UNESCO and Bioethics. Copenhagen, 7 November Henk ten Have, MD PhD, United Nations Educational, Scientific and Cultural Organization

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1 UNESCO and Bioethics Henk ten Have, MD PhD, Director, Division of Ethics of Science and Technology Copenhagen, 7 November 2006 United Nations Educational, Scientific and Cultural Organization Established Nov.1945 Hdq. Paris, France

7 November 2006 United Nations Educational, Scientific

2 Why ethics in an intergovernmental setting?

4 ETHICS AND UNESCO 1970 UNESCO first reflection on ethics of life sciences 1993 Start bioethics program with International Bioethics Committee (IBC) - 36 independent experts designated by DG 1998 Intergovernmental Bioethics Committee (IGBC) - 36 member states of UNESCO elected by GC 1998 Expansion of program with ethics of scientific knowledge and technology -World Commission on the Ethics of Scientific Knowledge and Technology (COMEST) 2002 Inter-agency Committee on Bioethics

Committee (IGBC) - 36 member states of UNESCO elected by GC 1998 Expansion of program with ethics of scientific

5 UNESCO Ethics of Science and Technology Mediate between scientific expertise and policy-making (research-policy linking) bioethics science ethics environmental ethics space ethics nanotechnology ethics Standard-setting actions Capacity building Awareness raising Political decision making regarding ethical issues in the Member States

ethics space ethics nanotechnology ethics Standard-setting actions Capacity

6 UNESCO Ethics of Science and Technology Mediate between scientific expertise and policy-making (research-policy linking) bioethics science ethics environmental ethics space ethics nanotechnology ethics IBC COMEST Standard-setting actions Capacity building Awareness raising IGBC Inter-agency Com Political decision making regarding ethical issues in the Member States

ethics nanotechnology ethics IBC COMEST Standard-setting actions Capacity building

7 UNESCO Ethics of Science and Technology science politics Cultural diversity Geographical representation Languages Objectivity Impartiality Scientific rationality What is bioethics? Which fundamental principles? Feasibility Political reasonableness Compromise and negotiation

Impartiality Scientific rationality What is bioethics?

8 Challenges 1. Ethics infrastructure a. Ethics committees b. Ethics teaching c. Ethical expertise d. Ethics research e. (Inter)national cooperation

9 Challenges 2. Legal and regulatory framework - Universalism vs cultural diversity - Ethics vs religion - Risk of different standards - Inadequate government action - no interaction between ethics experts and policy makers

10 Challenges 3. Western/northern bias of bioethics - Focus on advanced technologies - Emphasis on individual decision-making - Focus on diseases of the rich - Commercialisation and commodification of health care and science

11 What can be done in an intergovernmental setting? exploring shared values and principles and setting global standards enhancing and building capacities in Member States to deal with ethical issues increasing public awareness and promoting public debate

standards enhancing and building capacities in Member States

12 1997 area of bioethics standard-setting actions

13 Universal Declaration on Bioethics and Human Rights Unanimously adopted by 191 Member States, October basic principles 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

Respect for human vulnerability and personal integrity 7. Privacy and confidentiality 8. Equality, justice and equity 9. Non-discrimination and non- stigmatization 10.

14 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 up-action by UNESCO

Art. 19: Ethics committees Promotion of the Declaration Art.

15 A new agenda for bioethics Universal Declaration on Bioethics and Human Rights Article 14: Social responsibility and health progress in science and technology should advance: 1. Access to quality health care and essential medicines 2. Access to adequate nutrition and water 3. Improvement of living conditions and the environment 4. Elimination of the marginalization and the exclusion of persons on the basis of any grounds, and 5. Reduction of poverty and illiteracy.

Access to adequate nutrition and water 3. Improvement of living conditions and the environment 4.

16 area of ethics of science and technology exploring, discussing, analysing shared values and fundamental principles environmental ethics science ethics technology ethics - Precautionary Principle - Course development - Informative book Codes of conduct for scientists - Space ethics - Nanotechnology ethics standard-setting actions

ethics - Precautionary Principle - Course development - Informative book Codes of

17 Application of ethical principles in practices Ethics infrastructure UNESCO Global Ethics Observatory (GEObs) Ethics Education Program (EEP) Assisting Bioethics Committees (ABC) capacity building

18 GEObs Global Ethics Observatory Database 1: experts (Who is who in ethics?) Database 2: institutions, organisations, commissions Database 3: ethics teaching programmes Database 4: ethics related legislation and guidelines Worldwide coverage Freely accessible 6 languages: Arabic, Chinese, English, French, Russian, Spanish Launch: 15 December capacity building

Database 4: ethics related legislation and guidelines Worldwide coverage Freely accessible 6

19 Observatory Home Page 2 1

20 1 October 2006: 108 programs Database 3: Ethics Teaching Programmes

21 Database 3: Ethics Teaching Programmes Search Results Page

22 EEP Ethics Education Programme mapping of experts in ethics teaching sampling of teaching programs (150 programs) pilot teacher training course (Nov.2006: Bucharest) educational resources (manuals) advisory ethics committee - Draft proposal for core curriculum in bioethics - Development of supporting multimedia resources capacity building

23 Ethics Education Programme Mapping of experts Description of programs Core curriculum proposals Educational resources Ethics teachers training courses Network or schools Documentation centers UNESCO chairs more and better ethics teaching programs

24 ABC Assisting Bioethics Committees 1. identification and data collection about existing committees 2. provision of practical information 3. technical support 4. educational support Task force of experts - logistical support and expertise - long-term affiliation - GEObs Database 2 - questionnaire Series of Guidebooks 1. Establishing Bioethics Committees 2. Bioethics Committees at work 3. Educating Bioethics Committees 2007: Malawi, Madagascar, Ghana capacity building

25 Rotating Conferences - disseminating information - networking with national experts Netherlands, 18 March 2004 Iran, 2 May 2004 Lithuania, 13 September 2004 Turkey, 15 September 2004 Argentina, 4-5 November 2004 South Korea, 16 November 2004 Mexico, 24 November 2004 Indonesia, 2 December 2005 Portugal, 6 January 2005 Russia, 21 January 2005 Publications China, 31 Oct 2 November 2005 Estonia, 25 November 2005 Philippines, 9-10 December 2005 New Zealand, February 2006 Peru, April 2006 awareness raising

26 Publications - Information kit on Human Cloning - Brochure on Nanotechnology and Ethics - Book series in Ethics -Vol.1: Environmental Ethics (2006) -Vol.2: Ethics and Nanotechnology (2007) - Guidebooks on National (Bio)ethics Committees: - Guidebook 1: Establishing Bioethics Committees (April 2005) - Guidebook 2: Bioethics Committees at Work (October 2005) - Guidebook 3: Educating Bioethics Committees (December 2006) awareness raising

27 A summary view of ethics activities in a coherent framework Standards Capacity Awareness OUTCOMES platforms for ethical action Declarations Ethics committees Legislation/ guidelines publications GEO databases intensive public debate informed public opinion (inter)national normative frameworks Ethics teaching Rotating conferences morally sensitized professionals and scientists assisted policymaking

28 ETHICS OF SCIENCE AND TECHNOLOGY Our website:

The Universal Declaration on Bioethics and Human Rights and the UNESCO work in building capacity for ethical review

International Round Table Biomedical Research in Developing Countries: the Promotion of Ethics, Human Rights and Justice 15-16 December 2008 The Universal Declaration on Bioethics and Human Rights and