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World Association of Children's Friends (AMADE)




AMADE / UNESCO International Symposium
Bioethics and the Rights of the Child
MONACO, Centre de Rencontres Internationales

◆Sat, 6 May 2000

モナコ宣言

バイオエシックスを考える学生の会会員の皆さま、
ならびに、関係者の皆さま

前略
いつもお世話になっております、学生の会の河原です。
以前、このMLでもお知らせ致しました、
AMADE (World Association of Children's Friends) の
「バイオエシックスと子どもの権利」についての国際シンポジウムに
関しての情報ですが、私のところに今週、以下のような声明 (モナコ宣言) が送信されて
まいりましたので、ここにお知らせいたします (多数のため、Bccにて配信させて頂きます)。
これは、先月28日から30日にかけて開催された同シンポジウムを受けて採択されたもので、(1) 生命の初期の段階にある胎児や、不妊症のカップルの体外受精から生まれる胎児、また、障害をもつ子どもの尊厳に関する声明。(2) 子どもの自律性と彼らの親権者との関係に関する声明。 (それぞれの利益はあれども、原則として、子どもにとってのbest interestが大人にとっての最善の利益にまさるべきであるという旨の声明も為されております)、
(3) 子どもの自律性の成長の程度に応じて為されるインフォームド・コンセントに関する声明、さらに、予防や治療に関して、障害をもつ子どもたちに恩恵を与えるために、科学は適用されるべきであり、けして、そうした子どもたちを排除したり、おきざりにしたりするために科学は発展すべきではないといった旨の声明等、から構成されております。
(その他にも示唆に富む多くの論点が述べられております。比較的短いものなので、詳細は、以下原文をご参照下さい)
このモナコ宣言から、弱い存在ではあるけれども、その自律性を誤認するべきではない子どもたちの権利の問題、さらには、その背景として、高度に発展し続ける科学 (生物医科学を含む) と人権擁護の根本的なあり方が改めて問いかけられている気が致します。

ご関心がおありの方は、どうぞご一読なさって下されば幸いです。草々

以下___
INTERNATIONAL SYMPOSIUM
"BIOETHICS AND THE RIGHTS OF THE CHILD"
Monaco, 28-30 April 2000
***
 You will find hereafter the text of the "Declaration of Monaco"
following the Symposium "Bioethics and the Rights of the Child", held in
Monaco, from 28 to 30 April 2000.
 For AMADE, (World Association of Children's Friends), it is a warning
to the scientific world : "Caution, Child !". Science has to serve the
child, and not the child to serve science.
 This Declaration is not the full stop of one more Symposium. It has to
be the first step of a new human adventure.
Jacques DANOIS

General Secretary
AMADE MONDIALE
------------------------------------------------------------------------
INTERNATIONAL SYMPOSIUM
"BIOETHICS AND THE RIGHTS OF THE CHILD"
Monaco, 28-30 April 2000
*
MONACO STATEMENT :
CONSIDERATIONS ON BIOETHICS
AND THE RIGHTS OF THE CHILD

The International Symposium on Bioethics and the Rights of the Child,
jointly organized by the World Association of Children's Friends (AMADE)
and UNESCO, was held in Monaco from 28 to 30 April 2000. It presents
hereafter a number of considerations regarding this progress in biology
and medicine with a view to reinforcing and implementing the protection
of children's rights.

It acknowledged the issue of childhood as a complex, evolving reality,
which now merits specific consideration. Children are fragile beings.
However, their autonomy should not be misconceived. Therefore, their
rights -particularly their survival, development and participation- and
the protection they need are effectively reflected in numerous national
and international texts aimed at protecting human rights, to which
specific provisions are added regarding children, inter alia the United
Nations Convention on the Rights of the child. These observations
acquire their fullest dimensions in the light of recent progress in
biology and medicine and of new cultural developments concerning the
early stages of life.

I - The origins of the child
. Every child is a unique, new being.

. The dignity of the embryo produced in vitro in cases of a couple's
infertility or to prevent the transmission of particularly serious
conditions, and then of the human foetus, should be respected.

