Eighteenth Session of the International Bioethics Committee

31 May - 2 June 2011

Baku, Azerbaijan _______________

Wednesday 1 June 2011

Progress report on UNESCO Bioethics Programme

1. Ms Dafna Feinholz Chief of the Bioethics Section, Division of Ethics of Science and Technology, Social and Human Sciences Sector, UNESCO Title of presentation: “The role of UNESCO in Promoting Bioethics: Steps ahead”

2. Ms Alla Ampar

UNESCO Moscow Office & Prof. (Ms) Olga Kubar, Head of the Clinical Department, Saint-Petersburg Pasteur Institute, Russian Federation Title of presentation: “UNESCO initiatives in Eastern Europe in the field of Bioethics“

The role of UNESCO in The role of UNESCO in Promoting Bioethics:Promoting Bioethics:

Steps aheadSteps ahead

Division of Ethics of Science and Technology

1818thth Session of the International Session of the International Bioethics Committee (IBC), Baku, Bioethics Committee (IBC), Baku, Azerbaijan, 31 May Azerbaijan, 31 May –– 3 June, 3 June, 2011

BackgroundBackground

In 1993: development of a formal programme

From 1993-2005: Standard Setting Action

• Universal Declaration on the Human Genome and Human Rights (1997, endorsed by the UN General Assembly in 1998)

• International Declaration on Human Genetic Data (2003)• Universal Declaration on Bioethics and Human Rights (2005).

From 2005:

Efforts to disseminate, promote, apply and elaborate the principles of the UDBHR

I. ELABORATION OF THE PRINCIPLES.I. ELABORATION OF THE PRINCIPLES.

International Bioethics Committee: International Bioethics Committee:

Unique global intellectual forum for a multidisciplinary, Unique global intellectual forum for a multidisciplinary, pluralistic and multicultural reflection on ethical and pluralistic and multicultural reflection on ethical and legal issues raised by legal issues raised by resereseararchch in life sciences and in life sciences and thetheirir applications.applications.

Advisory role in:Advisory role in:•• Capacity building Capacity building •• Education and awarenessEducation and awareness

I. ELABORATION OF THE PRINCIPLES.I. ELABORATION OF THE PRINCIPLES.

Division de l’éthique des sciences et des technologies – Section Bioéthique

Universal Declaration onUniversal Declaration on Bioethics and Human RightsBioethics and Human Rights

Adopted by the General Conference of UNESCO in 2005

Article 25 – Follow-up action by UNESCO

1. UNESCO shall promote and disseminate the principles set out in this Declaration. In doing so, UNESCO should seek the help and assistance of the Intergovernmental Bioethics Committee (IGBC) and the International Bioethics Committee (IBC).

Division de l’éthique des sciences et des technologies – Section Bioéthique

New Series:Reports of IBC on the principles of the Universal Declaration on Bioethics and Human Rights:

• Consent

• Social Responsibility and Health

2008-2009

I. ELABORATION OF THE PRINCIPLES.I. ELABORATION OF THE PRINCIPLES.

WWorkork ProgrammeProgramme for the biennium 2010for the biennium 2010--20112011

IBC will continue its work on:IBC will continue its work on:1.1.The principle of respect for human vulnerability aThe principle of respect for human vulnerability andnd personal personal

integrity (Art. 8)integrity (Art. 8)2. Human Cloning and International Governance 2. Human Cloning and International Governance (previous report (previous report

and discussions in Mexico city at the 17and discussions in Mexico city at the 17thth Session, 2009)Session, 2009)Focusing on: Focusing on: Terminology and their ethical impactTerminology and their ethical impactDifferent options for legal regulation of human reproductive cloDifferent options for legal regulation of human reproductive cloningningProposals for dissemination activities concerning human cloning Proposals for dissemination activities concerning human cloning and and

international governanceinternational governance3.Traditional medicine and its ethical implications3.Traditional medicine and its ethical implications

II. Application of Principles: Capacity building:

Assistance in reinforcing the ethics infrastructures

Three practical projects:Three practical projects:

•Assisting Bioethics Committees (ABC)

•Ethics Education Program (EEP)

•Global Ethics Observatory (GEObs)

Universal Declaration on Bioethics and Human Rights

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.

