The role of a biomedical NGO in public policy

The CIOMS is an international nongovernmental scientific organization established jointly by the United Nations Educational, Social, and Cultural Organization and the World Health Organization in 1949. It is a federation of nongovernmental international societies or unions representing specialized branches of medical science and practice. It also has national members, usually national medical or scientific academies or research councils representing various branches of biomedicine. The CIOMS has been tackling the ethical, legal, and social problems of biomedicine, particularly since the adoption in 1968 of the resolution in the U.N. General Assembly on "the protection of the human personality and its physical and intellectual integrity in the light of advances in biology, medicine and biochemistry" (resolution 2450-XXIII, December 19, 1968).
The use of the term bioethics has become popular since the end of the 1960s, mainly in the United States, due to the direct impact of biomedical achievements and the strong concern for human rights of those involved in these areas: patients, researchers, human subjects, and legislators, as well as biomedical professionals.
As one of the NGOs in the field of medicine, the World Medical Association has expressed great concern for the establishment of guidelines for human experimentation, such as the Helsinki declaration of 1964. The WMA's basic concept of professional ethics for physicians was taken from the Nuremberg Code of 1946. Various ethical guidelines for physicians have been declared since then in Geneva (1948), London (1949), and Tokyo (1975), adding to the basic ethical principles for professional communities of medical service. The WMA restricts its concern mainly to the ethical implication for the medical profession, though the WMA and the CIOMS have a common interest in establishing ethical guidelines of much broader scope for biomedical professionals, who are facing rapid progress in biology and medicine, such as organ transplants, the experimental use of human fetal tissue, the problem of experimentation on human subjects, genetic engineering and the creation of new forms of life, and genetic counseling and drug abuse. The CIOMS's approach to these biomedical problems is multidisciplinary in character. The process of drawing up professional ethical guidelines involves the collaboration of the CIOMS with not only a broad range of biomedical specialists in various fields but also legal experts and, where appropriate, civic and religious leaders and nongovernmental organizations concerned with human rights.
In 1978 a joint WHO/CIOMS project, "The Development of Guidelines for the Establishment of Ethical Review Procedures for Research Involving Human Subjects", was initiated. These model guidelines would be a useful tool for member organizations and their countries in setting up public policy on biomedical and health research mechanisms to protect the human rights of the persons involved. In 1979 the Advisory Committee on Medical Research of WHO endorsed a progress report on this CIOMS project, and its first draft was discussed at the CIOMS fourteenth Round Table Conference in Mexico City, in which I participated. In 1981 the CIOMS adopted the "Resolution on International Guidelines for Biomedical Research Involving Human Subjects" at its conference in Manila.
Participants in the CIOMS Mexico conference included specialists in the fields of medicine, biology, philosophy, bioethics, public policy, law, public health, and other areas from more than 30 countries. As a legal scientist, I pointed out the importance of the protection of human rights in these guidelines and new aspects of bioethics not confined to so-called medical professionals. Because the study of bioethics was formed by receiving input from nonprofessionals through public debate in their own communities, not only are professionals providing input to form ethical guidelines, but nonprofessional, lay-public sources also have a very important role to play in contributing to the direction of newly developed areas of scientific research and their application to the safety of the particular community and the human rights of the persons concerned. It is quite reasonable to have lay representatives on professional review committees, such as the Institutional Review Board and the Institutional Biosafety Committee, according to guidelines set up by the National Institutes of Health in the United States.
After his speech titled "Ethical Issues in the Control of Science" at the Conference on Genetics and Law in March 1979, Dr. Daniel Callahan, director of the Hasting Center in New York and a leading philosopher of bioethical issues in the United States, responded to my question, "How do you see the ethical responsibility of scientists in the field of national and international politics?" In his answer, Dr. Callahan said, "It is absolutely imperative that scientists do try to foresee the consequences not only, obviously, of their applied research, but also of basic and theoretical research as well. Once there is any notion whatever of some possible harm to the public, that information should be immediately communicated to the public. In short, I see the scientist as a fundamental moral agent but one who must also be in very close relationship to the public."
The first glimmerings of new ideas, whether good or bad, can be seen by the scientists involved in the beginning. They should be, in a sense, the first people who have an ethical responsibility to call issues to the attention of the lay public. The truth should be shared not only within the professional community but also by the wider community composed of the lay public. The ethical loyalty of the professional is not to the professional community but to the community of the citizenry.
As the philosopher Josiah Royce started in his Philosophy of Loyalty (New York, Macmillan, 1908), one of the most important ethical principles is loyalty to the cause that will give life to the social self by uniting it with others who serve the same cause. According to Royce, "A cause is good, not only for me, but for mankind, in so far as it is essentially a loyalty to loyalty, that is, an aid and a furtherance of loyalty in my fellows." Loyalty, to him, is a great cause. It makes it possible to unite all humankind into one community of service. His notion of community should be reconsidered in the present context of a human community to be developed based on the cause of a new loyalty. I think this cause would reflect and converge on the Universal Declaration of Human Rights of the United Nations (1948) as a good model for international public policy.
The meaning of our global community in the shadow of World War II is explained in the preamble of the Universal Declaration of Human Rights, whose articles develop the concept of respect for the dignity and the rights of persons. Unfortunately, the UDHR has no official binding power on the member states of the United Nations. However, the recent ratification of the International Covenant of Human Rights (International Covenant on Economic, Social and Cultural Rights, 1966, and International Covenant on Civil and Political Rights, 1966) for the implementation of the UDHR by many member states [73 countries] is encouraging. The CIOMS, as an NGO affiliated with the United Nations, is serving the purposes of the U.N. and the UDHR and also the scientific interests of the international biomedical community in general (Article 3-E of the CIOMS).
It is quite obvious to us, living in an age of rapid social change effected by the advancement of science and technology for the manipulation of control of our life, that we should not confine consideration of serious issues to the leadership of the biomedical community and the scientific interests of the international organizations. We are living in a new age of unity and wholeness in order to be loyal to our fellow people. In this sense, I think, the CIOMS has been working successfully and openly with related professionals and the lay public in expanding its realm to bioethical issues relating to the scientific interests of the international biomedical community and the global community in order to establish effective public policies and international ethical guidelines.

