This second version of an outline
of a declaration on universal norms on bioethics has been elaborated by the
Drafting Group for consideration by the International Bioethics Committee (IBC)
at its Eleventh Session (
It was revised following a
preliminary review by the IBC Drafting Group at its third meeting (Paris, 8-9
July 2004), taking into consideration the observations formulated during the
information meeting of the Intergovernmental Bioethics Committee (IGBC) (Paris,
7 July 2004) and the third meeting of the UN Interagency Committee on Bioethics
(Paris, 24-25 June 2004).
Declaration
on Universal Norms on Bioethics
or
Universal
Declaration on Bioethics and Humanity [Humankind / Human Beings]*
The General Conference,
Recalling the Universal Declaration on the Human Genome
and Human Rights adopted by the General Conference of UNESCO on
Also
recalling the Universal
Declaration of Human Rights of 10 December 1948, the two United Nations
International Covenants on Economic, Social and Cultural Rights and on Civil
and Political Rights of 16 December1966, the United Nations International Convention
on the Elimination of All Forms of Racial Discrimination of 21 December 1965,
the United Nations Convention on the Elimination of All Forms of Discrimination
against Women of 18 December 1979, the United Nations Convention on the Rights
of the Child of 20 November 1989, the United Nations Convention on Biological
Diversity of 5 June 1992, the Recommendation of UNESCO on the Status of
Scientific Researchers of 20 November 1974, the UNESCO Declaration on Race and
Racial Prejudice of 27 November 1978, the UNESCO Declaration on the
Responsibilities of the Present Generations Towards Future Generations of 12
November 1997, the UNESCO Universal Declaration on Cultural Diversity of 2
November 2001, the Trade Related Aspects of Intellectual Property Rights Agreements
(TRIPs) annexed to the Agreement establishing the World Trade Organization,
which entered into force on 1 January 1995, the Doha Declaration on the TRIPs
Agreement and Public Health of 14 November 2001 and the other international
human rights instruments adopted by the United Nations and the specialized
agencies of the United Nations system, {{the
Standard Rules on the Equalization of Opportunities for Persons with
Disabilities”. Official Records of the
General Assembly, Forty-eighth Session, Supplement No. 49 (A/48/49), vol. 1,
chap. VII, General Assembly resolution 48/96, annex, of 20 December 1993;
the “Declaration on the Rights of Disabled Persons”. Official Records of the General Assembly,
Thirtieth Session, Supplement No. 34 (A/10034), Proclaimed by General Assembly
resolution 3447 (XXX) of
the Committee on Economic, Social Rights and Cultural Rights;
General Comment No. 5 - “Persons with disabilities: 09/12/94” (Eleventh
session, 1994). Official Records of the
Economic and Social Council, Supplement No. 3 (E/1995/22) annex IV
the Committee on the Elimination of Discrimination against Women;
General Recommendation No. 19 - “Disabled women: 04/01/91” (Tenth Session,
1991). Official Records of the General Assembly, Forty-sixth Session,
Supplement No. 38 (A/46/38); Report of the Committee on the Elimination of
Discrimination against Women (Tenth session)
the UN Economic and Social Council resolution 1997/20 Children with
disabilities Official Records of the General Assembly, Thirtieth Session,
Supplement No. 34 (A/10034), Proclaimed by General Assembly resolution 3447
(XXX) of 9 December 1975 Proclaimed by General Assembly resolution 2856 (XXVI)
of 20 December 1971,
Organization of American States. “Inter-American Convention on the
Elimination of All Forms of Discrimination against Persons with Disabilities
AG/RES.1608” (XXIX-0/99),
and the in the moment ongoing consultations within the UN of
an United Nations Comprehensive and Integral International Convention to
Promote and Protect the Rights and Dignity of Persons with Disabilities[3] }}
Also
recalling the Convention for
the Protection of Human Rights and Dignity of the Human Being with regard to
the Application of Biology and Medicine: Convention on Human Rights and Biomedicine
of the Council of Europe, adopted in 1997 and entered into force in 1999, as
well as the other international and regional instruments, national legislation
and regulations in the field of bioethics,
Also
recalling the international
and regional codes of conduct and guidelines and other ethical texts in the
field of science and technology
Considering
that, by virtue of its
Constitution, it is incumbent upon UNESCO to promote “the democratic principles
of the dignity, equality and mutual respect of men” and to reject any doctrine
“of the inequality of men and races” {{and “of
the inequality of men based on other characteristics”,}} and that this constitutes a sacred duty which all the
nations must fulfil in a spirit of mutual assistance,
* The words in [square brackets] offer variants
of the wording concerned.
