pp. 136-139 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
4.1. Culture and Community in Bioethics: The Case for an International Education Programme
Francis P. Crawley.
UNAIDS Ethical Review Committee, University of Brussels, Belgium
It is a great honour for me to address you today on the occasion of the UNESCO ABC. The general aim of this meeting is to encourage cross-cultural discussion and strengthen friendships between bioethicists, philosophers, educators, physicians, scientists, lawyers, administrators and the general public in different countries in the world with a special focus on the Asian-Pacific region. As a permanent liaison officer to the International Bioethics Committee of UNESCO and as a member for the UNAIDS Ethical Review Committee, it is a special privilege for me to participate in your discussions. I would like to especially thank Prof. Norio Fujiki for extending to me the invitation to speak today and Prof. Darryl Macer for his wonderful organization of this meeting.
My talk is focused on the need to establish an international education programme in bioethics in order to ensure that the knowledge achieved in science and the values engendered through culture and community are joined without prejudice or discrimination. Bioethics is forward looking. It is rich and varied, multidisciplinary discussion that attempts to integrate scientific understanding and community values into a common and shared perception concerning how we should be.
This discussion has not only been promoted by UNESCO, but at the international global level, it is appropriate to say that it is founded by UNESCO. The Preamble of the constitution of UNESCO asserts that gpeace must be founded...upon the intellectual and moral solidarity of mankindh. From the very onset, UNESCO has had an ethical mission. The promotion of peace and security between nations requires not only mutual understanding and development in education, science and culture, but also a fundamental commitment to ethics: gin order to further universal respect for justice, for the rule of law and for human rights and fundamental; freedoms...h(article 1).
As Mr. George Kutukdjian has recently expressed it, gfrom its inception, UNESCO has been designated as the conscience of the United Nationsh (Cairo). Since the early 1970s UNESCO has been the principle promoter of an ethical reflection at the international level. The final example of this commitment to ethical reflection was the creation of the International Bioethics Committee (IBC) in 1993 by the Director-General, Mr. Federico Mayor. In October, 1996, the Fourth Session of the IBC approved the finalized draft of the Declaration on the Human genome and Human Rights. This week, while we discuss the future of bioethics in Kobe, this achievement of the IBC has been approved by UNESCO General Assembly in Paris.
Following on the atrocities of World War II, the international community has reached increasing agreement on the need to end hatred and acts of indignity. In the areas of human rights and biomedicine, in particular, enormous advances have been realized. These achievements are generally illustrated in international agreements, such as the Universal Declaration of Human Rights from the United Nations and the Declaration of Helsinki from the World Medical Association. More recently, there are the examples of the European Convention on Human Rights and Biomedicine and the just mentioned Universal Declaration on Human Genome and Human Rights. These instruments show a widespread willingness to adopt and accept general principles for protecting and promoting the dignity and liberty of the human person - of the individual person in all situations and circumstances.
However, looking towards the future, something more is needed in bioethics. The growing awareness in society of the power and implications of the life sciences requires a response going beyond laws and agreements formed at the international level. The promise of science increases with its power for transforming life - but so too does its potential threat. Here as well, the high moral ground of established ethical and philosophical discourse often finds itself inadequate or unprepared. Should we test our newborn children for genetic diseases? Should we allow research on fetal tissue? At what point is it legitimate to terminate a life of unending suffering? At what point can we feel safe with respect to genetically engineered crops? Where do we draw the line between research and treatments on cancer patients? How do we weight the life of an unborn child against the certainty of a life of suffering? These are real moral questions. They are not abstract. They arise regularly today in situations requiring a response.
The words to respond to these questions, questions that often pose themselves suddenly and unavoidably, require decisions. This required answer needs to proceed and consider somehow the individualfs confrontation with suffering and anxiety, and it needs to be an integral part of societyfs response to the possibilities opened up by science, technology and medicine. Bioethics provides us with a forum in which to balance such an education: an education in science, in law, in medicine, in psychology, in politics, in philosophy, and in religion. This is an education requiring expertise in many fields, but where the aim is to increase the lay understanding.
Both the Universal Declaration on the Human Genome and Human Rights and the European Convention on Human Rights and Biomedicine indicate the need for such an education. Article 28 of the European Convention reads, gParties to this Convention shall see to it that the fundamental questions raised by the developments of biology and medicine are the subject of appropriate public discussion in the light, in particular, of relevant medical, social, economic, ethical and legal implications, and that their particular application is made the subject of appropriate consultation.h International conventions and legal instruments are only a starting point for realizing the responsibility and solidarity of human kind in issues of bioethics. Cross-disciplinary and pluralistic programmes in education need to be developed and promoted, in order that the general principles underlying the conventions and agreements are realized in scientific and biomedical practices. The best way forward here is perhaps through the development of the ethics committee model.
Article 16 of the Universal Declaration of UNESCO states, gStates should recognize the value of promoting, at various levels as appropriate, the establishment of independent, multidisciplinary and pluralist ethics committees to assess the ethical, legal and social issues raised by research on the human genome and its applications.h This underlines the importance of ethics committees as establishing a fundamental focal point for education. In November, 1995, the General Conference of UNESCO adopted 28C/resolution 2.2. which ginvites the Director-general to provide assistance to those States which may request it for the creation of national bioethics committees to be concerns with the protection of universally recognized rights and freedomsh. Since this specific commitment to assisting in the creation of ethics committees, UNESCO has played a role in the establishment of a national bioethics committee in places such as Lebanon and Tunisia, with preparation underway for Jordan.
