Scottish Council on Human Bioethics

15 Morningside Road, Edinburgh EH10 4DP, Tel: 0131 447 6394 or 0774 298 4459

Conference Report

Towards a declaration on universal norms on bioethics
(Extraordinary Session of the International Bioethics Committee)

27-29 April 2004

Organisers: United Nations Education, Scientific and Cultural Organization (UNESCO)

Venue: UNESCO House – Paris Room II (Fontenoy)

SCHB participant: Dr. Calum MacKellar

Programme

Opening Session

Opening ceremony with Mr Koïchiro Matsuura Director-General of UNESCO
Mrs Michèle S. Jean Chairperson of the International Bioethics Committee (IBC)

Towards a Declaration on Universal Norms on Bioethics - Presentation by the Secretary-General of IBC

Consultation with Member States on the Scope and Structure of the Future Declaration on Universal Norms on Bioethics: Preliminary Results - Presentation by the Chairperson of IBC

Hearings of Intergovernmental Organizations

Chaired by Judge (Mr) Patrick Robinson, Vice-Chairperson of IBC

Office of the High Commissioner for Human Rights - Mr Dzidek Kedzia, Chief, Research and Right to Development Branch

Food and Agriculture Organization of the United Nations (FAO) - Mr Clive Stannard, Senior Liaison Officer, Secretariat of the Commission on Genetic Resources for Food and Agriculture

World Intellectual Property Organization (WIPO) - Mr Richard Kjeldgaard, Senior Counsellor, Genetic Resources, Biotechnology and Associated Traditional Knowledge Section Traditional Knowledge Division

Organization for Economic Cooperation and Development (OECD) - Mrs Elettra Ronchi, Administrator, Human Health-related Biotechnologies

Council of Europe - Mr Carlos De Sola, Head of Bioethics Division, Directorate General of Legal Affairs

European Commission - Mr Davis Coles, Unit Ethics and Science, Research Directorate General

United Nations University (UNU) - Mr Darryl Macer, Affiliated Professor of Bioethics at the Institute of Advanced Studies

The Arab League Educational Cultural and Scientific Organization (ALECSO) - Mrs Saida Charfeddine, Consultant to the ALECSO Office at UNESCO

Hearings of National Bioethics Committees

Chaired by Mrs Michèle S. Jean, Chairperson of IBC

Bioethics Committee, Council for Science and Technology of Japan - Mr Ryuichi Ida, Professor at the Faculty of Law of the University of Kyoto

Ethics Committee, Health Research Council of New Zealand - Mrs Sylvia Rumball, Assistant to the Vice-Chancellor (Equity and Ethics), Massey University

Korean Bioethics Association - Mr Young-Mo Koo, Faculty of Medicine of the University of Ulsan (Seoul)

National Medical Ethics Committee of Tunisia - Mr Abdelaziz Ghachem, President of the Technical Section

National Bioethics Committee of Egypt - Mr Ibrahim Gamil Badran, President

National Consultative Ethics Committee of France (CCNE) - Mrs Marie-Hélène Mouneyrat, Secretary-General

National Council of Ethics for the Life Sciences of Portugal - Mrs Paula Martinho da Silva, President

The President's Council on Bioethics (United States of America) - Mr O. Carter Snead, General Counsel

The Nuffield Council on Bioethics (United Kingdom) - Mr Harald Schmidt, Deputy Director

National Bioethics Advisory Committee of the Cote D'Ivoire - Mr Lazare Marcelin Poame, President

National Bioethics Committee of the Democratic Republic of Congo - Mr Evariste Likinda Bofonda, President

National Bioethics Committee of the Academy of Sciences of the Russian Federation - Mr Boris Yudin, Vice-President

National Bioethics Committee for Medicine of Croatia - Mr Bozidar Vrhovac, Co-Chairman

National Bioethics Commission of Mexico - Mr Juan Garza Ramos, Executive Secretary

National Bioethics Commission of the Dominican Republic - Mr Andres Peralta-Cornielle, First Vice-President