. The uses of genetic and foetal medicine data should respect the
principle of non-discrimination and should not aim at the reduction or
elimination of human diversity, nor at that of the element of chance
intrinsic to life.

. A child's disability, whatever the degree, should never be considered
as a liability.

II - The ties of the child
. Measures that are taken to ensure the protection of children should be
suited to the latter's degree of autonomy.

. Taking into account the child's interest, parents or those exercising
parental responsibility should decide on the extent of information to be
imparted to the child in regard to the circumstances of his/her birth
whenever these circumstances have involved medically assisted
reproduction.

. The care and education offered in the context of a family, whose
members have responsibilities towards the child, are the most beneficial
to the child, and should therefore be sought in every circumstance.

. The child should be involved in decisions pertaining to his/her
health, as well as education, and this to a greater and finer degree as
his/her autonomy is progressively asserted. Both parents should abide by
that requirement.

. When interests differ, the child's best interest should, in principle,
prevail over that of the adult.

III - The body of the child
. The care of a child's health should include due consideration for
his/her information, consent and, as the case may be, refusal of
consent, according to his/her growing degree of autonomy.

. This principle should be particularly enforced with regard to tests
and/or organ removals which may be performed upon the child and may aim
solely at an imperative health interest that cannot be met otherwise.
Under no circumstances should the sole interest of society prevail over
that of the child.

. Protection must be reinforced if the child is disabled. Scientific
progress and their applications, particularly concerning prevention and
treatments, should benefit disabled children and never lead to their
exclusion or marginalization.

. Society should in particular foster research endeavours pertaining to
rare diseases and the development of efficient therapies.

The Symposium believes that these considerations will enhance the
respect of the dignity and the protection of the rights of the child.
***
___以上

 

◆28-30 April 2000
Information for participants and observers

Co-organised by the World Association of Children's
Friends (AMADE) and UNESCO, the International Symposium
on Bioethics and the Rights of the Children will take
place in MONACO from 28 to 30 April 2000 in the Centre
de Rencontres Internationales, 12 avenue diOstende n
Phone
(+377) 93 10 86 00, Fax (+377) 93 10 86 86.

All correspondence concerning this symposium should be addressed to :
AMADE
16 boulevard de Suisse
MC n 98030 MONACO Cedex
Phone : (+377) 97 70 52 60
Fax : (+377) 97 70 52 72
E-mail : amade@monte-carlo.mc

*Reception and registration of participants and observers
Reception and registration of participants and
observers will take place at the Centre de Rencontres
Internationales on Thursday 27 April from 3 p.m. to 6
p.m. and on Friday 28 April from 8.30 a.m. to 9.30 a.m.
The welcome desk will also be open during the work
sessions.
On registering, participants and observers will receive
documents concerning the Symposium and their stay in
Monaco, and a badge which they are kindly asked to wear
throughout the Symposium so as to identify themselves
and facilitate contacts with other participants and the
Symposium organisers.
* Opening session
The Opening Ceremony will take place in the Ponant room
of the Centre de Rencontres Internationales on Friday
28 April 2000, at 9.30 a.m.
Participants and observers are requested to be seated
in the room by 9.15 a.m. at the latest.
* Session timetable
Friday 28 April 2000
Morning : 11 a.m. to 1 p.m.
Afternoon : 3 p.m. to 6 p.m.
Saturday 29 April 2000
Morning : 10 a.m. to 1 p.m.
Afternoon : 3 p.m. to 6 p.m.
Sunday 30 April 2000
Morning : 9.30 a.m. to 11.45 a.m.
Closing session :12 noon to 1 p.m.
A draft programme for the Symposium is included with this information bulletin.
* Official Languages
The official languages of the Symposium are English and
French. Simultaneous interpretation will be provided in
these two languages.
* Facilities available on site
Fax machines and telephones will be available for use
by participants and observers. A charge will be made
for use.
Restaurants, banks, travel agencies and other services
are available close to the Centre de Rencontres
Internationales.
* Travelling to Monte-Carlo
By air
Participants arriving by air can choose between several
types of transport for their journey between Terminals
1 and 2 in Nice Cote-diAzur Airport and the
Principality of Monaco : helicopters (Heli-Air Monaco,
phone : +377 97 70 80 20 : Fax : +377 97 70 80 21);
taxis (average fare : FRF 400 per journey); or direct
shuttle bus (every hour n fare : FRF 90 per person).
Banking facilities and automatic cash machines are also
available at the airport.
By train
All international trains call at Monaco-Monte-Carlo
rail station (information by phone on 08 36 35 35 35)
which is linked to the European rail network.
By road
By motorway, from Italy via the iMonaco-RoquebruneGexit
. From France, exit 56 iMonacoi. For a more attractive
and touristic route take one of the three cliff roads,
the iBasse Cornichei, iMoyenne Cornichei or iGrande
Cornichei.
* Accommodation
Preferential rates are available for participants and
observers during their stay in Monaco for the
Symposium. For information on accommodation and room
reservation, contact :