Assisting Bioethics Committees Project (ABC) Main Objective: To reinforce bioethics infrastructure in Member States through facilitating the establishment of national bioethics committees,

and, once established, through the enhancement of their technical capacities

3 Steps of the ABC Project3 Steps of the ABC ProjectStep I. Exploration and assessment of the existing bioethics infrastructure

in the country

Step II. Technical support for the establishment of the national bioethics committee

Step III. Technical support for long-term sustainability

a. Technical capacity-building trainingsb. Partnerships, internships and networking

c. Provision of practical information

European Commission-UNESCO Conference: Joint Action for Capacity-building in Bioethics

Mexico City, 26-28 November 2009Conference structured around three major themes:- Emerging bioethics issues- Building an international network- Engaging in ethical discourse

Over 100 participants from all regions of the world agreed on:

•Using and promoting the available resources, such as the databases of the UNESCO Global Ethics Observatory (GEObs), as platforms of exchange of knowledge and information

•Promoting regional bioethics networks that actively facilitate exchange of knowledge and best practices concerning bioethical issues of common concern

•PUBLICATION: NATIONAL BIOETHICS COMMITTEES IN ACTION: English and French (2010)

Assisting Bioethics Committees Project (ABC) Step III. Technical support

c. Provision of technical information

UNESCO Guides

Guide N°1: Establishing Bioethics CommitteesGuide N°2: Bioethics Committees at Work: Procedures and PoliciesGuide N°3: Educating Bioethics CommitteesGuide N°4: Ethics Committees and Public PoliciesGuide N°5: Ethics Committees and Public Debate

Available in English, French, Spanish, Russian, Arabic, Chinese, Turkish

Other materials

UNESCO, in partnership with the Kennedy Institute of Ethics (Georgetown University) and the Commission nationale d’éthique du Québec. IBC REPORT

Assisting Bioethics Committees Project (ABC) Present state of the ABC Project

Countries that have already established NBC Countries considering the

establishment of NBC

El Salvador (2010)Malaysia (2010)Jamaica (2009)Colombia (2009)Cote d’Ivoire (2002)El Salvador (2009)Gabon (2008)Ghana (2009)Kenya (2009)Mali (2009)Oman (2009)Madagascar (2007)Guinea (2007)Togo (2007)

Cap-VerdeChadChinaComorosMalawi MauritiusNamibiaNigerNigeria Trinidad and Tobago

Assisting Bioethics Committees Project (ABC) Present state of the ABC Project

NBCs that have signed MoU with UNESCO

Côte d'Ivoire (first training Dec. 2009)Gabon (first training June 2009)Ghana (first training Jan. 2009)Guinea (first training April 2009)Jamaica (first training March 2009)Kenya (first training Nov. 2009)Togo (first training Jan. 2009)El Salvador (First training in Sep. 2010)

Trainings in 2011

Jamaica (Second training in 4-8 April 2011)Guinea (Second training in Summer 2011) Gabon (Second training in Summer 2011)Togo (Second training in Fall 2011)Ghana (Second training in Fall 2011)Kenya (Third training, Nov. 2011)El Salvador (Third training 2011?)Colombia (First training in Fall 2011)?

Assisting Bioethics Committees Project (ABC) Feasibility study on introducing web based

training modules for ABC project

In order to expend the coverage without compromising the quality of its engagement with the beneficiaries, we are exploring possibilities for introducing new information technologies and distance-learning methodologies, such as e- learning, webcasting and teleconferencing as tools for broader, more efficient and effective dissemination of information and capacity-building in bioethics. A feasibility study has been commissioned in this regard with Open University of the UK.

II. Application of Principles: Capacity building:

Assistance in reinforcing the ethics infrastructures

Ethics Education Program (EEP)

Launched at 1993 and expanded in 2005:

Art. 23 UDBHR encourages Member States to “foster

bioethics education and training at all levels as well to

encourage information and knowledge dissemination

programmes about bioethics”

EEP 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

Regional expert meetings:

Budapest (2004)

Moscow (2005)

Split (2005)

Tehran (2006)

Muscat (2006)

Istanbul (2007)

Marrakech (2008)

Abidjan (2008)

Dakar (2009)

Kinshasa (2009)

Windhoek (2010)

EEP Ethics Teacher Training Course (ETTC)

The Ethics Teacher Training Courses (ETTC) project targets the young generation of experts and educators who are engaged in teaching ethics at various academic faculties and institutions around the world.

Ethics Teachers Training Courses are designed to:

• introduce the participants to the means and resources of teaching ethics;

• teach the participants the methodologies and methods of teaching ethics; and

• assess and provide feedback on the participants’ demonstrations of teaching skills under the guidance of experienced teachers.

