International Bioethics Committee; 8Th; Proceedings; 2001
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PROCEEDINGS INTERNATIONAL BIOETHICS COMMITTEE OF UNESCO (IBC) Eighth Session Volume I Division of the Ethics of Science and Technology of UNESCO II Table of Contents Introduction ..............................................................................................1 CHAPTER 1 Report of the Eighth Session of the International Bioethics Committee of UNESCO (IBC) (by Mrs Yolande Tano Bouah, Rapporteur of the IBC)...............................3 CHAPTER 2 Human Genetic Data: Preliminary Study by the IBC on its Collection, Processing, Storage and Use (Rapporteurs: Mrs Sylvia Rumball and Mr Alexander McCall Smith) .......21 CHAPTER 3 Report of the IBC on Ethics, Intellectual Property and Genomics (Rapporteur: Justice Michael Kirby) .........................................................51 CHAPTER 4 Advice of the IBC on the Patentability of the Human Genome (14 September 2001) ...............................................................................65 CHAPTER 5 Speeches at the Eighth Session of the IBC I. Mr Koïchiro Matsuura, Director-General of UNESCO (opening speech).....................................................................69 II. Mr Ryuichi Ida, Chairperson of the IBC (opening speech).....................................................................77 III. Mrs Anne Fagot-Largeault, Professor at the Collège de France (opening speech).....................................................................85 IV. Mr Ryuichi Ida, Chairperson of the IBC (closing speech) ......................................................................91 III CHAPTER 6 Composition of the International Bioethics Committee of UNESCO (IBC) in 2001 .......................................................................95 CHAPTER 7 List of Participants ...............................................................................101 IV INTRODUCTION The Eighth Session of the International Bioethics Committee (IBC) was held at UNESCO Headquarters in Paris, from 12 to 14 September 2001. The Director-General of UNESCO, Mr Koïchiro Matsuura, honoured with his presence the opening ceremony in which Professor Anne Fagot-Largeault, Chair of Philosophy of Biological and Medical Sciences at the Collège de France also took part. Around 350 participants from more than 70 countries throughout the world were present. In accordance with the Agenda of this session, the IBC examined two draft reports drawn up by its working groups: the first on ethics, intellectual property and genomics and the second on the collection, treatment, storage and use of genetic data. These reports have since been finalized on the basis of comments and suggestions made by members of the IBC and other participants at the eighth session. A Round Table on ‘Education in Bioethics and Youth’ brought together several representatives of young people. The topics chosen by the participants in the Round Table and the diversity of their approaches illustrated the differences of experiences and projects in progress in the field of education in bioethics in different countries. During this session, and directly in line with the initiative taken by the Director-General of UNESCO to propose for the 2002-2003 biennium the elaboration of an international instrument on genetic data, the IBC proceeded with a hearing of three personal data protection commissioners. Furthermore, a state of the art on the ethical aspects of proteomics illustrated the place occupied by this new branch of research in the post-genomic era and the ethical issues that it can raise. Volume I of these Proceedings includes the report of the session, the speeches delivered and the list of participants. It also includes the Composition of the IBC, the IBC Report on ethics, intellectual property and genomics and the preliminary study of the IBC on the collection, processing, storage and use of human genetic data. Volume II includes the presentations of participants in the Round Table and the hearing of Commissioners for the protection of personal data, together with the presentation on proteomics. UNESCO August 2002 2 Chapter 1 REPORT OF THE EIGHTH SESSION OF THE INTERNATIONAL BIOETHICS COMMITTEE OF UNESCO (IBC) by Yolande Tano Bouah, Rapporteur of the IBC I. Introduction 1. The Eighth Session of the International Bioethics Committee (IBC) was held at UNESCO Headquarters in Paris from 12 to 14 September 2001. It was attended by around three hundred and fifty participants from seventy different countries. 2. In accordance with the Agenda of this session (see Annex), the IBC considered two draft reports drawn up by its working groups: the first on ethics, intellectual property and genomics and the second on the collection, treatment, storage and use of genetic data. One session was devoted to a round table on ‘Education in Bioethics and Youth’ and a state-of-the-art on ethical aspects of proteomics was presented. Finally, Commissioners for the Protection of Personal Data were heard. 