Direction du Tourisme et des Congres
Mme. Marie-Ange BILOTTI
Phone : (+377) 92 16 60 16
Fax : (+377) 92 16 60 00
e-mail : mbilotti@gouv.mc

A hotel reservation form is enclosed with this
information bulletin. It should be returned to the
Direction du Tourisme et des Congres before Tuesday 28
March 2000.
* Currency / Exchange / Credit Cards
The official currency of the Principality of Monaco is
the French Franc; there are also coins of equivalent
value bearing the effigy of the Sovereign Family.
Several foreign exchange offices are open every day,
including Sundays and holidays.
Automatic cash dispensers are also available in the
Principality 24 hours a day; for information on their
location enquire at your hotel.
All leading credit cards can be used. Foreign currency
is accepted by certain shops in the Principality.
* Banks / Travellersi Cheques
Banks are open Mondays to Fridays, generally from 9
a.m. to 12 noon and 2.30 p.m. to 4.30 p.m., except on
afternoons preceding public holidays.
Leading TravellersCCheques are accepted in the Principality.
* Climate
In April the climate in Monaco is mild (13-15 C, 55-59
F). However, warm waterproof clothing may be necessary.

Evening dress will not be required for receptions.

Presentation
Today many an application of the formidable scientific
progress has significant implications for humanity.
They are nonetheless fraught with fundamental ethical
interrogations. Indeed, whilst each and every member of
society, and particularly the most vulnerable,
children, should benefit from this progress, they may
also be exposed to its potential dangers.

Children are vulnerable, fragile beings, as their
physical and mental welfare and the full development of
their personalities depend to a large extent on their
parents, on the adults in their immediate environment
and on society as a whole. Children's rights - indeed
as the rights of every person - are enshrined in the
Universal Declaration of Human Rights (10 December
1948) and in the two International Covenants on
Economic, Social and Cultural Rights and on Civil and
Political Rights (16 December 1966). In particular, the
United Nations Convention on the Rights of the Child
(20 November 1989) provides for special protection. The
ethical aspects of scientific progress are highlighted
in two recent texts: the Universal Declaration on the
Human Genome and Human Rights (adopted by the General
Conference of UNESCO on 11 November 1997), and, at the
regional level, the European Convention on Human Rights
and Biomedicine (signed on 4 April 1997).

Technologies developed to treat infertility, such as
medical assistance to human reproduction, and genetics
applications designed to prevent certain genetic
conditions are at a risk of being diverted from their
aims, in order to serve quite different purposes such
as eugenic selection. Certain prenatal tests, which are
meant to detect genetic mutations, can be applied, for
instance, to select foetuses based on gender selection.
Pre-implantation
diagnoses could lend themselves to further drifts. The
same could be said for techniques that have not yet
been mastered, such as the cloning of embryos or, in a
more distant future, the cloning of adult somatic
cells.

The difficulties that these issues present to ethical
reflection must not be denied. They directly entail
religious or spiritual convictions and are often at the
core of diverse cultural traditions. From one country
to another, from one community to another, the answers
to these questions come laden with subtle nuances as
well as significant contrasts.

