Presentation on theme: "Summerschool Health law and ethics"— Presentation transcript:
1 Summerschool Health law and ethics Erasmus University Rotterdam, July 2009Establishing and reinforcing bioethics infrastructure – the challenge of national bioethics committeesHenk ten Have, DirectorDivision of Ethics of Science and Technology, UNESCO, Paris
2 What is bioethics infrastructure? substance contentsReflection, analysisScientific and public debate, exchange of viewsActivities:- ResearchTeachingPolicy-adviceSpecific topics
3 What is bioethics infrastructure? Reflection, analysisActivities:- ResearchTeachingPolicy-advicesubstance contentsScientific and public debate, exchange of viewsSpecific topicspreconditions settingImmaterial conditions: time, opportunity; recognition, independencyTeaching programsResearch facilitiesPublic mediaBioethics committeesNational and international supportMaterial conditions: resources, networks, platforms
4 UNESCO: three practical projects: Global Ethics Observatory (GEObs) Assistance in reinforcing the ethics infrastructureUNESCO: 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 GEObsGlobal Ethics ObservatoryDatabase 1: experts (Who is who in ethics?)Database 2: institutions, organisations, commissionsDatabase 3: ethics teaching programmesDatabase 4: legislationDatabase 5: codes of conductDatabase 6: resources in ethicsexpertsinstitutionsprogrammes22 countries; 461 instruments151 codesresourcesFreely accessible6 languages: Arabic, Chinese, English, French, Russian, Spanish
11 Ethics Education Programme EEPEthics Education ProgrammeActivities undertakenmapping of experts in ethicssampling of teaching programsbioethics core curriculumethics teacher training courseethics resourcesRegional 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 programsDatabase 3: Ethics Teaching ProgrammesThis 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 2bioethics 51dental ethics 6engineering ethics 3environmental ethics 7ethics and law 10ethics and social sciences 5medical ethics 78nursing ethics 8pharmacy ethics 2philosophical ethics 22science ethics 6other 1Areas of ethics of science and technology
15 Ethics teaching programmes (201) UNESCO documents used in programsUniversal Declaration on the Human Genome and Human Rights 74International Declaration on Human Genetic DataUniversal Declaration on Bioethics and Human Rights
16 UNESCO proposal for minimum bioethics course BIOETHICS CORE CURRICULUMCURRICULUM PRINCIPAL EN BIOETHIQUECURRÍCULUM BÁSICO DE ESTUDIOS SOBRE BIOÉTICAОСНОВНОЙ УЧЕБНЫЙ ПЛАН ПО БИОЭТИКЕ生命伦理学主要教程المنهج الأساسي لتعليم أخلاقيات البيولوجياSection 2 (document in progress- Educational resourcesSection 1ObjectivesContentsTeacher manual
18 UNESCO Bioethics Core Curriculum - based on principles of Universal Declaration on Bioethics and Human Rightsproposes a minimum programflexibility: does not impose a particular modelglobal outreach: useful in all regionsheterogeneity: variety and diversity around a common coreaim: to facilitate the introduction of bioethics primarily in medical and science schools
19 UNESCO Bioethics Core Curriculum Implementationmaterials 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 EEPEthics Education ProgrammeEthics teacher training courseObjectives:Learning how to teach ethicsEmpowering a new generations of ethics teachersCourses2006 – 2007: Romania, Kenya, Slovak Republic and Kingdom of Saudi Arabia17-21 November 2008: Minsk, Belarus24-28 August 2009: Windhoek, Namibia
22 Ethics committeesUniversal Declaration on Bioethics and Human Rights (2005)Application of the principlesArticle 19 Ethics committeesIndependent, 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 committeesUniversal Declaration on Bioethics and Human Rights (2005)Promotion of the DeclarationArticle 22 Role of States2. 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 regionalnationalinternationalglobalBioethics Commission of Hospital del Niño, PanamaScottish Council on Human BioethicsNuffield Council on BioethicsCouncil of Europe, Steering Committee on Bioethics (CDBI)International Bioethics Committee (IBC)
25 National Bioethics Committees Recent global phenomenon1983: France1987: Denmark1991: Tunisia1992: Mexico1995: USA2000: Singapore2001: Germany2007: Spain, Guinea, Jamaica2009: Ghana
26 What is a National Bioethics Committee? No official definition in UNESCO; great heterogeneityDifferent namesFrance: Comité Consultatif National d’Ethique pour les sciences de la vie et de la santeAustralia: Australian Health Ethics CommitteeDenmark: Danish Council of Ethics (Det Etiske Rad)USA: President’s Council on BioethicsFinland: National Advisory Board on Health Care EthicsSubtile differences betweenCommittee 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 governmentSeparate legal entity: e.g. France, BrazilPresident: e.g. U.S.A.Ministry: e.g. GabonEntity within Ministry (UNESCO Commission): e.g. GuineaParliament: e.g. Switzerland- Committees connected to non-governmental organizationsAcademy of Sciences: e.g. Madagascar, TajikistanNational Science Foundation: e.g. Sri LankaMedical Association: e.g. AzerbaijanCharity: e.g U.K.
28 What is a National Bioethics Committee? Different tasks and rolesFour forms of bioethics committeesPolicy-making and/or Advisory CommitteeHealth-Professional Association CommitteesHealth care/Hospital ethics CommitteesResearch ethics CommitteesGoals:Develop and advocate policiesSound professional practices for patient careImprove patient-centre careProtect human research participants
29 What is a National Bioethics Committee? Central characteristics1. independency2. multidisciplinarity3. 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 technologiesA group (a chairperson and members) that are meeting regularlyFocus on issues that are not simply factual but normativeIt is not a research ethics committee; wider and different scope
31 What is a National Bioethics Committee? ‘National’ levelCommittees that operate at the level of Member States as a whole* impact on policy-making* credibilityRecognized as ‘national’ by the Member Statefor example: Nuffield Council on Bioethics
32 Assisting Bioethics Committees ABCAssisting Bioethics Committeesidentification and data collection about existing committeesprovision of practical informationtechnical supportGEObs database 2Series of GuidebooksEstablishing Bioethics CommitteesBioethics Committees at workEducating Bioethics Committees
33 Assisting Bioethics Committees ABCAssisting Bioethics Committeestechnical supportAssistance in establishing committees, if authorities are interestedTeams of experts from countries with experienced committees; practical recommendations how to proceedBotswana,Cape Verte,Chad,Colombia,El Salvador,Malaysia,Malawi,Mauritius,Nigeria,
34 Assisting Bioethics Committees ABCAssisting Bioethics Committeestechnical supportTraining of established committeesTogo: January 2009Ghana: January 2009Jamaica: March 2009Guinea: April 2009Gabon: June 2009Madagascar: ? (February 2009)Memorandum of Understanding3 years project of assistanceYear 1: - training working methodsdocumentationtraining secretariatYear 2: - training ethics- partnerships- public eventYear 3: - training ethics- networking