Paris, November 11 - UNESCO today adopted a Universal Declaration on the Human Genome and Human Rights, the first international text on the ethics of genetic research.
The Declaration sets universal ethical standards on human genetic research and practices which balance the freedom of scientists to pursue their work in the field with the need to safeguard human rights and protect humanity from potential abuses.
The text, which was finalised last July by a committee of governmental experts after four years of elaboration by the International Bioethics Committee of UNESCO (IBC), was adopted unanimously by the General Conference (October 21 - November 12), which brought together representatives of UNESCO's 186 Member States.
In recent years, scientists have discovered the means to intervene in what had once been thought to be untouchable : the genetic heritage of individuals. From in vitro fertilisation, which changed the rules of procreation, to the production of the sheep Dolly by cloning an adult cell, the latest scientific advances have upset the barriers and sent tremors through public opinion, and even scientists themselves. From these ethical concerns arose the need to examine what universal principles should exist in this area as well as the historic importance of the text adopted by UNESCO.
The Universal Declaration comprises 25 articles in seven sections. The preamble places its principles within the framework of the intellectual and ethical mission of UNESCO and the international instruments already adopted by the United Nations on human rights. It also recalls the international instruments in other domains: intellectual property (particularly concerning the patenting the results of research on the human genome), biological diversity and the elimination of racism and other forms of discrimination.
In its principal articles, the Declaration establishes limits on intervention in the genetic heritage of humanity and in individuals that the international community has a moral obligation not to transgress. Threebasic principles are at the heart of the Declaration: that the human genome is part of heritage of humanity; respect for the dignity and human rights of every individual, regardless of his/her genetic characteristics; and the rejection of genetic determinism in recognising that the genome, being subject to mutations through evolution, contains "potentialities that are expressed differently according to each individual's natural and social environment."
The Declaration details the rights of individuals : prior consent to all research, treatment or diagnosis; protection against any discrimination based on individual genetic characteristics; confidentiality of genetic information associated with an identifiable person; and the right to "just reparation" for damage sustained as a direct result of intervention affecting an individual's genome.
The primacy given to the human person must not, however, work to the detriment of scientific creation. During the debates in the General Conference, numerous representatives of Member States insisted that ethics must not be placed in opposition to science. Such a "balanced approach" between ethical concerns and the needs of scientific research is achieved by the Declaration, IBC President No‘lle Lenoir emphasised. After affirming that the individuals, their rights and freedoms, must be of primary concern, the Declaration states that freedom of scientific thought and creativity is an essential freedom that must be protected, she said.
The freedom of research, while affirmed in Article 12 as "being necessary to progress of knowledge" and "part of the freedom of thought," is placed in a framework that establishes essential protections: "No research concerning the human genome nor its applications should prevail over the respect for human rights, fundamental freedoms and human dignity of individuals or, where applicable, of groups of people," states Article 10, while Article 11 proscribes "practices contrary to human dignity," such as reproductive cloning of human beings. The Declaration also states that advances in biology, genetics and medicine concerning the human genome "shall be made available to all."
The responsibility of researchers, but also of public and private sector decision-makers in the setting of scientific policy is emphasised, as well as the role of States in establishing frameworks for the free exercise of scientific activities.
Solidarity and international co-operation are addressed in three articles (17 to 19) asserting the necessity of safeguarding the interests of individuals, families and population groups which are particularly vulnerable to or affected by disease or disability of a genetic character " enouraging international co-operation with regard to the dissemination of scientific knowledge regarding the genome and genetic research; promoting scientific and cultural co-operation; and enhancing the research capacities of developing nations.
The putting into practice of the Declaration is primarily the responsibility of States. To this effect, an ad hoc working group composed of representatives of UNESCO's Member States, selected for geographical balance, will be formed in order to advise the Director-General on the constitution of the IBC and its duties concerning the follow-up to the Declaration.
The IBC, which brought together eminent personalities from science, law, philosophy and economics, consulted more than 100 international organisations, non-governmental oganisations, national ethics committees, universities, research centres in elaborating the text. The IBC revised the text nine times before it was presented in July to the committee of 81 governmental experts who prepared the version submitted to the General Conference.
Daniel Janicot, Assistant Director-General of UNESCO for the Directorate, tressed the Declaration's political significance : "By this act with universal impact, the Organisation reasserts the ethical role it should play concerning scientific advances. At the same time, it consolidates its position as the moral conscience of the United Nations system and reclaims its great normative tradition, its tradition for the elaboration of declarations and conventions."
UNESCO Director-General Federico Mayor asserted to the General Conference the importance of the unanimity achieved with the Declaration's adoption. "This new emphasis placed on [ethical] responsibilities has transformed itself into unanimous support for the Universal Declaration on the Human Genome and Human Rights, saluted as an exemplary contribution of UNESCO."
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