The International Bioethics Committee
Ten Years of ActivityParis – The discovery of the double helix structure of DNA in 1953 by Francis Crick and James Watson, is celebrating its 50th anniversary. This fundamental breakthrough – which provided the basis of genetic engineering and biotechnology – is featured on the programme for a meeting of UNESCO’s International Bioethics Committee, taking place in Paris from May 12 to 14. The committee itself will be celebrating ten years of activity.
During its tenth meeting, the IBC will devote a round table to the topic DNA: 50 Years after the Discovery of the Double Helix Structure. It will also examine a provisional preliminary draft of an International Declaration on Human Genetic Data, which is due to be presented to UNESCO’s General Conference next October. Other items on the programme include a report from the Working Group of the IBC on the possibility of elaborating a universal instrument on bioethics; an evaluation of the impact of the Universal Declaration on the Human Genome and Human Rights; a session focusing on genomes in the mosaic of the living (universality and specificity); and an overview of the IBC’s work over the past ten years, presented by the three people who have successively chaired the Committee. During this session, French President Jacques Chirac will receive the IBC at the Elysée Palace.
The Director-General of UNESCO, Koïchiro Matsuura, spoke of the IBC’s results and its perspectives at the opening of the session. “Ten years have already gone by since UNESCO decided to rise to the challenge of establishing a bioethics programme. A real challenge indeed: in 1993 the world was paying scant attention to the bioethics debate. Today, bioethics is the focus of debate around the globe. The ICB, through the quality of its reports and thanks to the elaboration and distribution of the Universal Declaration on the Human Genome and Human Rights, as well as the efforts undertaken to implement it, has undoubtedly played an important role in raising awareness of the issues at stake […]. The IBC has also focused attention on UNESCO’s bioethics programme. The ethics of science and technology is now one of UNESCO’s top five priorities. By reconfirming this priority for the two years to come, UNESCO has demonstrated its determination to accompany scientific progress with a process of ethical reflection drawing on the cultural, judicial, philosophical and religious bases of all human communities.”
Today, DNA’s double helix is familiar to all: the unrivaled symbol of genetics, its shape has inspired jewellery design, perfume bottles, and works of art. But its discovery, and those that followed such as the genetic code, has also had considerable impact on our lives. We already owe a number of new drugs (such as synthetic insulin, erythropoietine, and glucocerebrosidase) to DNA technologies, and their contribution, direct or indirect, will continue to increase. These technologies provide us with tests that allow early diagnosis (of such diseases as Huntington’s chorea and muscular dystrophy) and promise custom-made treatment. They also prevent us from making judicial errors (124 in the USA according to the Innocence Project*) and allow for complex identifications (the World Trade Centre victims, for instance).
Since Crick and Watson’s discovery, humanity has learned a great deal about its vital mechanisms, to the point of being able to modify the developmental processes of all species, our own included. The human and social implications of such power are sometimes terrifying. How can we protect ourselves against possible abuse of the powers of biomedical research such as reproductive human cloning, for example? And how can we make sure that progress resulting from these new capacities will benefit everyone? Ethical reflection that goes far beyond traditional medical ethics has become a necessity.
This is the task, which corresponds to UNESCO’s ethical mission, that the IBC has undertaken for the last ten years. It tracks the progress of scientific research, particularly genetics, and defends the principles of dignity and individual liberty against the threat of unethical practices in biomedical research or its applications.
Formed in September 1993, the International Bioethics Committee had a pioneering quality. Even today, in the United Nations system, it is the only consultative body that focuses systematically on bioethics. Its 36 members, appointed by UNESCO’s Director-General for a four-year term (renewable once consecutively) are independent and act in their personal capacity. Culturally diverse, the members are all eminent actors in a broad range of disciplines: doctors and geneticists work side by side with chemists, legal experts, anthropologists, philosophers and historians.
Founded primarily as a forum for the exchange of ideas and information, the IBC also sought to raise public awareness and to identify universal values, in order to reconcile scientific progress with human rights and freedoms. During its first years, it focused mainly on genetic testing and screening, gene therapy, genetic counselling, neurosciences, and population genetics.
The committee was soon involved in drawing up an international instrument concerning the human genome; it produced the Universal Declaration on the Human Genome and Human Rights which was adopted in 1997 by UNESCO’s General Conference, and then endorsed by the General Assembly of the United Nations in 1998. Since then, a number of countries have incorporated the principles set out in the Declaration into their national laws. An evaluation of the applications of the Declaration is on the agenda of the current session.