3. Meetings reserved for members of the IBC were held prior to the opening of the Eighth Session and immediately following its closure. These meetings provided the IBC with an opportunity to examine and adopt amendments to its Rules of procedure proposed by an ad hoc group set up for this purpose; to take stock of follow-up action on the recommendations made at the Seventh Session of the IBC; to adopt a work programme following the presentation of the implementation of activities carried out, particularly within the framework of the follow-up of the Universal Declaration on the Human Genome and Human Rights and, last but not least, to deliver an Advice on the patentability of the human genome (see Section IX of this Report). 3 II. Opening of the Eighth Session of the IBC 4. In his opening address, the Director-General of UNESCO, Mr Koïchiro Matsuura, expressed his consternation at the attacks perpetrated in New York and Washington on 11 September 2001. He condemned terrorism and pointed out that ethical reflection was more than ever necessary to promote world peace. He called attention to the pioneering role of the IBC in this area and recalled the preponderant role that bioethics would play in the post-genomic era. The patentability of the human genome, research applications and protection of genetic data are all topical questions to which solutions must be found at international level. In particular, he laid emphasis on the need to draw up an international instrument on genetic data. He described his initiative to create an inter-agency committee responsible for ensuring better coordination of the activities carried out by the various organizations of the United Nations system in the field of bioethics. He also referred to the Round Table of Ministers of Science on bioethics organised by UNESCO on 22 and 23 October 2001, which would be a highlight of the 31st session of the General Conference. Finally, he felt that the time had come for UNESCO to examine in detail the feasibility of preparing a universal instrument to cover all bioethical issues. 5. Mr Ryuichi Ida, Chairperson of the IBC, in turn stressed the fundamental importance of bioethics in the contemporary world. He reminded the meeting that vigilance was more necessary than ever, particularly in regard to human reproductive cloning. He summarized the fruitful work of the Seventh Session of the IBC (Quito, Ecuador, 7-9 November 2000) and of the Second Session of the Intergovernmental Bioethics Committee (IGBC) (Paris, 14-16 May 2001). He welcomed the Director-General’s proposal to create an inter-agency committee, as coordination of efforts in the bioethics area is essential to respond to the new problems raised by the exceptionally rapid progress of biomedical science. 6. In her address, Professor Anne Fagot-Largeault, Chair of Philosophy of Biological and Medical Sciences at the Collège de France, laid emphasis on the need for ethical reflection and action at international level. Although the pitfalls are real, pessimism is not in order. The diversity of cultural traditions might, from time to time, seem to pose an obstacle, but it is this very richness that embodies the possibility of defining common values and principles, as can be seen from the successful action of the IBC and the adoption of the Universal Declaration on the Human Genome and Human Rights in 1997. Patience, modesty and courage are the key words to ensure implementation of the principles set forth in the Declaration. 4 7. The addresses delivered during this opening ceremony are included in these Proceedings. III. Round Table on ‘Education in Bioethics and youth’ 8. The Round Table on ‘Education in Bioethics and Youth’ chaired by Mrs Yolande Tano (Côte d’Ivoire), Vice-President of the University of Abobo-Adjamé, brought together several representatives of young people. Mrs Tano pointed out that this Round Table reflected a desire to enable young people, who tomorrow will be the relay for responsibility of bioethical action, to have their say: this in conformity with Article 20 of the Universal Declaration on the Human Genome and Human Rights, which stresses the vital need for education in bioethics. 9. The presentation by Miss Catalina Alvarez Irarragori (Cuba), Centre of Genetic Engineering and Biotechnology, underlined the risks of abuse linked to the biotechnological revolution. In particular, commercial interests must not be allowed to govern the progress of medicine. Scientists, university teachers, students, politicians and civil society should reflect collectively on the means of creating a framework