Article 16 of the Universal Declaration on the Human Genome and Human Rights is entirely devoted to the importance of ethics committees. It invites States to promote the establishment of ethics committees that are entrusted with the following tasks:
1. to identify the ethical implications of advances in the life sciences,
2. to keep government authorities informed by providing them with detailed advice, and
3. to promote the provision of training and information to the public.
All of these tasks speak to the heart of the concern in ethics committees: these are educational tasks. The aim here is not simply to exchange information, but to develop an understanding that crosses the borderlines of particular disciplines and specific disciplines. Antonio Spagnoto writes:h The ECs [ethics committees] which are now public institutions, deserve special attention; in fact, there very existence indicates the importance of bioethics. The problems addressed by bioethics concern research as well as the welfare of peoplefs lives and cultures. ECs will become increasingly a link between the worlds of scientific research and political and civilian society. In fact, in democratic societies every important decision will have to be the fruit of a synorgy and comparison between scientists, legislators, and the consent of the population. This dialogue will not be easy, and often the legislation will be tempted to comply with public opinion even when it is against its own good, in order to obtain favours and consent. Particularly in this case, the ECs will be a critical voice and a stimulating conscience, as long as they do not allow themselves to become political or exploited, and can remain anchored to the principle of protecting the values of the human person.h The primary advantage to bioethical decision-making yielded by ethics committees is the opening up of a new place ion our societies for discourse in the area of applied ethics. By initiating a multidisciplinary dialogue, this most global approach, ethics committees were able to open a place for discussion of our fundamental concerns outside of discourse to which our institutions had become habituated.
The ethics committee in then seen as the means by which ethics can put into question the attitudes and the norms; and in the long run is able to modify these attitudes and norms through ethical sensitization through the development of a new dimension to ethical discourse in our society, ethics committees have been able to affect the structures of institutions, as well as our individual disposition, towards specific moral situations having a certain organizing regarding the decisions to be made.
The Declaration on the Human Genome states these conditions that need to be met in order for ethics committees to attain their tasks:
1. independent states - allowing them full freedom in their deliberations,
2. multidisciplinary - so as to apprehend to the full range of scientific, philosophical, legal, economic and social issues involved,
3. pluralist - so as to allow the expression of the main ethical and cultural sensitivities.
It is necessary that both international agencies and national, regional and local institutions promote the development of ethics committees based on these principles.
The rapid growth of ethics committees and their increased acceptance by government, science, academia, and industry, as well as the general public, indicates that they have fulfilled a deep-seated need in our communities. As Parizcan pointed out, ethical committees are succeeding in globalizing the discourse of ethics. The multidisciplinary dialogue has allowed the cultural perspectives to be active in all areas of our society, even those considered by some to be somehow outside the reach of ethics: science and technology,
This cross-disciplinary, cross-cultural dialogue and engagement is fundamentally an avocation. As Dougherty has pointed out, avocation is at the hearts of the activity of ethics committees: gInstitutional ethics committees create a vehicle for education on ethical dimensions of patient care. Committees typically have dual efforts in this respect: education of the committee itself through discussion of current bioethics literature, for example, and education of the medical staff and hospital employees, by organizing periodic lectures, panel discussions, and ethics grand roundsh. The dialogical nature of ethics committees provides for a multi-level education. The immediate impact of the dialogue is an education of the members present, physicians educating the members on medical research; research nurses educating the lawyers on the needs of the patients; sociologists educating statisticians on the effects of medical research on society. However, beyond this is the impact of the dialogue on the disciplines themselves and society as a whole. The dialogue and engagement provides not only for our education of the individuals taking part, but it also fortifies and develops the understanding of the individual reviewers and of the community.
That ethics committees can put into question again the attitudes and norms of our societies is based on the fact that the new dimension brought to ethical discourse has been paved with an ever more important characteristic: ethics committees have opened a new plane in our social, political, and legal structures. They have introduced a new place for discussing issues and concerns that had been too sparse in their traditional settings - this is a place for education in matters of life and death for which a traditional schooling and academic training have fallen short in the face of our contemporary biotechnology, media, and political urgencies. In the space created by this place set apart, ethics committees have been able to develop in a more or less unhindered manner their ability to integrate a large variety of perspectives in a conversation that allows ethics the opportunity to transcend the authority of science, law and religion.
It is precisely through their ability to question that they open up the possibility for a richer and broader understanding. By their standing apart, outside the traditional structures of education and decision-making in our societies - though in a place becoming increasingly institutionalized and accepted - they are able to offer a viewpoint that integrates the variety of sectors and disciplines bearing on our decisions. The uniqueness and independence of the place held open by ethics committees is what allows a gputting into questionh that does more than undermine by having their own place (their own topos) in the logic of the discourse, they are able to refresh globally the essential concerns shaping official decision-making.
Still, something more is required. As this UNESCO ABC has already shown, gthere is a need to encourage wide-ranging international debate in which free reign is given to a broad spectrum of socio-cultural, religious and philosophical currentsh (Kutukdjian). The responses to advances in the life and health sciences have been largely structured around national perspectives, as have been ethics committees. However, sciences like mad cows and cloned sheep does not recognize national or even geographical boundaries. Hoffons provides the following warning: gIt is not enough, however, that the debate should continue. The quality must improve, and it must be enriched and illuminated by contributions from a lot of different sources. This is why the importance of full and honest information for the public and of education cannot be exaggerated. Bioethics is, after all, one of the best schools we have for teaching people how complex, varied and rich our world ish. The biosciences and biotechnology require us to develop a new force for education - a force that will need to be - in its own right - more powerful than the force of science, the force of politics, and the force of law. We require in bioethics the force of an education - an international education - that can redress with understanding the border-lines between rapidly fading differences.
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