Until 1997, the IBC, chaired at the time by France’s Noëlle Lenoir, who has since become her country’s Minister Delegate for European Affairs, had no statutes and functioned on an ad hoc basis. Statutes were adopted in May 1998 and stipulate primarily that the IBC’s purpose is “to promote reflection on the ethical and legal issues raised by research in the life sciences and their applications”. At the same time an Intergovernmental Bioethical Committee was created, bringing together 36 representatives of UNESCO Member States. This body makes recommendations to UNESCO’s Member States based on the IBC’s analysis.
From 1998 to 2002, the IBC, presided by Ryuichi Ida, Professor of International Law from Japan, kept abreast of a particularly fertile period for the life sciences – research on embryonic stem cells, sequencing the human genome – by focusing on such problems as the confidentiality of genetic data, pre-implantation genetic diagnosis, and the patenting of genes.
For the IBC’s current chairperson, Michèle Jean from Canada, elected last November: “Although the IBC is like all ethical committees in being independent and pluridisciplinary, it differs in that ethics cannot be viewed in the same way at an international level as it is at the national or regional level. For example, the way in which different cultures see the beginning of life and the status attributed to the embryo, influence the direction and different lines of thinking that will be developed […]. The challenge for such a committee resides in the need to balance the quest for a consensus that will advance the recognition of a common core of human values and the sensitivity that is required to understand the limits of a consensus that must respect diversity, without tipping over into cultural relativism.”
Among the many reports produced during the IBC’s ten years of activity, the one entitled The Use of Embryonic Stem Cells in Therapeutic Research (2001) clearly illustrates the Committee’s approach. As consensus proved impossible in this highly controversial area, the IBC did not take sides but provided the necessary clarifications – by outlining the different ethical arguments and listing ethically acceptable forms of research according to various points of view – to national authorities seeking to legislate in this domain.
Pluridisciplinary and pragmatic, the IBC also strives to be transparent. Its deliberations and the various positions it takes must be accessible at all times to scientists, governments and to all those who want to be informed. The IBC sessions are public and include, in addition to the presentation of reports and summaries of the latest research in particular areas, round tables and hearings that open the floor to civil society. A recent example of this accessibility was the Public Hearings Day held last February in Monaco. It allowed the representatives of ten associations and institutions representing indigenous people, the handicapped, doctors, women and children, as well as the private sector and notably insurance companies and the pharmaceutical industry, to express their views on human genetic data at the time when the IBC was working on a declaration on the subject.
“You can’t stop science, but you can question it,” declares Michèle Jean. “It behoves the IBC to enlarge its transnational vision, to debate and discuss with the scientific community and the public. In the coming years it must present, in more depth, the points of view of different regions of the world and not just those of western nations. It is also up to the ICB to promote, where necessary, the implementation of international instruments to encourage all countries to take an ethical approach, and, thus doing, avoid a situation where those states that are recognized as ethical are not penalized by those that are not. The preparation of an international instrument on genetic data and the consideration being given to the possible elaboration of an international instrument on bioethics is clearly part of this undertaking.”
The IBC’s major project at the moment is the drafting of an international instrument on human genetic data, which is due be submitted for adoption to UNESCO’s General Conference next October. The project has kept a Drafting Group busy for months but is now coming to completion. A provisional preliminary draft *** will be examined at the tenth session before being finalized by a meeting of government experts (June 25-27).
Another project, however, has already been launched: a universal instrument on bioethics. An IBC Working Group began examining the possibility and feasibility of such an instrument in April 2002. In its preliminary report, the group notes: “We cannot but observe the growing number of practices that extend beyond national borders, such as the import or export of embryos and embryonic stem cells, organs, tissues and cells, the trans-border flow of tissue collections, DNA samples and genetic data, the conduct of biomedical research projects and experimentation simultaneously in several countries.”
The need for guidelines at an international level is widely recognized, but some doubt that a restrictive text such as a convention could be decreed at this stage in such a rapidly evolving domain.
** This report, as well as the one on Solidarity and International Co-operation between Developed and Developing Countries concerning the Human Genome, and the draft reports on the Follow-up of the International Symposium on "Ethics, Intellectual Property and Genomics and Collection, Treatment, Storage and Use of Genetic Data are available on the IBC website (*www.unesco.org/ibc/en/actes/index.htm). The report on Pre-implantation Genetic Diagnosis and Germ-line Intervention will soon be added. The proceedings from different sessions are also available.
*** Text available on the above-mentioned site