EEP Ethics Teacher Training Course (ETTC)

In the past, the Ethics Teacher Training Courses have been held in the following locations:

Bucharest, Romania (2006) Egerton University Njoro Campus, Kenya (2007) Bratislava, Slovakia (2007) Riyadh, Saudi Arabia (2007) Minsk, Belarus (2008) Dubrovnik, Croatia (2010)

In 2011, ETTC are planned in:

Belgrade, Serbia (27 June – 1 July 2011)Dubrovnik, Croatia (4 – 8 July 2011)Windhoek, Namibia (Fall 2011)Nairobi, Kenya (Fall 2011)

UNESCO Bioethics Core Curriculum

NEW• 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

NEWSupplements to the UNESCO Bioethics Core

Curriculum:

• Casebook on Benefit and Harm• Casebook on Human Rights and Human

Dignity

Designed to be used with the Core Curriculum, or as stand-alone study material for one of the bioethical principles in the Declaration.

Freely available in hardcopy, in CD-ROM as well as for electronic download through the UNESCO website (www.unesco.org)

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

Freely accessible

6 languages: Arabic, Chinese, English, French, Russian, Spanish

www.unesco.org/shs/ethics/geobs

experts 1406

institutions 437

programmes 230

22 countries; 468 instruments

151 codes

resources 212

UNESCO Chairs in BioethicsKenya Egerton University, Njoro

Côte d'Ivoire University of Bouaké

Argentina University of Buenos Aires

Brazil University of Brasilia, Brasilia

Mexico Instituto Nacional de Enfermedades Respiratorias, México

Peru University Feminina del Sagrado Corazón, Lima, with La Sociedad Española de Biojurídica y Bioética, Madrid

Israel University of Haifa, Haifa

Spain University of Barcelona

Italy The Ateneo Pontificio Regina Apostolorum, Università Europea di Roma

Portugal Universidade Católica Portuguesa

Slovakia University of Presov

United States Ethics and Public Policy Center

III. DISSEMINATION OF PRINCIPLES

Meetings organized by Chairs:

Zefat, Israel (May 2009): International Conference on Ethics Committees, organized by the UNESCO Chair in Bioethics in University of Haifa

- Brasilia, Brazil (August 2009): Seminar on National Council of Bioethics, organized by the UNESCO Chair in Bioethics in University of Brasilia

Regional Documentation Centres:

• Are an important resource for future activities

•

Make information and documentation from the region itself

available and distribute information materials from other

regions and UNESCO.

Centres have been established in:

• Vilnius (Lithuania)

• Eagerton (Kenya)

UNESCO Regional Documentation Centres

III. DisseminationPublications - February 2009: English version

-French translation ready

-Director of the Division and IBC member

Each chapter focused on one Article analyzing 3 questions:

1. Why is this Article in the Declaration?

2. What does the Article mean in the context of the Declaration?

3. How can the Article be applied?

INTERANTIONAL COOPERATION INTERANTIONAL COOPERATION AND COORDINATION AND COORDINATION UN InterUN Inter--Agency Committee on BioethicsAgency Committee on Bioethics

2003. UNESCO permanent Secretariat2003. UNESCO permanent Secretariat

Members: OHCHR, UNU, FAO, ILO, UNESCO, WHO, WIPOAssociate Members: ALECSO, CoE, EC, ICGEB, AU, OECD, WTO

Promotes coordination and cooperation in the activities and identifies areas of cooperation to enhance the impact of activities through coordinated and interactive approaches.

ONGOING ACTIVITIES:COOPERATION IN THE FIELD OF CAPACITY BUIDING AND NATIONAL BIOETHICS

COMMITTEES.

RECENT ISSUE:

The Economic and Social Council considered the issue of genetic privacy and non- discrimination at its 2001, 2004, 2007 and 2008 sessions. At its substantive session of 2008 the Council adopted the ECOSOC decision 2008/233 by which it:………relevant to genetic privacy and non-discrimination, and on a possible inter-agency coordination mechanism;

Report:

• Consultations with Member States on relevant developments in the field of genetic privacy and non- discrimination and on a possible inter-agency coordination mechanism.

• Consultation with other UN agencies, extended to other relevant intergovernmental organizations, on the implementation of activities relevant to genetic privacy and non-discrimination and on a possible inter-agency coordination mechanism.