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Considering
also that it is the mission
of UNESCO to develop universal principles and norms based on shared values to
guide scientific and technological development and social transformation, in
order to meet emerging challenges {{flowing from
scientific advancements }}taking
into account the responsibility of the present {{towards
every human being}} in future
generations
Bearing in
mind UNESCO’s activities and
programmes in the field of natural, social and human sciences, aiming at
placing scientific and technological development in a context of ethical {{and societal }} reflection, and {{at promoting and
conservation of human and no human
biological diversity and sustainable use of non human biological diversity}}
and the improvement of the relationship between human beings and their
environment,
Aware that human beings are an integral part of the
biosphere and that they have responsibilities and duties towards other forms of
life,
{{Aware that many
genetic and biomedical practices violate the human rights of people with
disabilities;
Aware
that there is a lack of transparent public discussion on the themes that
presently affect and will affect in the future the social well being of human
life;
Aware
that there is a reemerging of eugenic practices and an increase commodification
of human being}}
Recognizing
that scientific and
technological developments have been of great benefit to humankind in
increasing inter alia life expectancy and improving {{social well being}} of some but also
recognizing that the governance of science and technology {{lead to the
10/90 health research gap and stigmatization and discrimination of certain
groups of human beings}} and emphasizing that such developments
should always promote the welfare of individuals and humankind as a whole in
the recognition of the inherent dignity of the human person and the universal
respect for, and observance of human rights and fundamental freedoms,
Bearing in
mind that, without prejudice
to the universal respect for, and observance of human rights and fundamental
freedoms, cultural diversity, as a source of exchange, innovation and
creativity, is necessary for humankind and, in this sense, it is the common
heritage of humanity,
Convinced that ethical reflection {{should be}} an integral part of scientific and
technological and {{societal}} development and that bioethics {{should play}}
a predominant role in the social choices that need to be made,
Stressing the need to reinforce international
cooperation in the field of bioethics, taking into account in particular the
special needs of developing countries {{and
disadvantaged social group}}s
Considering
that questions of bioethics
raised by advances in science and technology, which have been addressed in part
by the Universal Declaration on the Human Genome and Human Rights and the
International Declaration on Human Genetic Data, should be treated as a whole,
drawing on the principles already affirmed in these two international
instruments and taking account not only of the current scientific context but
also of future developments,
Proclaims the principles that follow and adopts the
present Declaration.
[Use of Terms]
(Limited to
scientific terms)
General Provisions
Scope
The
principles set out in this Declaration:
(i) apply to
human beings, while recognizing that human beings have responsibilities and
duties towards other forms of life in the biosphere, and
(ii) apply to issues raised by scientific and
technological developments and their applications, as well as their
availability and access.
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Aims
The aims of this
Declaration are:
{{- to provide a universal framework of fundamental principles and basic procedures designed to form the basis for reflection and consideration in bioethical matters for the institutions, groups and individuals concerned; and to guide States in the formulation of their legislation and their policies in the field of bioethics}}
- to ensure the
respect for human dignity and the protection of human rights and fundamental
freedoms in [the sphere of] bioethical decision making, in accordance with
human rights law;
- to promote
respect for {{human and non-human}}
biodiversity;
- to recognize the
great benefit derived from scientific and technological developments, whilst
ensuring that such development occurs within the framework of ethical
principles that respect human dignity and protect human rights and fundamental
freedoms, and to prevent practices contrary to human dignity;
{{- to foster dialogue between society as a whole and scientists, health professionals, lawyers, philosophers, ethicists, theologians, NGO’s, intellectual and professional groups concerned and policy makers; }}
- to promote the
sharing and the greatest possible flow of knowledge concerning scientific and
technological developments as well as the sharing of benefits, in particular
with developing countries;
- to safeguard the
interests of present and future generations.
