Universal Declaration on Universal Declaration on Bioethics and Human Bioethics and Human

RightsRights

standard-setting actions

Universal Declaration

onBioethics and Human Rights

19971997

20032003

20052005

standard-setting actions

October 2001: Roundtable Ministers of ScienceOctober 2001: Roundtable Ministers of Science

““examine the possibility of developing … a universal examine the possibility of developing … a universal instrument on bioethics…”instrument on bioethics…”

October 2001: 31October 2001: 31stst General Conference General Conference

invite the DG to submit the technical and legal invite the DG to submit the technical and legal studies undertaken regarding the possibility of studies undertaken regarding the possibility of elaborating universal norms on bioethicselaborating universal norms on bioethics

2002 – 2003: IBC feasibility study2002 – 2003: IBC feasibility study

Report on the Possibility of Elaborating a Universal Report on the Possibility of Elaborating a Universal Instrument on Bioethics Instrument on Bioethics (June 2003)(June 2003)

October 2003: 32October 2003: 32ndnd General Conference General Conference

The Mandate

“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

The General Conference,

Towards a declaration on universal norms on bioethicsTowards a declaration on universal norms on bioethics

QUERIES AND QUESTIONSQUERIES AND QUESTIONS

- what is universal: norms or declaration?what is universal: norms or declaration?

- norms or principles?norms or principles?

- domain of bioethicsdomain of bioethics

- focus on human beings (moral object vs subject)focus on human beings (moral object vs subject)

- which general principles?which general principles?

- specific issues: increasing controversyspecific issues: increasing controversy

- which stakeholders: States, scientists, professionals etcwhich stakeholders: States, scientists, professionals etc

healthhealthcarecare environmentenvironment

Social issuesSocial issues

Procedure

1. Pre-drafting consultation on the scope and structure

January 2004 – April 2004

2. Drafting processApril 2004 – January 2005

3. FinalizationJanuary 2005 – September 2005

Three main phases:Three main phases:

Phase 1: Pre-drafting consultationDecemberDecember –– April April 2004: 2004: DeDeterminationtermination of a timetable of a timetable

January – April 2004January – April 2004: : Broad consultations on the scope and Broad consultations on the scope and structure of the future declarationstructure of the future declaration

1.1. Written consultation with Member StatesWritten consultation with Member Statesquestionnaires sent to 190 Member States: 67 returned (from all questionnaires sent to 190 Member States: 67 returned (from all

regions)regions)

- aims and scope of the declaration- structure of the declaration- content of the declaration

2. 2. Extraordinary Session of IBCExtraordinary Session of IBC ( (27-29 April 200427-29 April 2004))

169th session169th sessionExecutive BoardExecutive Board

Extraordinary Session of IBC(Paris, 27-29 April 2004)

Intergovernmental Intergovernmental OrganizationsOrganizations

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 Non Governmental OrganizationsOrganizations

World Medical World Medical Association (WMA)Association (WMA)

Human Genome Human Genome Organization (HUGO)Organization (HUGO)

International Council for International Council for Science (ICSU)Science (ICSU)

Disabled People’s Disabled People’s International (DPI)International (DPI)

International International Association of Bioethics Association of Bioethics (IAB)(IAB)

National Bioethics National Bioethics CommitteesCommittees

JapanJapan

New ZealandNew Zealand

KoreaKorea

Tunisia Tunisia

EgyptEgypt

France France

PortugalPortugal

United States of AmericaUnited States of America

United KingdomUnited Kingdom

Republic of Côte d’IvoireRepublic of Côte d’Ivoire

Republic of CongoRepublic of Congo

Russian FederationRussian Federation

CroatiaCroatia

MexicoMexico

Dominican RepublicDominican Republic

Around 200 Around 200 participants from participants from 70 countries70 countries

Phase 2: Drafting process April April 2002004 – January 20054 – January 2005

1.1. 6 Meetings of Drafting Group 6 Meetings of Drafting Group (members of IBC)(members of IBC)

2.2. UN Inter-Agency CommitteeUN Inter-Agency CommitteeJune and December 2004June and December 2004

3. National and regional consultations3. National and regional consultations

4. 11th Ordinary session of IBC (hearing on 4. 11th Ordinary session of IBC (hearing on religious and spiritual perspectives)religious and spiritual perspectives)

August 2004

5. Written consultation on the Third Outline: 75 5. Written consultation on the Third Outline: 75 contributions receivedcontributions received

October – December 20046. Joint session IGBC and IBC: approval text IBC6. Joint session IGBC and IBC: approval text IBC

