Establishing and reinforcing bioethics infrastructure – the challenge of national bioethics committees

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? BIOETHICS substance contents Reflection, analysis Scientific and public debate, exchange of views • Activities: • - Research • Teaching • Policy-advice Specific topics

3. What is bioethics infrastructure? BIOETHICS 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. Assistance in reinforcing the ethics infrastructure • UNESCO: three practical projects: • Global Ethics Observatory (GEObs) • Ethics Education Program (EEP) • Assisting Bioethics Committees (ABC)

5. Assistance in reinforcing the ethics infrastructure What are the aims? 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. 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 1114 1241 institutions 225 373 programmes 192 201 22 countries; 461 instruments 151 codes resources 139 210 Freely accessible 6 languages: Arabic, Chinese, English, French, Russian, Spanish www.unesco.org/shs/ethics/geobs

7. GEObs

8. GEObs

9. GEObs

10. GEObs

11. 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. 1 May 2009: 201 programs Database 3: Ethics Teaching Programmes

13. 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 • 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 • 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 • 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 39 • Universal Declaration on Bioethics and Human Rights 33

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. 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. 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. 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. 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