General [Fundamental] Principles
Human Dignity,
Human Rights and Justice
{{Bearing
in mind that the term human person should not be based on the existence of
certain abilities;
bearing
in mind that human persons are subjected to
discrimination and stigmatization and bearing in
mind }}that the principles
set out in this Declaration derive [are drawn / flow] from the inherent dignity
of the human person and the duty to promote universal respect for, and
observance of human rights and fundamental freedoms, any decision or practice
within the scope of this Declaration [to which this Declaration applies] shall
be made or carried out in the respect of the inherent dignity of the human
person, and in accordance with the universal principles of justice, human
rights and fundamental freedoms.
Responsibility
for [towards] the Biosphere
Any decision or
practice within the scope of this Declaration [to which this Declaration
applies] shall have due regard for the impact on the interconnections of all
life forms and the special responsibility of human beings for the protection of
life {{in its human and non human diversity
}}and of the biosphere within which human beings exist.
Beneficence
{{Any decision or practice within the scope of this Declaration [to which this Declaration applies] shall optimize the positive benefits and reduce the harms of such decision or practice. }}
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Cultural
Diversity, Pluralism and Tolerance
Any decision or
practice within the scope of this Declaration [to which this Declaration
applies] shall take into account the various schools of thought, value systems,
historical and cultural backgrounds, and philosophical and religious traditions
that make up our societies. However, cultural diversity shall not be invoked to
infringe upon the principles set out in this Declaration, nor to limit their
scope.
Solidarity,
Equity and Cooperation
Any decision or
practice within the scope of this Declaration [to which this Declaration
applies] shall be guided by the solidarity of humanity, in order to avoid
discrimination and stigmatization of an individual, a family or a group, to
ensure equity and to encourage the sharing of scientific knowledge and
cooperation.
Implication of the [Fundamental]
General Principles
Primacy of
the human person
{{Social well being of every human being
Responsibility of human beings for each others
Conservation of the environment}}
Non-discrimination
and non stigmatization
{{All persons who may be affected by social
stigmas, such as people with disabilities and others must be educated in their human rights.
All forms of discrimination must be prohibited.}}
Autonomy
{{Consent The human rights of
people with disabilities who are unable to consent are not to be violated by
medical and other invasive interventions}}
Confidentiality
and Right to Information
{{The right for information has to include in the case of genetic and non genetic prenatal or preimplantation counseling medical and non medical data}}
Benefit
sharing
.
Specific Issues
Scientific
research
Healthcare
{{The unavailability of health care to the poor and other disadvantaged groups has to be abolished. }}
Human
Reproduction and the Beginning of Life
Reproductive
human cloning
End of
Life
{{End of life issues should never be phrased in a way where it targets only certain social groups within society such as the so called incurable.}}
Palliative care
{{Tissue and Organ Transplantation
Being a person with a disability should not exclude one from being a recipient of tissue or organ transplants}}
Genetic
and other Personal Healthcare Data
Germ-line
interventions
Sex
Selection replace with “Selection based on genetic and non
genetic characteristics”
{{If pre natal and
preimplantation sex selection is within the scope of this document than it has to be extended to the selection or deselection
of every characteristics if we want to avoid stigmatization and discrimination}}
Pharmacogenetics
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Non-commercialization
of the human body and its parts
Generic
drugs
Right to
healthy food
Right to a
healthy environment
Procedures [Procedural Principles]
Provision on
procedures which should be followed at national and international level in
science and technology, in particular:
the
need for democratic and transparent procedures,
rationality
and agreement,
intellectual
honesty and integrity of research,
principles
governing the dissemination of scientific knowledge,
{{dialogue between society ,NGO’s scientists, policy-makers and society,
the promotion and establishment of truly pluralistic
national bioethics committees and review boards at appropriate levels, }}
the
need for public consultations,
the
regulation of transnational practices
Promotion and Implementation
Bioethics
education, training and information
a) In order
to promote the principles set out in this Declaration and to achieve a better
understanding of the ethical implications of scientific and technological
developments, States should endeavour to foster all forms of bioethics
education and training at all levels as well as to encourage information and
knowledge dissemination programmes about bioethics. These measures should aim
at specific audiences, in particular researchers, members of ethics committees and {{all stakeholders and the public at large. }}
{{a2) bioethics education should include the views of marginalized
groups in regards to all bioethics issues
a3) bioethicists and their students should learn about the views and
situation of marginalized groups in order to be better able to ascertain the
impact of bioethics issues on marginalized groups}}
b) States should
encourage the participation of international and regional intergovernmental
organizations and international, regional and national non-governmental
organizations in this endeavour.
