affected due to AIDS, therapy for AIDS like gene therapy and organ transplantation, premarital diagnosis, rehabilitation centre for AIDS patients, informed consent being distorted due to lack of public education and participation, the urgent need to create awareness, and AIDS as a more of an ethical problem and less of a medical problem, are dilemma areas for the educated. The ER have a strong feeling that handling an AIDS patient physically there is a high risk of infection as inferred constancy of percentage in 'I don't know' category before and after. Any education reform must address issues like epidemiology of HIV, health economics and the multi various human needs of an AIDS patient. A few respondents have performed and fixed opinions in their minds. Thus suggesting that a carefully structured and strongly designed educational Programme has to be developed to change the performed the psycho-social and attitudinal positions.
Kaoru Ushijima, Chiba Museum of Science & Industry, Japan
Biotechnology has made rapid progress in this century. In recent years people have become very interested in the genetic recombination of foods and the cloning of animals in biotechnology. They are afraid that biotechnology would generate other new creatures, and therefore it would greatly influence the future of mankind. In 1997, Chiba Museum of Science and Industry held a special exhibition on biotechnology that would generate other new materials. We were one of the first museums to focus on " Life" , and dealt with the history of science and technology from the viewpoints of both life-science and technology. I will report on the attitude of people toward the exhibition and the progress of public comprehension of biotechnology.
Baby Flankit Vittabai and Jayapaul Azariah, University of Madras, India
"When you can measure what you are speaking about, and express it in numbers, you know something about it, but when you cannot measure it, when you .,an not express it in numbers, your knowledge is a meagre and unsatisfactory kind. It may be the beginning of knowledge but you have scarcely in your thoughts advanced to the stage of Science" William Thomson Lord Kelvin (1891)
The maturity of a society depends upon the individual's decision making. Education of decision making is essential for the future bioethical maturation of a society in 2000AD where persons have to make increasingly more decisions. People may not have a simplistic view of Science and Technology and can often preview both with benefit and risks. The balancing of good and harm is necessary for bioethics.
India proudly talks about its customs, traditions and its ethical values. However, the people are not well educated about the issues that arise from biological research, positive attitudes towards life in developing coping skills with adverse situations, valuing the privacy of others or themselves, balancing the benefits and risks of using pesticides or medicine, genetic engineering, genetic screening and gene therapy. The study was carried out on high school students in the age group of 14-18 with a view to assess "how much of bioethics is imparted into their life style by the curriculum?" In order to cover all the economic sectors of the society the study was conducted at both Government/ Corporation Schools (aiming at the poor and the lower middle class) and the private schools (aiming at the upper middle class and the rich) in urban and rural areas. Sampling was done at random in 20 schools, by choosing 25 students and 5 teachers from each school.
Children in government schools have less knowledge about any aspect of bioethics when compared to the private schools. Generally students do have a vague idea about the ethics to be followed or they are highly biased by the parental influence, regarding religion, customs and traditions. Their opinion on moral values was also confirmed by interviews which provided a clue to their well established opinions and their ability to modify truthful answers to untruthful ones. The role of anti-social elements in shaping their bioethical and moral values was also assessed. Both teachers and students valued the contribution of Science and Technology. There was a strong agreement that the natural environment has a valuable property that human should not tamper with and they supported the recycling process. They showed a good acceptance for genetic engineering, protoplasmic fusion and in vitro fertilization (IVF). Students had a very vague idea about genetic servicing and gene therapy. Students were aware of AIDS and valued privacy of a person and expressed a strong belief in the concept of rehabilitation. They had sympathy and concern for people with genetic and marital disease. There is a strong support for teaching students about the ethical legal and social issues associated with science and technology. A number of teachers proposed that a curriculum in bioethics should be developed and be taught in many classes at all levels particularly at the Higher Secondary and College levels. Such an effective approach could be possible when proper text books and teaching materials are provided.