In addition, tensions may exist between two sets of
rights, such as the rights of adults, who are parents,
and those of their children, jeopardizing the effective
exercise of various civil rights. By virtue of Article
23 of the International Covenant on Civil and Political
Rights adults can invoke the right to found a family
and demand access to new reproductive technologies.
Similarly, the separation of a couple who has resorted
to in vitro fertilisation
to have a child and later (when admissible by law)
files in a suit of denying parenthood to that child,
puts at stake the right of every child to have a name
or a nationality, as per Article 24 of the same
Covenant. Courts have to deal with dramatic cases of
surrogate motherhood, whereby children seek to identify
their biological mother, or in cases of parents who
request parental identification procedures, notably
after a recourse to in vitro fertilization with sperm
and/or egg donor. Shouldn't the rights of the child
prevail over those of adults? Shouldn't the interest of
the child take precedence over the will or interests of
the family? Does the desire to have a child legitimize
all practices? Must biological parenthood be preferred
at all cost to sociological parenthood (for instance,
through adoption)? In short, how best can the rights of
the child, the rights of the family and the freedom of
women be balanced, whilst preventing the desire to have
a child from reducing the child to an object?

On another hand, medical research is bound to devise
experimentation on children who suffer from specific
diseases in order to develop treatments targeting
diseases that specifically affect children. Perhaps
this, more than any other, is a question that warrants
rigorous study. Such is the need to pay close attention
to biomedical research - an indispensable condition of
progress - if the rights of the child are to be
protected.

It should be added that many children in the world are
waiting for organ transplants and, for reasons of
biological compatibility, the organs they need must be
taken from children. Are the questions surrounding the
removal of organs from children straightforward? Do all
such cases meet the conditions set forth to ensure that
the rights of the child are protected?

Far from exhaustive, these various interrogations shall
provide the framework of the International Symposium on
Bioethics and the Rights of the Child. The symposium
will further underscore such issues as anonymity, and
the consent that is given by the child, or in his or
her name.

A "Declaration" will be adopted at the closing of the
Symposium. It should stress the prevalence of the
rights of the child over those of adults, it should
underscore the unshakeable singularity of each child,
and it should contribute to paving the way to renewed
thinking on all these issues. In so doing, this
Declaration will be timely.

The papers presented at the Symposium shall be published by UNESCO.

Provisional Programme
Friday 28 April 2000
9:30 a.m. - 10:30 a.m.

* Opening Ceremony *
Addresses by
Her Royal Highness the Princess of Hanover, President of AMADE
Lecture of a message from the Director-General of UNESCO
Mrs Jaroslava MOSEROVA, Chairperson of the General Conference of UNESCO,
Chairperson of the Czech National Commission for UNESCO, Senator
Mr Jean PASTORELLI, Minister Plenipotentiary, Permanent
Delegate of Monaco to UNESCO
Mr Jean MICHAUD, Officer in charge of the Symposium on behalf of the AMADE

Presentations to the audience will be made by
Mr Jacques DANOIS, Secretary-General of AMADE

11:00 a.m. - 1:00 p.m.
* Session I - The origins of the child *
Chaired by Mrs Graciela MEGLIOLI DE BORNAND (Argentina),
Director of the Gregorio Mendel Genetic Laboratory,
Chairperson of the AMADE-ARGENTINA

Reproduction and new technologies : state-of-the-art
by Mr Israel NISAND, Professor of Obstetrics and
Gynaecology, Strasbourg (France)
Progress in embryology and in diagnosis
by Mrs Evelyne SHUSTER, Director of the Human Rights
and Ethics Programme, University of Pennsylvania Health
System (United States of America)
Dangers and drifts
by H. E. Mr Najib ZEROUALI OUARITI, Minister of Higher
Education, Executive Training and Scientific Research
(Morocco), Chairperson of the Inter-governmental
Bioethics Committee of UNESCO (IGBC)

3:00 p.m. - 6:00 p.m.
Discussion
Saturday 29 April 2000
10:00 a.m. - 1:00 p.m.