January 2005

Public drafts on Public drafts on websitewebsite

11stst outline: June 2004 outline: June 2004

22ndnd outline: July 2004 outline: July 2004

33rdrd outline: August outline: August 20042004

44thth outline: December outline: December 20042004

Phase 3: Finalization

* February 2005: Official communication of the * February 2005: Official communication of the preliminary draftpreliminary draft

* 4-6 April 2005: 1th meeting of a committee of * 4-6 April 2005: 1th meeting of a committee of governmental expertsgovernmental experts

* 12-28 April 2005: 171* 12-28 April 2005: 171stst session of Executive Board session of Executive Board

* May – June 2005: Informal consultations* May – June 2005: Informal consultations

* 20-24 June 2005: 2* 20-24 June 2005: 2ndnd meeting of a committee of meeting of a committee of governmental expertsgovernmental experts

* 12-30 September 2005: 172* 12-30 September 2005: 172ndnd session EXB session EXB

* 19 October 2005: Adoption by 33* 19 October 2005: Adoption by 33rdrd session of General session of General ConferenceConference

Universal Declaration on Bioethics and Human Rights

PreambulePreambule

General provisionsGeneral provisions

aimsaims

scopescope

PrinciplesPrinciples

Application of the principlesApplication of the principles

Promotion of the declarationPromotion of the declaration

Final provisionsFinal provisions

1.1. Human dignity and human rightsHuman dignity and human rights

2.2. Benefit and harmBenefit and harm

3.3. Autonomy and individual responsibilityAutonomy and individual responsibility

4.4. ConsentConsent

5.5. Persons without the capacity to consentPersons without the capacity to consent

6.6. Respect for human vulnerability and Respect for human vulnerability and personal integritypersonal integrity

7.7. Privacy and confidentialityPrivacy and confidentiality

8.8. Equality, justice and equityEquality, justice and equity

9.9. Non-discrimination and non-Non-discrimination and non-stigmatizationstigmatization

10.10. Respect for cultural diversity and Respect for cultural diversity and pluralismpluralism

11.11. Solidarity and cooperationSolidarity and cooperation

12.12. Social responsibility and healthSocial responsibility and health

13.13. Sharing of benefitsSharing of benefits

14.14. Protecting future generationsProtecting future generations

15.15. Protection of the environment, the Protection of the environment, the biosphere and biodiversitybiosphere and biodiversity

Universal Declaration on Bioethics and Human Rights

Application of the principlesApplication of the principles

Art. 18: Decision-making and addressing bioethical issuesArt. 18: Decision-making and addressing bioethical issues

- transparency in decision-making- transparency in decision-making

- dialogue and informed public debate- dialogue and informed public debate

Art. 19: Ethics committeesArt. 19: Ethics committees

Promotion of the DeclarationPromotion of the Declaration

Art. 22: Role of StatesArt. 22: Role of States

- take all appropriate measures- take all appropriate measures

- encourage establishment of ethics committees- encourage establishment of ethics committees

Art. 23: Bioethics education, training and informationArt. 23: Bioethics education, training and information

Art. 24: Internation cooperationArt. 24: Internation cooperation

Art. 25: Follow-up-action by UNESCOArt. 25: Follow-up-action by UNESCO

Universal Declaration on Bioethics and Human Rights

PROMOTION AND DISSEMINATIONPROMOTION AND DISSEMINATION

• Promotion materials: brochures, folders, Promotion materials: brochures, folders, website website

• TranslationsTranslations

• Publications: journals, media, newspapersPublications: journals, media, newspapers

• Book with explanation per articleBook with explanation per article

• Book with background materialsBook with background materials

• Conferences, meetings etc.Conferences, meetings etc.

Universal Declaration on Bioethics and Human Rights

CAPACITY-BUILDING: making it workCAPACITY-BUILDING: making it work

1.1. Global Ethics ObservatoryGlobal Ethics Observatory

2. Ethics Education Programme2. Ethics Education Programme

3. Assisting Bioethics Committees3. Assisting Bioethics Committees

Universal Declaration on Bioethics and Human Rights

ELABORATION: explain in more detailELABORATION: explain in more detail

• 2006-7: IBC working group on Consent 2006-7: IBC working group on Consent (Articles 6 and 7)(Articles 6 and 7)

• 2006-9: IBC working group on Social 2006-9: IBC working group on Social Responsibility and HealthResponsibility and Health

(Article 14)(Article 14)

• 2008: IBC working group on Human Vulnerability 2008: IBC working group on Human Vulnerability and Personal Integrity and Personal Integrity

(Article 8)(Article 8)

ETHICS OF SCIENCE AND TECHNOLOGY

Website:

www.unesco.org/shs/ethics