Ann Lewis Boyd, Hood College, USA
Teaching Bioethics is an opportunity to join with students in a search for the truth using the deliberative process exemplified by the Socratic debate. Graduate students in Religious Studies at Mahidol University in Thailand and undergraduate students at Hood College in the United States participated in separate courses in which the foundation method was case study and participatory discussion. The case method provides a forum for the deliberation of issues and principles masked within complex moral dilemmas where the rights and common good of individuals and societies conflict. The range of topics and issues are selected from primary literature in which conflicting moral views are elaborated to enlarge individual perspectives and to create an opportunity for students to engage in deliberative discourse. The issues include distinctions about life and death; allocation of scarce resources; health care reform; medical experimentation involving human beings; proxy and informed consent; regulation of scientific discovery such as cloning; and infectious diseases, epidemics, and clinical trials for new drugs and vaccines in a global context. Fundamental concepts must be carefully dissected apart from the human drama of each case. The ethical moral standards of Natural Law, Respect for Persons, and Utilitarianism are contrasted by processing one case study by dividing students into three groups and assigning a different moral theory to each. Each student must write the case study independently, constructing a rule which would be applicable to a wider cluster of similar cases. In the subsequent class, the students attempt to reach consensus in which each participant is challenged to justify the proposed action according to a reasoned analysis that would appear rational to those bound by the action. In the Socratic tradition, the diversity of opinion expressed illuminates the common moral concerns. Consensus is rarely reached but mutual respect for diverse opinions is modeled. Each person has the opportunity to increase her understanding of the scientific and philosophical issues involved in each of the issues and theories. In the praxis of respecting the diversity of viewpoints, each broadens her own perspectives. The intent is to encourage each student to weigh values and views different from her own, to recognize in the various principles and maxims the devotion of purpose to the common good, and to respect the moral merit within incompatible values. Characteristic of many moral conflicts is an incomplete understanding of the source of the disagreement. Artful negotiations revolve around central issues and principles that lead to clearer critical analysis and resolution. It is interesting to compare the conclusions reached by the Thai and American students. Both classes find it permissible for a patient who has terminal cancer to refuse further treatment, and the physician to respect that decision. Neither class could agree on how to achieve equality in health care in their respective countries where resources are limited and minimal standards of care are not universally available. In both classes it was clear that students who read, write, and debate the merits of their proposed ethically permissible action/rule make significant progress in their depth of knowledge about complex medical and moral issues, gain self-confidence in deliberative debate, and expand their respect for the pluralistic values of global citizenship.
George Agich, Cleveland Clinic Foundation, USA
The story of bioethics and humanities involvement in health profession's education could be told as the struggle to wrest time in the curriculum from the incredibly powerful basic and clinical biomedical sciences. This strategy is an understandable necessity for fledgling programs in bioethics supported by medical education funds. In this effort, bioethics has joined forces with other reformist elements in medical education to participate in physician/patient relationship, interviewing, or basic clinical skills courses, in addition, to developing formal bioethics sessions. Recent work on the concept of the hidden curriculum suggests that a significant amount of values inculcation occurs outside the formal curriculum. In this paper I explore the following questions against the concept of the hidden curriculum: What objectives should guide bioethics education programs for health professionals? Is the formation of character, communication styles, and habits of mind central or peripheral for bioethics education? Are differences in the perception of ethical problems or dilemmas in medicine influenced by values and attitudes shaped in the hidden curriculum? Are there significant differences internationally in what is learned and taught outside the formal curriculum? What implications does the hidden curriculum have for bioethics education.
Rosario A.T. Alora, San Tomas University, Philippines
Healthcare providers are faced with difficult decisions caused by scientific advances in a finite world. This curriculum was developed to help the healthcare provider develop: 1) a sensitivity to the bioethical aspects of the cases,, 2) an ability to critically analyze cases and apply bioethical principles, 3) the commitment and courage to act appropriately. It is unique for two reasons: it is a common curriculum for all healthcare providers i.e. physicians, nurses, midwives, dentists, physical therapists, opticians, etc... it is relevant because although references are international, cases are real and local.
