While the US Congress mulls over a trio of bills designed to regulate research into human cloning, a world body is crafting a document that attempts to preserve both human dignity and avenues of research.
The United Nations Educational, Scientific, and Cultural Organizations finished work on a draft Universal Declaration on the Human Genome and Human Rights over the weekend, after four days of presentations and discussions in Paris by 53 government experts, including representatives from ministries of science and ethics around the world.
Eric Meslin, program director of bioethics research for the Ethical, Legal, and Societal Implications program at the National Genome Research Institute at the US National Institutes of Health, said the sessions focused on a range of minute changes to the draft.
For example, one passage declaring the human genome is a "common heritage of humanity. It underlies the fundamental unity of all members of the human family, as well as the recognition of the inherent dignity of each of its members" was amended to add the principle of genetic diversity: "The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of an inherent dignity and diversity. In essence, it is the heritage of humanity."
"The interpretation of the original draft was worrisome to various members. This meeting gave everyone a chance to change the language to something that was more acceptable," said Meslin, who attended as the official US observer. The United States is not a member of UNESCO. Nonetheless, Meslin is preparing an analysis of the declaration's revision for the US State Department, which will examine the paper and offer a position.
The declaration aspires to be a cornerstone for future UN conventions on the treatment of societies and individuals in an age where scientific research is mining information that will be useful in treating disease and at the same time breaking down human beings into a series of genetic components. It draws upon the principles set down in the 1948 Universal Declaration of Human Rights, which became the basis for UN conventions in the 1960s on civil, economic, and cultural rights. In addition, the declaration refers to earlier conventions on intellectual property and biological diversity.
In defining the human genome as the heritage of humanity, the declaration attempts to protect human dignity by stating that rights cannot be violated on the basis of a person's genetic characteristics. At the same time, the document spells out the role of research - namely, to relieve suffering and improve the well-being of individuals.
With UNESCO approval, the draft declaration now moves on to the member governments for comment, which will be incorporated into the document in time for UNESCO's next meeting in November.
