Establishing and reinforcing bioethics infrastructure – the challenge of national bioethics...
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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
Establishing and reinforcing bioethics infrastructure – the challenge of national bioethics committees Summerschool Health law and ethics Erasmus University
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
Slide 2
What is bioethics infrastructure? BIOETHICS substance contents
Reflection, analysis Scientific and public debate, exchange of
views Specific topics Activities: - Research - Teaching -
Policy-advice
Slide 3
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
Slide 4
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)
Slide 5
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?
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
Slide 16
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
Slide 17
UNESCO Bioethics Core Curriculum
Slide 18
- 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
Slide 19
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
Slide 20
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
Slide 21
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
Slide 22
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
Slide 23
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
Slide 24
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
Slide 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
Slide 26
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)
Slide 27
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.
Slide 28
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
Slide 29
What is a National Bioethics Committee? Central characteristics
1. independency 2. multidisciplinarity 3. pluralism
Slide 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
Slide 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
Slide 32
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
Slide 33
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
Slide 34
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