An accompanying handbook contains eight chapters: the importance of Bioethics, personhood, the health care calling, basic ethical principles, major bioethical principles, approach to a bioethical issue, applied bioethics and the virtues of a healthcare provider. Each chapter includes an introduction tot he topic, learning objectives, learning activities, evaluation and reinforcement suggestions.
Young Mo Koo, Seoul National University, Korea
As physicians in other countries do, most Korean physicians in clinical settings find themselves puzzled when they make decisions about withholding treatment of terminally ill patients. Upon patient and/or family request Korean clinicians had routinely followed steps for hopeless discharge of terminal patients, before three medical doctors from a public hospital in Seoul were arrested and charged with murder in early 1998. This paper delineates this unprecedented case whose trial is in progress, and causes great concern for all mid-to-large sized medical institutions in Korea. This paper reviews current Korean statutes regulating steps for hopeless discharge of terminally ill patients, followed by discussing unique attitudes of the terminal patient's family in Korea towards the death of the patient. This paper concludes with an analysis of a survey in which 26 Korean physicians give their opinions on the limits of treatment of terminally ill patients.
Xu Zongliang, Shanghai Medical University, China
Confucianism, Taoism and Buddhism, as the embodiment of Chinese traditional culture, have their respective views on the life and death, but their lists are alike, that is to advocate living, love life, evade talking about death. These views have exerted a great influence on the Chinese for generations, and become the distinctive mentality of the Chinese nation on life and death. The above mentioned mentality on life and death also contains an important idea: good living and good dying. that means people are not only to live in good health but also to have long life until dying a natural death. They key purport is to keep people in good health. In china, it's said "dying in peaceful and happy situation"' which has a meaning similar to the original meaning of "euthanasia". but the modern meaning of "euthanasia" is to assist death mercifully while having no other way to save life. The Chinese traditional outlook on life and death gives us a revelation of striving for Euthanasia in its original meaning, living in good health until dying a natural death happily, so as to enable the life to display a complete and perfect significance.
Tia Powell, Columbia University, USA
Ethical Physicians in all nations adhere to the principle of respect for persons. However, the practical application of this principle leads to different practices in different cultures. A case will illustrate differences in cultural beliefs about informed consent.
Case: A 40 year old deaf Polish man suffers from renal failure and severe peripheral vascular disease, and has had a prolonged and painful hospitalization in the last year. He is of normal intelligence and lives independently, though he relies greatly on his older sister. He now requires a life-preserving leg amputation. His sister is enraged when the doctor talks directly with the patient, rather than letting the sister forgo treatment on his behalf, as she had planned. The initial approach in the American hospital is simply to tell the sister she is "wrong" in her approach to her brother's care. A more thorough analysis allows the physician to bridge profound differences across cultures in the way families and doctors balance between beneficence and autonomy. Some Western medical ethicists suggest that their way of interpreting such values is invariably correct. Those who differ from the standard Western model, emphasizing individuals over families, are thought likely to change their views with further education. However, true respect for autonomy demands a more sensitive approach to differences in its interpretation. Cultures may wish to adapt practices that respect their traditional values, while also acknowledging the importance of autonomy.
Jay A. Jacobson, University of Utah, U.S.A.
