1. Summerschool Health law and ethics
Erasmus University Rotterdam, July 2009
Establishing and reinforcing bioethics infrastructure – the challenge of national bioethics committees
Henk ten Have, Director
Division of Ethics of Science and Technology, UNESCO, Paris

2. What is bioethics infrastructure?
substance contents
Reflection, analysis
Scientific and public debate, exchange of views
Activities:
- Research
Teaching
Policy-advice
Specific topics

3. What is bioethics infrastructure?
Reflection, analysis
Activities:
- Research
Teaching
Policy-advice
substance contents
Scientific and public debate, exchange of views
Specific topics
preconditions setting
Immaterial conditions: time, opportunity; recognition, independency
Teaching programs
Research facilities
Public media
Bioethics committees
National and international support
Material conditions: resources, networks, platforms

4. UNESCO: three practical projects: Global Ethics Observatory (GEObs)
Assistance in reinforcing the ethics infrastructure
UNESCO: three practical projects:
Global Ethics Observatory (GEObs)
Ethics Education Program (EEP)
Assisting Bioethics Committees (ABC)

5. What are the aims? Assistance in reinforcing the ethics infrastructure
Global Ethics Observatory (GEObs)
Factual assessment: what exists and how does it work?
Ethics Education Program (EEP)
Knowledge transfer: how to create a new generations of scientists and health professionals who care about ethics?
Assisting Bioethics Committees (ABC)
Policy impact: how to create an independent platform for public debate and policy advice in bioethics?

6. 22 countries; 461 instruments
GEObs
Global Ethics Observatory
Database 1: experts (Who is who in ethics?)
Database 2: institutions, organisations, commissions
Database 3: ethics teaching programmes
Database 4: legislation
Database 5: codes of conduct
Database 6: resources in ethics
experts
institutions
programmes
22 countries; 461 instruments
151 codes
resources
Freely accessible
6 languages: Arabic, Chinese, English, French, Russian, Spanish

7. GEObs

8. GEObs

9. GEObs

10. GEObs

11. Ethics Education Programme
EEP
Ethics Education Programme
Activities undertaken
mapping of experts in ethics
sampling of teaching programs
bioethics core curriculum
ethics teacher training course
ethics resources
Regional expert meetings:
Budapest (2004)
Moscow (2005)
Split (2005)
Tehran (2006)
Muscat (2006)
Istanbul (2007)
Marrakech (2008)
Abidjan (2008)
Dakar (March 2009)
Kinshasa (July 2009)

12. Database 3: Ethics Teaching Programmes
1 May 2009:
201 programs
Database 3: Ethics Teaching Programmes
This slide shows the Database 3 Search Page, which also has the same functions as the earlier two databases.

13. Areas of ethics of science and technology
Ethics teaching programmes (201)
animal ethics 2
bioethics 51
dental ethics 6
engineering ethics 3
environmental ethics 7
ethics and law 10
ethics and social sciences 5
medical ethics 78
nursing ethics 8
pharmacy ethics 2
philosophical ethics 22
science ethics 6
other 1
Areas of ethics of science and technology

14. Ethics teaching programmes (201)
37 countries
Georgia 2
Greece 9
Guinea 1
Hungary 22
Jordan 1
Latvia 2
Lebanon 3
Lithuania 13
Macedonia 2
Malta 2
Moldova 1
Morocco 2
Pakistan 2
Poland 10
Qatar 1
Romania 5
Russian Fed. 8
Saudi Arabia 5
Senegal 1
Serbia 2
Slovakia 5
Syria 3
Togo 1
Tunisia 9
Turkey 41
Ukraine 3
Albania 1
Algeria 2
Belarus 12
Benin 1
Bulgaria 13
Burkina Faso 1
Côte d'Ivoire 1
Croatia 4
Cyprus 1
Czech Republic 8
Egypt 1

15. Ethics teaching programmes (201)
UNESCO documents used in programs
Universal Declaration on the Human Genome and Human Rights 74
International Declaration on Human Genetic Data
Universal Declaration on Bioethics and Human Rights

16. UNESCO proposal for minimum bioethics course
BIOETHICS CORE CURRICULUM
CURRICULUM PRINCIPAL EN BIOETHIQUE
CURRÍCULUM BÁSICO DE ESTUDIOS SOBRE BIOÉTICA
ОСНОВНОЙ УЧЕБНЫЙ ПЛАН ПО БИОЭТИКЕ
生命伦理学主要教程
المنهج الأساسي لتعليم أخلاقيات البيولوجيا
Section 2 (document in progress
- Educational resources
Section 1
Objectives
Contents
Teacher manual

17. UNESCO Bioethics Core Curriculum

18. UNESCO Bioethics Core Curriculum
- based on principles of Universal Declaration on Bioethics and Human Rights
proposes a minimum program
flexibility: does not impose a particular model
global outreach: useful in all regions
heterogeneity: variety and diversity around a common core
aim: to facilitate the introduction of bioethics primarily in medical and science schools

19. UNESCO Bioethics Core Curriculum
Implementation
materials available on website (english; arabic, french, russion and spanish)
development of educational resources
* multimedia
* case books (UNESCO Chairs)
3. test phase: introduction in interested universities in different regions with uniform assessment and possible revision