* Session II - The ties of the child *
Chaired by Justice Keba M'BAYE (Senegal),
former Vice-Chairperson of the International Court of Justice (The Hague)

Impact on the structure of the family
by Mrs Simone BATEMAN NOVAES, Research Director at the
National Scientific Research Council (CNRS) (France)
General legal dimensions of the issue
by Judge Jean-Louis BAUDOUIN, Professor of comparative
law, Judge at the Appeals Court of Quebec (Canada)
Parental identification and genetic finger-printing
by Mrs Judit SANDOR, Professor of law at the Central
European University (Hungary)
Impact in terms of public health
by Mr Daniel SERRAO, Professor of pathology and
bioethics at the Faculty of Medicine, Porto (Portugal)

Discussion
3:00 p.m. - 6:00 p.m.

* Session III - The body of the child *
Chaired by Mr Ryuichi IDA (Japan), Professor of
international law, Kyoto University, Chairperson of the
International Bioethics Committee of UNESCO (IBC)

Experimentation on children: state-of-the-art
by Mr Eric MESLIN, Executive Director of the National
Bioethics Advisory Commission (United States of
America)
Issues concerning the consent of children and minors
by Mr Bart WIJNBERG, Chief of the Division of Medical
Ethics of the Ministry of Health, Welfare and Sport
(Netherlands)
Dialogue between parents and medical institutions
by Mr Octavi QUINTANA TRIAS, Deputy Director of INSALUD (Spain)
State of legislation throughout the world
by Mr Vitit MUNTARBHORN, Professor of law at
Chulalongkorn University (Thailand)

Discussion
Sunday 30 April 2000
10:00 a.m. - 11:45 a.m.

* Session IV - Presentation to the participants and
adoption of the Declaration *
Chaired by H. E. Mr Jacques BOISSON (Monaco), Ambassador,
Permanent Representative of Monaco to the United Nations
12:00 a.m. - 1:00 p.m.

* Closing Session *
Chaired by His Royal Highness the Hereditary Prince Albert

Reading of the Declaration by one or several children/young people

Addresses by

His Royal Highness the Hereditary Prince Albert, Honorary President of AMADE
Mr Georges KUTUKDJIAN, Secretary-General of the
International Bioethics Committee of UNESCO (IBC),
Officer in charge of the Symposium on behalf of UNESCO
H. E. Mrs Vigdis FINNBOGADOTIR, President of the
Republic of Iceland (1980 - 1996), Chairperson of the
World Commission on the Ethics of Scientific Knowledge
and Technology (COMEST) (subject to confirmation)
Mr Jacques DANOIS, Secretary-General of AMADE

Hotel reservation form
To reserve your hotel accommodation, please complete
this form in BLOCK CAPITALS , and return it to :
Marie-Ange Bilotti, Monaco Tourist Bureau Tel number :
+ 377 92 16 60 16, Fax number : + 377 92 16 60 00
Please return this form before TUESDAY 28th MARCH 2000.
REGISTERED HOTEL
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3 stars hotels :
HOTEL DU LOUVRE SINGLE 621FF (street view) 711FF (sea view)
DOUBLE 702 FF(street view) 792FF (sea view) (70FF BREAKFAST)
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HOTEL ALEXANDRA SINGLE 570FF DOUBLE 700FF (BREAKFAST INCLUDED)
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HOTEL TULIP INN MONACO TERMINUS SINGLE 510FF DOUBLE 710FF (BREAKFAST INCLUDED)
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HOTEL BALMORAL SINGLE 450FF DOUBLE 600FF (90FF BREAKFAST) NUMBER OF NIGHTS :
2 stars hotel :
HOTEL DE France SINGLE 390FF DOUBLE 450FF (BREAKFAST INCLUDED)
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VERY IMPORTANT, CONFIRM YOUR RESERVATION BEFORE TUESDAY 28TH MARCH 2000.
In order to guarantee your room reservation and your
incidental accounts, please fill in :

CREDIT CARD : VISA___MASTER CARD___AMERICAN EXPRESS

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