Hearings of International Non-Governmental Organizations

Chaired by Prof. (Mrs) Nouzha Guessous Idrissi, Vice-Chairperson of IBC

World Association of Children's Friends (AMADE) - Mr Jean Michaud, Administrator, Honorary Adviser to the Cour de Cassation

World Medical Association (WMA) - Mr John R. Williams, Director of Ethics

Human Genome Organization (HUGO) - Mrs Bartha Maria Knoppers, President, Ethics Committee

International Federation for Human Rights (IFHR) - Mrs Monique Hérold, Chargée de mission

Development Alternatives of Women in a New Era (DAWN) - Mrs Lilian Abracinskas, Collaborator in Latin America for Sexual and Reproductive Rights

International Council for Science (ICSU) - Mr Carthage Smith, Deputy Executive Director

Disabled Peoples' International (DPI) - Mr Giampiero Griffo, Member of the World Council of DPI and Chair of the European region

International Associations of Bioethics (IAB) - Mrs Florencia Luna, President

Topics Discussed

Nature of the Declaration:

• Whether ‘universal declaration on norms’ or ‘declaration on universal norms’.
• Whether bio-ethics or bio-law.
• Addressees of Declaration; signatories.
• Whether aspirational or pragmatic.
• Whether Declaration will be binding and if so, to what extent.
• Absolute vs relative principles.
• Whether general principles or specific principles.
• Relationship of Declaration to other instruments.

Intellectual approach:

• Definition of terms.
• Going back to basics.
• Human rights; non-human rights.
• Meaning of ‘human dignity’.
• Whether consensus needed or even possible.
• Technical vs ethical issues.
• Whether “standards” or “rights”.
• Whether principles should be ranked.
• Public vs private morality.

Content (whether or not to include):

• Controversial issues.
• Non-humans.
• Benefit sharing; patents.
• Stem cells.
• Abortion.
• Cloning.
• Articulation of reasons; preamble; explanatory memorandum.

Concerns to be taken into account:

• Cultural differences:
  - East vs West;
  - Europe vs Asia;
  - ethical imperialism;
  - ‘cultural differences’ used as an alibi.
• Globalisation.
• Rich-poor divide.
• Safeguards; exploitation and protection of the vulnerable; instrumentalisation of human beings.
• Protection and concerns of disabled people.
• Influence of religion and engagement of religious organisations.

Practical matters:

• Legitimacy and credibility of process:
  - Short notice of consultation and Extraordinary Session; measures to rectify.
  - Whether timetable realistic.
• Whether to include external experts to aid drafting; role of non-experts.
• Implementation:
  - Margin of appreciation.
  - Likelihood of states and organisations to comply.
  - Multinational companies.
• Monitoring; investigation of breaches.
• Training; backup; publicity.
• Co-ordination with other groups; networking of bioethics committees; independence of bioethics committees from governments.
• Future implications.
  - Implications on research; responsibility on researchers.
  - Future of Declaration; obsoleteness.
• Hope for future collaboration of opposing ideologies on certain issues.

Preliminary conclusions of the Extraordinary Session

Mrs Jean (Chair of IBC):

Next stages:

• The title, “universal standards” may change.
• The process is as important as the product.
• We have taken note of all your comments.

Purpose:

• We will consider all the different views.

Structure:

• There will be a preamble.

Sections:

• IBC will still want to address some areas [research etc.] even though they are addressed elsewhere.
• There is a need for raising awareness or the Declaration will not be worth the paper it will be written on.
• On the same lines as prepared for the Genome Declaration.

Contents:

• Principles:
  - Those currently in other texts + new ones.
  - Ranking is rejected.
• Subject areas:
  - No major rejection of topics mentioned in the Questionnaire.
  - But IBC will need to find a way to manage the subject areas.
• Controversial issues:
  - As Judge Robinson points out, we will need to find a way of dealing with these in a meaningful way.
• Benefit sharing:
  - Controversial.