ETHICS OF SCIENCE AND ETHICS OF SCIENCE AND TECHNOLOGYTECHNOLOGY

Our website:

www.unesco.org/bioethics

UNESCO INITIATIVES IN EASTERN EUROPE IN THE FIELD OF BIOETHICS

Alla Ampar, UNESCO Moscow Office

Olga Kubar, IBC

18 session IBC, Baku, Azerbaijan,1 June, 2011

Guided by the UNESCO Strategy and principles of the “Universal Declaration on Bioethics and Human Rights”, since 2006 the Social and Human Sciences Sector of the UNESCO Moscow Office identified the following principle cluster priorities:

- establishment and support of activities of existing national bioethics committees, in line with UNESCO Programme “Assisting Bioethics Committees” (ABC)

- assistance and comprehensive support of national initiatives with respect to development of educational programmes on ethics and bioethics, in line with UNESCO Programme “Ethics Education Programme” (EEP)

“ASSISTING BIOETHICS COMMITTEES” (ABC)

2000 - 2007 National Committees on Bioethics established in all cluster countries of the UNESCO Moscow Office

Since 2008 focus on the networking and capacity-building of the Committees

CONGRESS «BIOETHICS AND HUMAN RIGHTS»(2008, Kazan, Tatarstan, Russian Federation) creation of CS Regional Network of National Bioethics Committees

Goal: to foster the exchange of information, support decision-making, develop tools for standard setting, and strengthen coordination among experts and institutions in the region

“ETHICS EDUCATION PROGRAMME” (EEP)

2008 ETHICS TEACHER TRAINING COURSE (Minsk, Belarus) young teachers from 8 countries became acquainted with the methodologies, methods, means and resources of teaching ethics

2009 SUBREGIONAL MEETING OF EXPERTS IN BIOETHICS TEACHING (Chisinau, Republic of Moldova) focused on issues, tendencies and perspectives of international cooperation of bioethics education

Established Sub-regional Association for Education in Bioethics is aimed at increasing capacities of CIS countries in the area of ethics education

“ETHICS EDUCATION PROGRAMME” (EEP)

2009 INTERNATIONAL OMBUDSMAN CONFERENCE "BIOETHICS, HUMAN RIGHTS AND NEW TECHNOLOGIES: LEGAL AND ETHICAL ASPECTS OF REPRODUCTIVE HEALTH AND FAMILY PLANNING” (Baku, Azerbaijan)

- focused on current issues in the field of human rights related to rapid developments in science and technology, as well as ethical issues raised by advances in science

2010 REGIONAL SEMINAR "BIOETHICS EDUCATION AT ARMENIAN UNIVERSITIES: PROBLEMS AND PERSPECTIVES" dedicated to the 5th anniversary of the UNESCO Universal Declaration on Bioethics and Human Rights (Yerevan, Armenia)

“ETHICS EDUCATION PROGRAMME” (EEP)

- emphasized the importance and necessity of training of specialists and improving all activities aimed at popularizing the ideas and values of bioethics and human rights in CIS countries

Since 2010 pilot testing of Bioethics Core Curriculum was conducted in

- Lomonosov Moscow State University (Russia)- Kazan State Medical University (Tatarstan, Russia)- International Sakharov Environmental University (Belarus) - Yerevan State Medical University (Armenia)

2010 UNESCO BIOETHICS CORE CURRICULUMpublished in Russian

“ETHICS EDUCATION PROGRAMME” (EEP)

2006 - 2011 LONG-TERM PROJECT «BIOETHICS AND MEDIA»aimed to promote ethical principles, to sensitize the public, to raise the awareness of bioethics among journalists and introduce bioethical issues into the agenda of the mass media of the cluster countries

- several round tables, workshops and seminars were held focusing on bioethics issues in the mass media- cross-regional network of journalists interested in the promotion of bioethics in the media was set up- several hand-books on problems of bioethics in the mass media were published for journalists with recommendations for journalists on how to cover sensitive bioethical issues- integrated training programme for distance education (e-learning) on bioethics for journalists elaborated

Ar.2.(c) - to promote respect for human dignity and protected human rights…. consistent with international human rights lawAr.2.(e) – to faster multidisciplinary and pluralistic dialogue about bioethical issues between all stakeholders and within society as a wholeAr.1.2. Addressed to States Ar. 12 Respect for cultural diversity and pluralism Ar. 13 Solidarity and cooperation