End of life care is difficult to define and evaluate. It must meet the diverse and particular needs of patients and their families. It is constrained by the availability of effective technology, skills, and financial resources. One way to evaluate care of dying patients is to note where they died, what kind of treatment they received, and how much was spent on it. such data are available for individuals enrolled in Medicare, the program responsible for health care of nearly all Americans 65 years old or older. when compared to medicare enrollees in the rest of our country, such individuals in Utah were less likely to have had their death occur in a hospital (23% vs. 35%), or to have been in an ICU (23% vs. 31%). Those who were hospitalized spent less time in the ICU's (1.3 vs. 2.4 days), less time in the hospital (5.1 vs. 11.3 days), and had less spent on their treatment ($6,700 vs. $9,460). We cannot account for these differences by variation in disease incidence, supply of hospital beds, availability of Hospice services, or the rate at which these services are used. Our collaborative Partnership to Improve End of Life Care in Utah I trying to understand the reasons for the differences and to develop benchmark indicators that will help evaluate rather than just describe end of life care. Our hypotheses include 1)the large number and close proximity of relatives who are willing and able to participate in the care of persons who are dying, and 2) Prevalent social, cultural, and religious beliefs about death and what follows it that mitigate against sustained, aggressive in-hospital treatment for older individuals who are likely to die despite such treatment. Our benchmark indicators will likely include patient and family judgments about the appropriateness and adequacy of end of life services that include healthcare facilities, pain management, information, and behavioral support.
Jocelyn Downie, Dalhousie University, Canada
There has recently been a flurry of activity in the area of assisted death in Canada. We have seen a number of cases in which this issue has arisen in a very high profile and divisive way (e.g., Sue Rodriguez asked the Supreme Court of Canada to find the Criminal Code prohibition of assisted suicide unconstitutional, Robert Latimer was convicted of second degree murder in the death of his severely disabled daughter, and Dr. Nancy Morrison was charged with first degree murder in the death of a terminally ill patient). We have also seen law and policy responses to these cases (e.g., a report from a Special Senate Committee on Euthanasia and Assisted Suicide and Bill S-13 "An Act to amend the Criminal Code (protection of health care providers)" originating in the Senate of Canada).
In this presentation, I will provide the audience with an overview of the current status of assisted death in Canada. This overview will include information about the incidence of assisted death, public opinion, health care provider opinion, and the law. I will then argue for law reform in the direction of a permissive regulated regime with respect to assisted death.
Peter A. Sy, University of the Philippines
This paper adumbrates some philosophical and ethical issues in death and dying. Special attention is given to competing standards of determining death, especially brain death, as focus of a continuing debate on whether universal determination of death is possible in a multicultural society like the Philippines. Some medico-legal concepts of death are also examined, but the discussion brings to the fore some conflicting tendencies of two general forms of medicine (namely, biomedicine and traditional or indigenous medical practices) in addressing the issues of death and dying. Biomedical criteria of determining death tend to be technological and alien but are focused in a more or less coherent medical discourse. Traditional standards of death are, on the other hand, diverse and diffused but are well rooted in the religious and indigenous life world of Filipinos. The conflicting tendencies of the two medical traditions are striking in ways practical issues (like organ donation, transplantation, terminal life support system, and insurance) are dealt with. The promise of resolutions, however, lies in what these medical traditions have to offer and in what they might need from each other. The technological criteria of biomedicine are insufficient partly because the problem of determining death is fundamentally cultural and philosophical. Traditional medical practices, though closely intertwined with Filipino culture, lacks the vocabulary in dealing with technological and medical innovations and, therefore, may have to appropriate some western biomedical views. In the final analysis, Filipino bioethicists should act as intermediaries of competing medical discourses, facilitate dialogues, and help imagine the space for a multicultural medicine.
Kaori Sasaki, University of Lancaster, UK
A technology (c.f. Knowledge in Foucault) conceives ideology as embedded within a framework of our perception, directing people to recognize matters only within that setting. The admission of brain death as a criterion for actual death, organ transplant from the brain dead, and the practices of informed consent and of living wills are not exceptions to this tendency. Japanese society has been engaged in debate about the adoption of these technologies for several decades, and as a consequence much has been revealed about the nature of the knowledge, particularly in terms of hegemonic power relations. It has also provided different knowledge, that is alternative perspectives on the issue.