The role of a religious NGO in public policy

The WCC has been working actively as one of the official NGOs affiliated with the United Nations. Through its Commission of the Churches on International Affairs, the WCC contributed effectively to the formative process of the Universal Declaration of Human Rights, particularly Article 18, which stipulates the right to freedom of thought, conscience, and religion. There are many NGOs working actively to influence international public opinion through the activities of the United Nations and its specialized agencies.
The WCC is influential as an NGO because of its wide range of member churches, ranging from Orthodox churches to major Protestant churches [Anglicans, Baptists, Reformed Lutherans, Presbyterians, Methodists, Pentecostals, and others], totaling more than 300 member churches representing 400 million Christians in about 100 countries around the world. The Roman Catholic church is officially represented on two of the WCC's commissions. We cannot disregard the reality of the national and international public opinion and public policy formed by NGOs like the WCC.
My point here concerns the issues of professional ethics and international public policy formed by various NGOs that are actually nonbiomedical organizations. There are three issues here. One is the general trend of change without too much adherence to pure "professionalism" in defense of the professional community's privilege and peer-review system. More and more, there is a shift to a multidisciplinary type of open professionalism exposed to public criticism and even judgment on the future direction of professional behavior. Second, biomedical professionals in the framework of religious belief and other ideologies can come together beyond their national boundaries to serve the unity of humankind. And very often the work of NGOs has a more direct effect on national and international public policy than does the United Nations as an intergovernmental organization. Third, there is a new demand for a new meaning and religious interpretation of human life, which is being challenged by the rapid development of science and technology, particularly in relation to the bioethical problems of our age.
As a specialized commission on medical issues, the Christian Medical Commission of the WCC has worked closely with WHO in producing the publication Health for the People, which touches on issues of professional ethics. Between 1973 and 1975, when I was assistant director of the Ecumenical Institute of Bossey, a research and educational center of the WCC, I organized a series of interdisciplinary conferences on biomedical issues and human rights. At the beginning of the 1970s the Commission on Church and Society of the WCC also initiated a series of ongoing projects relating to bioengineering and ethical problems.
Manipulating Life: Ethical Issues in Genetic Engineering, a report published by the WCC in 1982 after consultation with professionals from various fields, such as biology, medicine, law, and theology, includes some recommendations for the formation of international and national public opinion and policy guidelines relating to biotechnology issues. The report discusses "the necessary steps to encourage the appropriate agencies of the U.N., including WHO, ILO, UNEP, [and] UNESCO, to convene a conference to initiate the formation of international guidelines and regulations governing the development and use of bio-technologies" and recommends "that the churches be asked to work nationally and internationally to encourage mechanisms of participation that include affected and interested parties at all levels and stages of policymaking regarding biotechnology".
As I have already mentioned, there is an interchange of power and pressure between the national setting and the international setting. And in the process of forming influential public opinion, the NGOs and various volunteer organizations are performing a very important role in the field of biomedical ethics. For example, the guidelines on human experimentation proposed by the CIOMS and WHO have received serious attention by many member countries. Originally these CIOMS/WHO guidelines were drafted on the basis of direct and indirect influences on government organizations' recommendations from public opinion and policies on bioethical issues in the United States and Western European countries. The declaration on the status of scientific researchers adopted by the General Assembly of UNESCO in 1974 as a kind of international public policy has given a direct impetus to member countries to review the national situations of their scientists. For example, the Science Council of Japan adopted a Charter for Scientific Researchers in 1980. These accomplishments are the result of international and national public opinion and policy for setting up broad professional and ethical guidelines.

