Universal Declaration on Bioethics and Human Rights

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Universal Declaration on Bioethics and Human
Rights
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1997
2003
2005
Universal Declaration on Bioethics and Human
Rights
standard-setting actions
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October 2001 Roundtable Ministers of Science
examine the possibility of developing a
universal instrument on bioethics
October 2001 31st General Conference
invite the DG to submit the technical and legal
studies undertaken regarding the possibility of
elaborating universal norms on bioethics
2002 2003 IBC feasibility study
Report on the Possibility of Elaborating a
Universal Instrument on Bioethics (June 2003)
October 2003 32nd General Conference
standard-setting actions
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The Mandate
The General Conference,

• considers that it is opportune and desirable to
  set universal standards in the field of bioethics
  with due regard for human dignity and human
  rights and freedoms, in the spirit of cultural
  pluralism inherent in bioethics

invites the Director-General to continue
preparatory work on a declaration on universal
norms on bioethics, by holding consultations with
Member States, the other international
organizations concerned and relevant national
bodies, and to submit a draft declaration to it
at its 33rd session.
32nd Session of the General Conference of UNESCO
- 200332 C/Resolution 24
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Towards a declaration on universal norms on
bioethics
QUERIES AND QUESTIONS

• what is universal norms or declaration?
• norms or principles?
• domain of bioethics
• focus on human beings (moral object vs subject)
• which general principles?
• specific issues increasing controversy
• which stakeholders States, scientists,
  professionals etc

Social issues
health care
environment
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Procedure
Three main phases

• 1. Pre-drafting consultation on the scope and
  structure
• January 2004 April 2004
• 2. Drafting process
• April 2004 January 2005
• 3. Finalization
• January 2005 September 2005

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Phase 1 Pre-drafting consultation
December April 2004 Determination of a
timetable
169th sessionExecutive Board
January April 2004 Broad consultations on the
scope and structure of the future declaration

• Written consultation with Member States
• questionnaires sent to 190 Member States 67
  returned (from all regions)
• - aims and scope of the declaration
• - structure of the declaration
• - content of the declaration
• 2. Extraordinary Session of IBC (27-29 April 2004)

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Extraordinary Session of IBC(Paris, 27-29 April
2004)
Intergovernmental Organizations Food and
Agriculture Organization of the United Nations
(FAO) World Intellectual Property Organization
(WIPO) United Nations University (UNU) The Arab
League Educational Cultural and Scientific
Organization (ALECSO) Organization for Economic
Cooperation and Development (OECD) Council of
Europe European Commission
Non Governmental Organizations World Medical
Association (WMA) Human Genome Organization
(HUGO) International Council for Science
(ICSU) Disabled Peoples International
(DPI) International Association of Bioethics (IAB)
National Bioethics Committees Japan New
Zealand Korea Tunisia Egypt France
Portugal United States of America United
Kingdom Republic of Côte dIvoire Republic of
Congo Russian Federation Croatia Mexico Dominican
Republic
Around 200 participants from 70 countries
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Phase 2 Drafting process
April 2004 January 2005
Public drafts on website 1st outline June
2004 2nd outline July 2004 3rd outline August
2004 4th outline December 2004

• 6 Meetings of Drafting Group (members of
  IBC)
• UN Inter-Agency Committee
• June and December 2004
• 3. National and regional consultations
• 4. 11th Ordinary session of IBC (hearing on
  religious and spiritual perspectives)
• August 2004
• 5. Written consultation on the Third Outline 75
  contributions received
• October December 2004
• 6. Joint session IGBC and IBC approval text IBC
• January 2005

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Phase 3 Finalization
February 2005 Official communication of the
preliminary draft 4-6 April 2005 1th
meeting of a committee of governmental
experts 12-28 April 2005 171st session of
Executive Board May June 2005 Informal
consultations 20-24 June 2005 2nd meeting of
a committee of governmental experts 12-30
September 2005 172nd session EXB 19 October
2005 Adoption by 33rd session of General
Conference
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Universal Declaration on Bioethics and Human
Rights

• Human dignity and human rights
• Benefit and harm
• Autonomy and individual responsibility
• Consent
• Persons without the capacity to consent
• Respect for human vulnerability and personal
  integrity
• Privacy and confidentiality
• Equality, justice and equity
• Non-discrimination and non-stigmatization
• Respect for cultural diversity and pluralism
• Solidarity and cooperation
• Social responsibility and health
• Sharing of benefits
• Protecting future generations
• Protection of the environment, the biosphere and
  biodiversity

Preambule General provisions aims scope Principl
es Application of the principles Promotion of the
declaration Final provisions
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Universal Declaration on Bioethics and Human
Rights
Application of the principles Art. 18
Decision-making and addressing bioethical
issues - transparency in decision-making -
dialogue and informed public debate Art. 19
Ethics committees Promotion of the
Declaration Art. 22 Role of States - take all
appropriate measures - encourage establishment
of ethics committees Art. 23 Bioethics
education, training and information Art. 24
Internation cooperation Art. 25
Follow-up-action by UNESCO
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Universal Declaration on Bioethics and Human
Rights
PROMOTION AND DISSEMINATION

• Promotion materials brochures, folders, website
  
• Translations
• Publications journals, media, newspapers
• Book with explanation per article
• Book with background materials
• Conferences, meetings etc.

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Universal Declaration on Bioethics and Human
Rights
CAPACITY-BUILDING making it work

• Global Ethics Observatory
• 2. Ethics Education Programme
• 3. Assisting Bioethics Committees

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Universal Declaration on Bioethics and Human
Rights
ELABORATION explain in more detail

• 2006-7 IBC working group on Consent
  (Articles 6 and 7)
• 2006-9 IBC working group on Social
  Responsibility and Health (Article 14)
• 2008 IBC working group on Human Vulnerability
  and Personal Integrity
  (Article 8)

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ETHICS OF SCIENCE AND TECHNOLOGY Website www.une
sco.org/shs/ethics