Three main significant matters could be picked out as deriving from the above two effects. The first one is new clinical methodology which can cure an almost brain dead person. The second is that this issue has been argued within the conventional political dichotomy used for Japanese cultural identity: East vs. West, Tradition vs. Progress or Virtue vs. Vice. The third is the significance of dying in our everyday life. However, in this paper, I will examine only the third point, partly because this small session could not allow me to explain all three. I will analyze the second point in another session of this conference, and medical professionals could introduce the first point to the audience better than I, as a sociologist, could.
The focus of this presentation, therefore, is the essence of our death experience, which is based on human relationship between the dying and the living. While bioethics has considered death in a general way, that is my and his/her/their death with dignity and autonomy; recognition of the importance of the second position in death, that is, experience of the nine death becomes a key issue in Japan. This reveals several problems in relation to death which bioethics would rather esteem than criticize. On the other hand, this argument misunderstands the reason why family relation is important for death in a modern society, which leads to further misunderstanding. Hence, I am going to clarify this new point as well as to contemplate future risk. In other words, this examination will not focus merely on the issue of brain death. Rather it will explore the wide- ranging effects, and will thus, I hope, contribute beyond this issue, to global bioethics.
Tetsuo Furukawa, Tokyo Medical and Dental University, Japan
"It will be no less absurd to maintain the absence of consciousness in an animal because he has no brain, than to insist it impossible to feed himself because he has no stomach." (Henri Bergson). Although quite a few discussions have been repeated on brain death, the one completely neglected so far is whether the brain-dead are really unconscious. Today, organs are transplanted from the brain-dead on the assumption that they are unconscious, but there are several phenomena suggesting that consciousness remains in some of the brain-dead. Nearly a century ago, many experimental studies were done on various animals whose cerebrum is surgically removed. The symptom common to all these animals is that outputs are abolished, while inputs are retained. In clinical human cases, we sometimes observe the similar phenomena, which suggest that consciousness remained in patients diagnosed to be brain dead. Even if the surface EEG is flat, active waves may be recorded in the intra-ventricular leads and some of the patients completely recovered. Brain death is decided by scientific methods, but consciousness cannot be assessed by today's science. Therefore, no response in any mechanical method never means unconsciousness. Various other data will be presented and the question shown in the title will be discussed. If organs are removed from the brain-dead with consciousness, it is a non-permissible sin, but the possibility cannot be denied. "Can we believe, without foolish self-conceit, that the future will never judge us as we judge the past?" (Ernest Renan).
Kenichi Oi, Mekai University, Japan
In Japan an organ transplant law took effect in October 1997. Organ transplantation from brain-dead donors was admitted legally. However there has been no donation of organ from a brain-dead patient since last October. We would like to show the obstacles to organ transplantation from a brain-dead patient in Japan. The conditions of removal of organs from brain-dead donors are strictly regulated by the law as follows: (1) a donor must have expressed two kinds of prior written intentions of donation of organs and acceptance of a diagnosis of brain death. (2) Family members of the donor have agreed with these intentions. (3) a child under age 15 can not donate organs.
Only 50 % of people accept brain death as human death and only a part of them accept brain death of the family members as human death. There is no cultural consensus of the opinion that brain death is human death. Japanese people are convinced that a dead body looks pale, but brain-dead patient shows a living complexion due to the use of a respirator. That's why family members reject donation of organ from brain-dead patients.
Japanese people have strong doubts about organ transplantation. The first heart transplantation was conducted in 1968. At that time, the chief surgeon was accused of murder, because brain death of a donor was not strictly diagnosed. Patients and their families are doubtful whether a physician serves the patient fully or diagnosis of brain death is strictly made. The intent of a deceased to donate his organ to be used for the purpose of organ transplants shall be respected. However, it is lawful that the family members can reject it. Accordingly, this concept is still not widely accepted.
However the shortage of organ donation is forecasted. We should make efforts to develop alternative medical treatments which don't need human organs, and physicians must make efforts to get reliance from people in medical care. Moreover, it is necessary that we enlighten people on views of a dead body, death and life.
