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

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

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

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Assistance in reinforcing the ethics infrastructure UNESCO: three practical projects: 1.Global Ethics Observatory (GEObs) 2.Ethics Education Program (EEP) 3.Assisting Bioethics Committees (ABC)

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

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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 GEObs Freely accessible 6 languages: Arabic, Chinese, English, French, Russian, Spanish www.unesco.org/shs/ethics/geobs experts 1114 1241 institutions 225 373 22 countries; 461 instruments 151 codes resources 139 210 programmes 192 201

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GEObs

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Ethics Education Programme Activities undertaken 1.mapping of experts in ethics 2.sampling of teaching programs 3.bioethics core curriculum 4.ethics teacher training course 5.ethics resources EEP 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)

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

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Ethics teaching programmes (201) animal ethics 2 bioethics51 dental ethics 6 engineering ethics 3 environmental ethics 7 ethics and law10 ethics and social sciences 5 medical ethics78 nursing ethics 8 pharmacy ethics 2 philosophical ethics22 science ethics 6 other 1 Areas of ethics of science and technology

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Ethics teaching programmes (201) Albania 1 Algeria 2 Belarus12 Benin 1 Bulgaria13 Burkina Faso 1 Cte d'Ivoire 1 Croatia 4 Cyprus 1 Czech Republic 8 Egypt 1 37 countries Poland10 Qatar 1 Romania 5 Russian Fed. 8 Saudi Arabia 5 Senegal 1 Serbia 2 Slovakia 5 Syria 3 Togo 1 Tunisia 9 Turkey41 Ukraine 3 Georgia 2 Greece 9 Guinea 1 Hungary22 Jordan 1 Latvia 2 Lebanon 3 Lithuania13 Macedonia 2 Malta 2 Moldova 1 Morocco 2 Pakistan 2

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Ethics teaching programmes (201) UNESCO documents used in programs Universal Declaration on the Human Genome and Human Rights74 International Declaration on Human Genetic Data39 Universal Declaration on Bioethics and Human Rights33

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BIOETHICS CORE CURRICULUM CURRICULUM PRINCIPAL EN BIOETHIQUE CURRCULUM BSICO DE ESTUDIOS SOBRE BIOTICA Section 1 - Objectives - Contents - Teacher manual Section 2 (document in progress - Educational resources UNESCO proposal for minimum bioethics course

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UNESCO Bioethics Core Curriculum

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- 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 UNESCO Bioethics Core Curriculum

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Implementation 1.materials available on website (english; arabic, french, russion and spanish) 2.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 UNESCO Bioethics Core Curriculum

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Potential Test Sites (interested universities): Africa: Masinde Muliro University of Science and Technology (Kenya) Arab States: Universit 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) UNESCO Bioethics Core Curriculum

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Ethics Education Programme Ethics teacher training course EEP Objectives: a.Learning how to teach ethics b.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

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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: (a)Assess the relevant ethical, legal, scientific and social issues related to research projects involving human beings; (b)Provide advice on ethical problems in clinical settings; (c)Assess scientific and technological developments, formulate recommendations and contribute to the preparation of guidelines on issues within the scope of this Declaration; (d)Foster debate, education and public awareness of, and engagement in, bioethics. Ethics committees

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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 Ethics committees

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localregionalnationalinternationalglobal International Bioethics Committee (IBC) Scottish Council on Human Bioethics Nuffield Council on Bioethics Bioethics committees: different levels Bioethics Commission of Hospital del Nio, Panama Council of Europe, Steering Committee on Bioethics (CDBI) Ethics committees

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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

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

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What is a National Bioethics Committee? Different models and approaches in existence - Committees connected to government - Committees connected to non-governmental organizations - 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 - Academy of Sciences: e.g. Madagascar, Tajikistan - National Science Foundation: e.g. Sri Lanka - Medical Association: e.g. Azerbaijan - Charity: e.g U.K.

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What is a National Bioethics Committee? Different tasks and roles Four forms of bioethics committees 1.Policy-making and/or Advisory Committee 2.Health-Professional Association Committees 3.Health care/Hospital ethics Committees 4.Research ethics Committees Goals: - Develop and advocate policies - Sound professional practices for patient care - Improve patient-centre care - Protect human research participants

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

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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

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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

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ABC Assisting Bioethics Committees 1.identification and data collection about existing committees 2.provision of practical information 3.technical support Series of Guidebooks 1.Establishing Bioethics Committees 2.Bioethics Committees at work 3.Educating Bioethics Committees GEObs database 2

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

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ABC Assisting Bioethics Committees technical support 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 Togo: January 2009 Ghana: January 2009 Jamaica: March 2009 Guinea: April 2009 Gabon: June 2009 Madagascar: ? (February 2009) Memorandum of Understanding Training of established committees