Tynan, Daniel --- "Upcoming Events September to December 2000" [2000] HRightsDef 12; (2000) 9(2) Human Rights Defender

International Symposium
Bioethics and the Rights of the Child

Jacques Danois

• I The origins of the child
• II The ties of the child
• III The body of the child

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CONSIDERATIONS OF BIOETHICS AND THE RIGHTS OF THE CHILD

The International Symposium on Bioethics and the Rights of the Child, held in Monaco from 28 to 30 April 2000, was jointly organised by the World Association of Children's Friends (AMADE) and UNESCO. It presented a number of considerations regarding developments in this area of biology and medicine with a view to reinforcing and implementing the protection of children's rights. These are set out below.

The Symposium acknowledged that the issue of childhood is a complex, evolving reality, which now merits specific consideration. Children are fragile beings. However, their autonomy should not be misconceived. 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. These include the United Nations Convention on the Rights of the Child. These observations acquire their fullest dimensions in the light of recent developments 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 that 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 marginalisation.
• 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.

For AMADE (World Association of Children's Friends), the Monaco Declaration 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 at the end of one more symposium. It has to be the first step of a new human adventure.

Jacques Danois is General Secretary, AMADE Mondiale.