Alireza Bagheri, Center for Medical Ethics, Iran
In this paper I explore the Islamic views on "brain death" Issue in three parts. First, definition of death in general; in this part, the Islamic views on death as expressed on Koran and Hadith, as the main sources of Islamic teaching, will be discussed. The views of Islamic philosophers, Theologians, Gnostics, Jurists and Medical scientists (such as Avicenna, Tossi, Maulana jallaladinand Imam Khomaini in regard to death will be covered.
In the second part. The implication of those views on brain-death will be explored. I will discussed the issue and will contrast-views of scholars who believe on brain death as a death and those who do not believe. The third part will cover the organ transplantation and brain death. Following related issue will be explored and discussed, transplant of organ from Corpse, transplant of organ from brain deathand the views of Islamic scholar who allow transplant of organ from brain dead and those who do not allow.
Ruth Macklin, Albert Einstein College of Medicine, USA
If human rights is a legitimate concept, at least some ethical values must be universal. Either we must altogether deny the legitimacy of the concept of human rights, or else accept the possibility of global bioethics. Different countries or regions of the world may assign different priorities to ethical values, but all must accept certain fundamental values within the framework of human rights. The 1994 ICPD Conference in Cairo demonstrates the recognition of reproductive rights as universal and as deserving the status of human rights.
Darryl Macer, Eubios Ethics Institute, Japan/New Zealand
At the end of the congress I want to ask the simple question, whether the Beatles were right when they said "All you need is love?". A new language is proposed for bioethics, based on a foundation of the universal ideal, love. Love is the strongest force in the universe, as Gandhi said. We can consider the four principles of love bioethics, as self-love (autnomy), love of others (justice), loving life (non-maleficence) and loving good (beneficence). The challenge is for us to do what has been talked about around the globe throughout human history.
Daniel Wikler, University of Wisconsin, USA
Bioethics has become thoroughly internationalized. Issues in bioethics are the object of study and legislation the world over, and many of the issues on the agenda of this Congress transcend national borders, defying solution at the country level. The IAB serves as a forum for international scholarship, and the Summit meetings of the national bioethics commissions permit some coordination of official bioethics bodies. Still, the world lacks the kind of international cooperative agency which operates in fields as varied as fisheries and atomic power. Should bioethics be served by such a body, and should WHO or another suitable agency take on this role?
Akira Akabayashi, Nobuko Fukatsu, Ichiro Kai 1), Hirokatsu Kitai 2),
Hisao Kato 3), Kazumasa Hoshino 4) [1) School of Health Sciences & Nursing, The University of Tokyo, 2) Saitama Chuo Hospital 3) Keio University 4) Kyoto Women's University], Japan
Since the establishment of the first ethics committee in Japan in 1982, the growing number of ethics committees both in medical schools and general hospitals indicates that significant changes have occurred in the decision making process in the clinical setting. The purpose of this paper is to 1) describe the evolution of the ethics committee system in Japan by presenting the results of two recent surveys to medical schools (in 1995) and general hospitals (in 1996); and 2) to examine whether the ethics committee system in Japan is unique.
(1) Survey to medical schools. A self-administered questionnaire was sent to the directors of ethics committees of all 80 medical schools, asking about the current status of the committee, such as the frequency of meetings, topics discussed, member constitution, and attitudes toward ethical problems. The recovery rate was 100%. The main roles of the committees were: ethical review of medical research on healthy subjects or patients; policy or guideline making; issuing certifications to academic journals. The problems they currently faced were: their legal and ethical responsibilities; financial issues; difficulties with member recruiting; no uniform decision making criteria or standards among the medical schools.
