1. Universal Declaration on Bioethics and Human Rights

2. standard-setting actions Universal Declaration on Bioethics and Human Rights 1997 2003 2005

3. standard-setting actions October 2001: Roundtable Ministers of Science “examine the possibility of developing … a universal instrument on bioethics…” October 2001: 31 st General Conference invite the DG to submit the technical and legal studies undertaken regarding the possibility of elaborating universal norms on bioethics 2002 – 2003: IBC feasibility study Report on the Possibility of Elaborating a Universal Instrument on Bioethics (June 2003) October 2003: 32 nd General Conference

4. The Mandate “considers that it is opportune and desirable to set universal standards in the field of bioethics with due regard for human dignity and human rights and freedoms, in the spirit of cultural pluralism inherent in bioethics;” “invites the Director-General to continue preparatory work on a declaration on universal norms on bioethics, by holding consultations with Member States, the other international organizations concerned and relevant national bodies, and to submit a draft declaration to it at its 33rd session.” 32nd Session of the General Conference of UNESCO - 2003 32 C/Resolution 24 The General Conference,

5. Towards a declaration on universal norms on bioethics QUERIES AND QUESTIONS - what is universal: norms or declaration? - norms or principles? - domain of bioethics - focus on human beings (moral object vs subject) - which general principles? - specific issues: increasing controversy - which stakeholders: States, scientists, professionals etc healthcareenvironment Social issues

6. Procedure 1. Pre-drafting consultation on the scope and structure January 2004 – April 2004 2. Drafting process April 2004 – January 2005 3. Finalization January 2005 – September 2005 Three main phases:

7. Phase 1: Pre-drafting consultation December – April 2004: Determination of a timetable January – April 2004: Broad consultations on the scope and structure of the future declaration 1.Written consultation with Member States questionnaires sent to 190 Member States: 67 returned (from all regions) - aims and scope of the declaration - structure of the declaration - content of the declaration 2. Extraordinary Session of IBC (27-29 April 2004) 169th session Executive Board

8. Extraordinary Session of IBC (Paris, 27-29 April 2004) Intergovernmental Organizations Food and Agriculture Organization of the United Nations (FAO) World Intellectual Property Organization (WIPO) United Nations University (UNU) The Arab League Educational Cultural and Scientific Organization (ALECSO) Organization for Economic Cooperation and Development (OECD) Council of Europe European Commission Non Governmental Organizations World Medical Association (WMA) Human Genome Organization (HUGO) International Council for Science (ICSU) Disabled People’s International (DPI) International Association of Bioethics (IAB) National Bioethics Committees Japan New Zealand KoreaTunisiaEgyptFrancePortugal United States of America United Kingdom Republic of Côte d’Ivoire Republic of Congo Russian Federation CroatiaMexico Dominican Republic Around 200 participants from 70 countries

9. Phase 2: Drafting process April 2004 – January 2005 April 2004 – January 2005 1.6 Meetings of Drafting Group (members of IBC) 2. UN Inter-Agency Committee June and December 2004 3. National and regional consultations 4. 11th Ordinary session of IBC (hearing on religious and spiritual perspectives) August 2004 5. Written consultation on the Third Outline: 75 contributions received October – December 2004 6. Joint session IGBC and IBC: approval text IBC January 2005 Public drafts on website 1 st outline: June 2004 2 nd outline: July 2004 3 rd outline: August 2004 4 th outline: December 2004

10. Phase 3: Finalization * February 2005: Official communication of the preliminary draft * 4-6 April 2005: 1th meeting of a committee of governmental experts * 12-28 April 2005: 171 st session of Executive Board * May – June 2005: Informal consultations * 20-24 June 2005: 2 nd meeting of a committee of governmental experts * 12-30 September 2005: 172 nd session EXB * 19 October 2005: Adoption by 33 rd session of General Conference

11. Universal Declaration on Bioethics and Human RightsPreambule General provisions aimsscopePrinciples Application of the principles Promotion of the declaration Final provisions 1.Human dignity and human rights 2.Benefit and harm 3.Autonomy and individual responsibility 4.Consent 5.Persons without the capacity to consent 6.Respect for human vulnerability and personal integrity 7.Privacy and confidentiality 8.Equality, justice and equity 9.Non-discrimination and non- stigmatization 10.Respect for cultural diversity and pluralism 11.Solidarity and cooperation 12.Social responsibility and health 13.Sharing of benefits 14.Protecting future generations 15.Protection of the environment, the biosphere and biodiversity

12. Universal Declaration on Bioethics and Human Rights Application of the principles Art. 18: Decision-making and addressing bioethical issues - transparency in decision-making - dialogue and informed public debate Art. 19: Ethics committees Promotion of the Declaration Art. 22: Role of States - take all appropriate measures - encourage establishment of ethics committees Art. 23: Bioethics education, training and information Art. 24: Internation cooperation Art. 25: Follow-up-action by UNESCO

13. Universal Declaration on Bioethics and Human Rights PROMOTION AND DISSEMINATION Promotion materials: brochures, folders, website Promotion materials: brochures, folders, website Translations Translations Publications: journals, media, newspapers Publications: journals, media, newspapers Book with explanation per article Book with explanation per article Book with background materials Book with background materials Conferences, meetings etc. Conferences, meetings etc.

14. Universal Declaration on Bioethics and Human Rights CAPACITY-BUILDING: making it work 1.Global Ethics Observatory 2. Ethics Education Programme 3. Assisting Bioethics Committees

15. Universal Declaration on Bioethics and Human Rights ELABORATION: explain in more detail 2006-7: IBC working group on Consent (Articles 6 and 7) 2006-7: IBC working group on Consent (Articles 6 and 7) 2006-9: IBC working group on Social Responsibility and Health (Article 14) 2006-9: IBC working group on Social Responsibility and Health (Article 14) 2008: IBC working group on Human Vulnerability and Personal Integrity (Article 8) 2008: IBC working group on Human Vulnerability and Personal Integrity (Article 8)

16. ETHICS OF SCIENCE AND TECHNOLOGY Website: www.unesco.org/shs/ethics