20. UNESCO Bioethics Core Curriculum
Potential Test Sites (interested universities):
Africa:
Masinde Muliro University of Science and Technology (Kenya)
Arab States:
Université Hassan II, Casablanca (Morocco)
University of Damascus (Syria)
Asia and the Pacific:
Kumamoto University (Japan)
University of the Philippines (Philippines)
Europe and North America:
Hebrew University/Haddassah, Jerusalem (Israel)
University of Haifa (Israel)
Lomonosov Moscow State University (Russia)
Latin America and the Carribean:
Universidad del Litoral (Argentina)
Sao Paolo State University (Brazil)
Universidad de la Republica (Uruguay)

21. Ethics Education Programme
EEP
Ethics Education Programme
Ethics teacher training course
Objectives:
Learning how to teach ethics
Empowering a new generations of ethics teachers
Courses
2006 – 2007: Romania, Kenya, Slovak Republic and Kingdom of Saudi Arabia
17-21 November 2008: Minsk, Belarus
24-28 August 2009: Windhoek, Namibia

22. Ethics committees
Universal Declaration on Bioethics and Human Rights (2005)
Application of the principles
Article 19 Ethics committees
Independent, multidisciplinary and pluralist ethics committees should be established, promoted and supported at the appropriate level in order to:
Assess the relevant ethical, legal, scientific and social issues related to research projects involving human beings;
Provide advice on ethical problems in clinical settings;
Assess scientific and technological developments, formulate recommendations and contribute to the preparation of guidelines on issues within the scope of this Declaration;
Foster debate, education and public awareness of, and engagement in, bioethics.

23. Ethics committees
Universal Declaration on Bioethics and Human Rights (2005)
Promotion of the Declaration
Article 22 Role of States
2. States should encourage the establishment of independent, multidisciplinary and pluralist ethics committees, as set out in Article 19

24. Ethics committees Bioethics committees: different levels local
regional
national
international
global
Bioethics Commission of Hospital del Niño, Panama
Scottish Council on Human Bioethics
Nuffield Council on Bioethics
Council of Europe, Steering Committee on Bioethics (CDBI)
International Bioethics Committee (IBC)

25. National Bioethics Committees
Recent global phenomenon
1983: France
1987: Denmark
1991: Tunisia
1992: Mexico
1995: USA
2000: Singapore
2001: Germany
2007: Spain, Guinea, Jamaica
2009: Ghana

26. What is a National Bioethics Committee?
No official definition in UNESCO; great heterogeneity
Different names
France: Comité Consultatif National d’Ethique pour les sciences de la vie et de la sante
Australia: Australian Health Ethics Committee
Denmark: Danish Council of Ethics (Det Etiske Rad)
USA: President’s Council on Bioethics
Finland: National Advisory Board on Health Care Ethics
Subtile differences between
Committee or commission (official role)
Council (deliberation and consultation)
Advisory Board (recommendation)

27. What is a National Bioethics Committee?
Different models and approaches in existence
- Committees connected to government
Separate legal entity: e.g. France, Brazil
President: e.g. U.S.A.
Ministry: e.g. Gabon
Entity within Ministry (UNESCO Commission): e.g. Guinea
Parliament: e.g. Switzerland
- Committees connected to non-governmental organizations
Academy of Sciences: e.g. Madagascar, Tajikistan
National Science Foundation: e.g. Sri Lanka
Medical Association: e.g. Azerbaijan
Charity: e.g U.K.

28. What is a National Bioethics Committee?
Different tasks and roles
Four forms of bioethics committees
Policy-making and/or Advisory Committee
Health-Professional Association Committees
Health care/Hospital ethics Committees
Research ethics Committees
Goals:
Develop and advocate policies
Sound professional practices for patient care
Improve patient-centre care
Protect human research participants

29. What is a National Bioethics Committee?
Central characteristics
1. independency
2. multidisciplinarity
3. pluralism

30. What is a National Bioethics Committee?
Characteristics of ‘bioethics committee’
A committee that systematically and continually addresses the ethical dimensions of (a) medicine and the health sciences, (b) the life sciences, and (c) associated technologies
A group (a chairperson and members) that are meeting regularly
Focus on issues that are not simply factual but normative
It is not a research ethics committee; wider and different scope

31. What is a National Bioethics Committee?
‘National’ level
Committees that operate at the level of Member States as a whole
* impact on policy-making
* credibility
Recognized as ‘national’ by the Member State
for example: Nuffield Council on Bioethics

32. Assisting Bioethics Committees
ABC
Assisting Bioethics Committees
identification and data collection about existing committees
provision of practical information
technical support
GEObs database 2
Series of Guidebooks
Establishing Bioethics Committees
Bioethics Committees at work
Educating Bioethics Committees

33. Assisting Bioethics Committees
ABC
Assisting Bioethics Committees
technical support
Assistance in establishing committees, if authorities are interested
Teams of experts from countries with experienced committees; practical recommendations how to proceed
Botswana,
Cape Verte,
Chad,
Colombia,
El Salvador,
Malaysia,
Malawi,
Mauritius,
Nigeria,

34. Assisting Bioethics Committees
ABC
Assisting Bioethics Committees
technical support
Training of established committees
Togo: January 2009
Ghana: January 2009
Jamaica: March 2009
Guinea: April 2009
Gabon: June 2009
Madagascar: ? (February 2009)
Memorandum of Understanding
3 years project of assistance
Year 1: - training working methods
documentation
training secretariat
Year 2: - training ethics
- partnerships
- public event
Year 3: - training ethics
- networking