(2) Survey to general hospitals. A self-administered questionnaire was sent to directors of 3,098 general hospitals, asking about the presence of ethics committees, attitudes toward ethical problems, and their experiences. A complete survey for hospitals with more than 300 beds [group A]; 20% random sampling for hospitals with 100-299 beds [group B], and 20-99 beds [group C]. The recovery rate was 44.3% (51.0% in group A, 42.5% in group B, 34.6% in group C, respectively). Ethics committees have been established in 24.4% of group A, 5.7% of group B, and 2.0% of group C. 13.2% of the total respondents answered they had certain guidelines for patients such as Jehovah's Witness who refuse blood transfusions because of their religious beliefs. The necessity of ethics consultations for individual cases as well as education was highly recognized by all groups.
Some of the problems raised by the respondents may be peculiar to Japan, while some may be common with other countries. In spite of a relatively high number of formally established ethics committees in Japan, the roles and responsibilities should be further explored and clarified in order to formulate an appropriate ethics committee system for ethical decision making in the clinical setting.
J. Glasa, J. Bielik, J. Dacok, J. Porubsky, Institute Medical Ethics, Slovakia
In Slovakia, bioethics was developed as a modern theoretical and medical practice oriented discipline after the so-called Velvet Revolution in the year 1989. It was born as an initiative of self-educated physicians, theologians, philosophers, and members of other disciplines, that survived and grew up scientifically and morally in the underground or in privacy. It embodied in its protagonists different traditions of the medical ethical thought inherited from the past. From the very beginning it has been enriched by the intellectual input of the western traditional and modern (and 'postmodern') philosophical thought. Soon on, the original input of the research and study efforts in the field, as well as the work of national research institutions and various professional and scientific organizations became visible. Since 1990 institutions of bioethics were created in a step-wise manner: Central Ethics Committee of the Ministry of Health (1990), Chair of Medical Ethics of the Postgraduate Medical School (PMS) in Bratislava (1991) - later on developed into the Institute of Medical Ethics and Bioethics (IMEB) of PMS and the Faculty of Medicine of the Comenius University in Bratislava (1992). Research ethics committees were set up in the research institutions and major hospitals in the country, according to the guidelines issued by the Ministry of Health (1992). Medical Ethics & Bioethics (an international journal, quarterly, bilingual (Slovak - English) was started (1993). First texts on medical ethics for university students (1993) and on nursing ethics (1998) in Slovak language were written. Postgraduate (since 1991) and regular undergraduate education (1992) of health care professionals (doctors and nurses) was established. Several international congresses, conferences and postgraduate courses were held. Multiple international contacts, exchange and collaboration were developed simultaneously.
J. Glasa, J. Bielik, J. Dacok, J. Klepanec, M. Mojzesova, J. Porubsky, L.Soltes, Institute Medical Ethics, Slovakia
Research ethics committees were established in research institutions and major university hospitals in Slovakia (SR) since the year 1990 within the reform of a more centralized system of the scientific and ethical review, that existed and was backed by specific regulations for decades before. This process reflected the reform of health care and biomedical research system, as well as the integration efforts of SR towards the various European political, economical, cultural, and biomedical research structures. Recommendations and regulations of European Union and Council of Europe served as models for developing national guidelines and regulations. This process was strongly enhanced by publishing of the Ministry's of Health guidelines for the establishment and work of ethics committees (June 1992). In parallel, the requirements and principles of Good Clinical Practice were broadly implemented in practice of clinical research. These developments were backed a few years later by the necessary progress in health legislation (1994, 1997), and the new 'Law on Drugs' (1998).
Ke Binzheng, The Association of Medicine of Xicheng, China
The Hospital Ethics Committee (HEC) has been accepted generally. The function of HEC includes: 1) HEC is set up for the patients. The dignity and right of the patients should be defended by HEC. 2) The activities of HEC keep closer relationship with the clinical practice of the hospital. The setting up of HEC will take great benefit to the proper application of medical science and technology, so as to promote its healthy development. 3) HEC could also accelerate the construction and perfection of life laws. 4) HEC is beneficial to spreading the knowledge of medical ethics and bioethics to the medical personnel and the public. It can promote the modernization of the hospitals.