INTERNATIONAL BIOETHICS COMMITTEE HOLD SEVENTH SESSION IN QUITO
Quito (Ecuador), November 13 (No.2000-115)- The major issues raised by
advances in biomedicine and genetics were examined by some 150
participants - members of UNESCO's International Bioethics Committee
(IBC), as well as representatives of United Nations' organisations,
intergovernmental and non-governmental organisations and members of
national bioethics committees - during the Seventh Session of the IBC,
which took place in Quito from November 7 to 9.
During the session, the IBC proposed that an international
mechanism - or fund - be created, financed from a proportion of the
profits of private and public companies earned from human genome data to
permit the financing of research, education and training, dissemination
of knowledge and information, support for vulnerable groups and the
promotion of bioethics.
The IBC proposal is the main recommendation of a report on
solidarity and international co-operation between developed and
developing countries concerning the human genome. The report, prepared
by a working group headed by the Jordanian Mohammad Hamdan, Director of
the Arab Open University (Saudi Arabia), and presented to the IBC on
November 9 by Mehmet Öztürk, Head of the Molecular Biology and Genetics
Department of the University of Bilkent (Turkey), opens new vistas on
possible avenues of co-operation, between developed and developing
countries, as well as regional and South-South co-operation.
To develop solidarity and international co-operation in the
specific context of the human genome, the working group proposed action
at five levels to encourage, support and promote: free access to
knowledge and scientific information; access to scientific knowledge and
information through training of researchers and experts in the field of
human genetics; research in human genetics; implementation of research
and educational structures; evaluation of risks and benefits of human
genome research.
Another report, on the use of embryonic stem cells in
therapeutic research, was the subject of a lively debate in Quito.
Presented by British law professor Alexander McCall Smith and molecular
genetics professor Michel Revel (Israel), the report concerns a very
topical issue as numerous researchers wish to work on stem cells which
hold the promise of considerable progress in the treatment of diseases
which are presently difficult or impossible to cure.
The subject is also highly controversial. Considering the fact
that embryonic stem cells (cells which have the ability to develop into
more than one form of human tissue) present the best potential for
development (adult stem cells, present in the human body, do not have
the same potential), an ethical question arises: Is it acceptable to
utilise the human embryo in therapeutic research? Opinions on the issue
are divergent and this could be observed even within the ranks of the
IBC. Considerable progress was nevertheless registered during the debates and the final report will be available in April 2001.
The debate on "The Economic Aspects of Human Genome Research"
chaired by Michael Kirby, Justice of the High Court of Australia, was
another key element in the session. Pascal Brandys, President of Biotech
France, Mexican José Maria Cantú, President of the Latin American Human
Genome Project (PLAGH) and the Chinese Huanming Yang, Director of the
Human Genome Center, Chinese Academy of Medical Sciences and
Secretary-General of the Chinese Human Genome Project.
Representing the point of view of the biotechnological industry,
Mr Brandys declared: "Industry wishes to have an ethical framework for
its work and can also contribute to its development". He said that the
debate on the human genome was distorted by over-simplification and he
distinguished between the sequencing of the human genome on the one
hand, and knowledge of the structure of genes, particularly the
transition from knowledge to application on the other. Reaffirming that
information on the human genome should belong in the public domain, Mr
Brandys admitted that this was not yet the case and said that secrecy
would prevail for several years as those - private and public
corporations - conducting research in this field wish to retain their
advance so as to develop applications which will make their work
profitable.
Mr Cantú and Huanming Yang took a radically different position
and denounced growing inequality. Mr Cantú contended that at a time when
three new genes are discovered every day "it is the private sector which
sets the rules of the game of research" and the products it will yield
will only be available to the populations of the richest countries. He
denounced this "gold rush" and the race for patents. Huanming Yang
defended free access to raw basic data concerning the genome and
denounced monopolisation in this area: "The human genome is in peril. It
may be confiscated by a small number of corporations and individuals. A
war for bio-resources may soon break out", he said.
During the session, the IBC re-elected its Bureau with Ryuichi Ida
(Japan) as Chairperson; Hector Gros Espiell (Uruguay), Mohammad Hamdan
(Jordan), Michèle Jean (Canada) and Jacek Zaremba (Poland) as
Vice-Chairs; Yolande Tano Bouah (Côte d'Ivoire) as Rapporteur.
As in previous meetings, the IBC members also examined the most
recent advances in research. In Quito, after taking stock of research
into ageing, which was introduced as of the first day, two other
specific areas of research were introduced: James Pickel, of the
Laboratory of Molecular Biology of the National Institute of
Neurological Disorders and Stroke, National Institutes of Health, spoke
of the neurological sciences and Leena Peltonen (Finland), Genetics
Professor, discussed the prospects opened up by the completion of the
human genome mapping project.
The Committee also undertook a consultation with patients'
associations about the issues raised by the application of the
principles enshrined in the Universal Declaration on the Human Genome and Human Rights (1997). The consultation, held in keeping
with the provision of article 24 of the Declaration, was the first of
its kind. It enabled the people most concerned by the results and
methods of research in biology and genetics to take the floor.
Representatives of the French patient association Association française
pour les myopathies (AFM), European Parkinsonians (EUROPARK) and
Inclusion International were able to express themselves before the IBC
and to reaffirm, notably, that research must not be an end in itself but
that it must first of all seek to help and cure the sick.
During the closing session - presided by Patricio del Pozo,
Ecuador's Secretary of State for Public Health - Ryuichi Ida, the
Chairperson of the IBC, described the meeting as fruitful and
highlighted the problem of intellectual property which is at the
cross-roads of scientific advances, economic activity and bioethical
principles. The issue will be the subject of an international symposium,
"Intellectual Property and Genomics", which UNESCO is organising in
Paris from January 30 to February 1, 2001.
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