Assisting Bioethics Committees (ABC)Ethics Education Program (EEP)Global Ethics Observatory (GEObs)

UDBHR - 2005

Dissemination of the principlesPromotion of the principlesElaboration of the principles Application of the principles

Permanent Commission of IPA CIS on science and education

FECCIS Legislative Initiatives

Model Law ‘On the Protection of Human Rights and Dignity in Biomedical Research in the Member States of the Commonwealth of Independent States - approved by Council of IPA CIS on 18 November 2005Model Recommendation for Ethical and Legal Regulation in Genetic Research in the CIS states – approved by Council of IPA CIS on 31 October 2007Model Recommendation - Conception to Collaboration the CIS member-states in Medical Education on Bioethics in complains with UNESCO Ethics Education Programme (EEP) - approved by Council of IPA CIS on 8 April 2009Declaration IPA CIS Ethical Principals of Scientific Activity –ongoing – approved as the base by Permanent Commission on Science & Education, Kiev, Ukraine, 29 April 2011

to ensure the protection of honor, dignity & human rightsto ensure credibility and reliability of research resultsto create single lawful space in CIS to guaranty by ethical review the basic measures for protection of each individual & communitiesto integrate & harmonize the CIS in international level in research

Currently the member states work on implementation of the Model Law into national legislation: National Law Republic Moldova “On Health Care” (2007), National Law Republic Kazakhstan “On Health Care System” (2007), National Law Republic Belarus “On Health Care” (2008), Order of Ministry Health Care on Biomedical Studies, Russia, 2010

1. On the Protection of Human Rights and Dignity in Biomedical Research in the CIS, 2005

Ethical Problems Related to Genetic ResearchYerevan, Republic Armenia, 2005

GENETIC TECHNOLOGIES IN THE FRAMEWORK OF SCIENTIFIC ACTIVITYGENETIC TECHNOLOGIES IN THE FRAMEWORK OF MEDICAL CARE Respect for human dignity Access to achievements in the field of genetic technologies Safety of genetic researchAutonomy of individuals participating in biomedical genetic research or receiving medical genetic treatmentApplication of genetic technologies to vulnerable contingents

Universal Declaration on the Human Genome and Human Rights (1997)International Declaration on Human Genetic Data (2003)

2. Model Recommendation for Ethical and Legal Regulation in Genetic Research in the CIS, 2007

Legal and Ethic aspects of reproductive health and family planning with using the new technologies Baku, Azerbaijan, 2009

ANALYTICAL REVIEW

Graduated in UniversityPost-graduatedThesis - PhDEducation of public/societyBioethics association & group

3. Conception to Collaboration the CIS member-states in Medical Education on Bioethics in complains with UNESCO

Ethics Education Programme (EEP) - 2009

Sub-Regional UNESCO expert’ meeting on development of the cooperation and establishment regional association for education in bioethics, Chisinau, Moldova, May 28-29, 2009

4. Declaration IPA CIS “Ethical Principals of Scientific Activity”, 2010 – in progress

Analytical Note – “Social responsibility of scientists. Towards Ethical Regulation of Scientific Conduct”

The State-of-the-Art Review on the Attitude of the Scientific Community in the CIS Countries to the Ethical Regulation of Scientific Activities (Results of the Research Conducted by a Project Group)

Recommendation on the Status of Scientific Researchers, UNESCO Paris., 1975

COMEST International Declaration “On Science Ethics”2000- 2006, 2008 – in progress

Analytical NoteEthical Regulation of Scientific Activity(International Experience & Ethical Regulation of Scientific Activity in the CIS)The Development of the Normative DocumentOn the Ethical Principles of Scientific Activity (Various Formats of Normative Ethical Documents & Results of the Research Conducted by a Project Group)

Attitude of the Scientific Community in the CIS

40% - teaching staff, 50% --high-level managers of higher education, and 10% -state authorities supervisingValues: fairness, responsibility consequences of research, determination in searching the truth, academic freedom, creativity, openness

Ethical Review of Biomedical Research in the CIS (Social and Cultural Aspects), 2007ANALYTICAL REVIEW THE CURRENT STATE OF BIOETHICS EDUCATION IN THE SYSTEM OF MEDICAL EDUCATION IN THE CIS MEMBER COUNTRIES, 2010

Topography of bioethics in 11 countries (culture, legislation, science, education, communications, EC system)

Regional contribution

GlobalGlobalEthics ObservatoryEthics Observatory

Acknowledge