The UNESCO Trilogy of 1997, 2003 and 2005

In one line

Three declarations in eight years, each answering a question the last one had not been asked, and the shortest of them is the strictest.

In the wording a student can write in an exam: UNESCO's General Conference adopted the Universal Declaration on the Human Genome and Human Rights in 1997, the International Declaration on Human Genetic Data in 2003, and the Universal Declaration on Bioethics and Human Rights in 2005; all three are declarations and not treaties, so none binds; they protect different objects, being respectively the genome, the data, and the person in the whole field of medicine and the life sciences; and their limitation clauses differ, article 9 of the 1997 Declaration being the stricter in requiring compelling reasons where article 27 of the 2005 Declaration requires only that a limitation be by law.

The three, and what each was for

1997: the genome

The occasion. The Human Genome Project was under way and the mapping of the human genome was in prospect. The question nobody had had to answer was what the genome is in law: a substance, an inheritance, a person's property, or something else.

The answer. Article 1 declares that the human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity, and that in a symbolic sense, it is the heritage of humanity. [The Genome and Human Dignity] works it.

What it produced. Twenty-five articles on dignity, non-discrimination, consent, confidentiality, the right not to know, research and its limits, solidarity and implementation. Its article 11 prohibits practices which are contrary to human dignity, such as reproductive cloning of human beings, and its article 24 charges the International Bioethics Committee with identifying such practices, such as germ-line interventions.

2003: the data

The occasion. Sequencing became cheap and biobanks became large, so the question shifted from what the genome is to what may be done with the information derived from it.

The answer. The 2003 Declaration is about a thing that can be copied, linked, moved and stored, which the genome cannot. Its structure follows the life cycle of data: collection, processing, use, storage and destruction.

What it produced. Twenty-seven articles, of which the ones the book uses most are article 8 on prior, free, informed and express consent, article 9 on withdrawal, article 14 on privacy and confidentiality, article 16 on change of purpose, article 18 on circulation across borders, and article 19 on benefit sharing. [Genetic Data: What It Is and Why It Is Special] and the three chapters after it work them.