Solidarity and
International Cooperation
a) States should
respect and promote solidarity towards individuals, families, populations and
groups, with special regard for those rendered vulnerable by health or other
personal, societal or environmental conditions and those with the most limited
resources.
b) States should
foster the international dissemination of scientific information and make every
effort to guarantee the free flow and sharing of scientific and technological
knowledge [namely throughout the creation of research and education structures
in the developing countries as well as the transfer of technology].
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c) In the
framework of international cooperation, States should promote cultural and
scientific cooperation, endeavouring to enter into bilateral and multilateral
agreements enabling developing countries to build up their capacity to participate
in generating and sharing scientific knowledge and of the related know-how.
Role of States
States should take
all appropriate measures, whether of a legislative, administrative or other
character, to give effect to the principles set out in this Declaration, in
accordance with international human rights law. Such measures should be
supported by action in the sphere of education, training and public
information.
Roles of the
International Bioethics Committee (IBC) and the Intergovernmental Bioethics
Committee (IGBC)
a) The
International Bioethics Committee (IBC) and the Intergovernmental Bioethics
Committee (IGBC) shall contribute to the implementation of this Declaration and
the dissemination of the principles set out therein. On a collaborative basis,
the two Committees should be responsible for its monitoring and for the
evaluation of its implementation, in particular on the basis of reports
provided by States. The two Committees should be responsible in particular for
the formulation of any opinion or proposal likely to further the effectiveness
of this Declaration. They should make recommendations in accordance with
UNESCO’s statutory procedures, addressed to the General Conference.
b) Reports
provided by States {{and other stakeholders}} will
be addressed every two years to the International Bioethics Committee, which,
after having examined them, will give its advice following the statutory
procedures of UNESCO. After having examined the advice of IBC and the reports
provided by States, the Intergovernmental Bioethics Committee will submit its
opinion to the Director-General for transmission, together with the advice and
recommendations of IBC, to the
Follow-up
action by UNESCO
a) UNESCO
shall take appropriate action to follow up this Declaration so as to foster
progress of the life sciences and their applications through technologies,
based on respect for human dignity and the exercise and observance of human
rights and fundamental freedoms.
b) UNESCO
shall reaffirm its commitment to dealing with all aspects of the biosphere and,
if necessary, shall elaborate guidelines and international instruments, as
appropriate, on ethical principles related to the environment and other living
organisms.
c) Five year
after its adoption [and thereafter on a periodical
basis], UNESCO shall take
appropriate measures to examine the Declaration in the light of scientific and
technological development and, if necessary, to ensure its revision, in accordance
with UNESCO’s statutory procedures.
Denial of acts
contrary to human rights, fundamental freedoms and human dignity
Nothing in this
Declaration may be interpreted as implying for any States, group or person any
claim to engage in any activity or to perform any act contrary to human rights,
fundamental freedoms and human dignity, including, in particular, the
principles set out in this Declaration.
[1] Disabled
Peoples’ International http://www.dpi.org 748 Broadway
R3G 0X3 Telephone: (204) 287-8010 Fax: (204)783-6270 Email: info@dpi.org
[2] For our other cvontributions so far see http://www.bioethicsanddisability.org/universalnorms2004.html and
[3] http://www.un.org/esa/socdev/enable/rights/ahcwg.htm and for the latest Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities http://www.un.org/esa/socdev/enable/rights/ahcwgreportax1.htm
[4] see paragraph 25, 42 in http://www.unesco.org/science/wcs/eng/declaration_e.htm and paragraph 79, 81 and 91 in http://www.unesco.org/science/wcs/eng/framework.htm