Conclusions

Professional ethics are being challenged in many ways because of their narrow approach, their traditional concern only for particular professional interests, and their defence mechanisms against openness and the public. However, the international and national environments have changed radically. To tackle the urgent issues of biomedicine and human problems in the environment, the growing need for a holistic grasp of issues has become obvious. This approach requires suprainterdisciplinary efforts. This is the reason the so-called traditional ethics of a particular profession must change their framework of principles to that of the global community. The professional ethics of a particular profession cannot be truly formed and applied without lay input, that is, without serious consideration from public opinion and public policy. There can be no authentic international professional ethical guidelines in the global community without input from professional, religious, and other NGOs.
This is also true on the national level. In Japan, for instance, the Niwano Peace Foundation organized a series of symposiums and seminars on the life sciences and religion in 1981 and 1982 - the first example of dialogue between the scientific and religious communities on this theme in Japan. In another private initiative, in January 1983 the Japan Medical Research Foundation sponsored a symposium on the theme "Life Science Development and Medicine" at which I delivered the keynote speech on bioethics. On the government level, the Advisory Board for Life and Ethics, made up of various professionals, was set up as an advisory body to the minister of health and welfare and held its first meeting in April 1983. Finally, the International Conference on Life Sciences and Mankind, proposed by Prime Minister Yasuhiro Nakasone in a speech delivered at the School of Advanced International Studies, Johns Hopkins University, on May 27, 1983, is to be held in March this year in Japan. This conference marks the first international initiative by the Japanese government in this field. All these developments indicate the growing awareness of bioethical issues in Japan.
To be truly professional, professionals need ethics. And ethics for professionals in this new age must be based on a wider perspective to be oriented by public policy, both national and international.

This article is adapted from a paper prepared for presentation at the fourteenth World Congress of Philosophy on August 25, 1984, in Montreal.

References

Kimura, Rihito. Seimei sosa jidai to ningen (Humankind in the Age of Life Manipulation). Tokyo, Nippon Hyoronsha. In press.
Krimsky, Sheldon. Genetic Alchemy: The Social History of the Recombinant DNA Controversy. Cambridge, Mass., MIT Press, 1982.
Niwano Peace Foundation, ed. Seimei kagaku to shukyo (The Life Sciences and Religion). 3 vols. Tokyo, Niwano Peace Foundation, 1982, 1983.
Reich, Warren T., ed. Encyclopedia of Bioethics. New York, Free Press-Macmillan, 1978.
Walters, LeRoy, ed. Bibliography of Bioethics. New York, Free Press-Macmillan, 1973.