The Universal Declaration on the Human Genome and Human Rights was adopted unanimously and by acclamation at UNESCO's 29th General Conference on 11 November 1997. The following year, the United Nations General Assembly endorsed the Declaration.
Evaluation of the Declaration
The Declaration has been cited in many academic and popular journals and has been referred to in numerous national and regional legislation on medicine, privacy and genetic research. UNESCO is currently evaluating the impact of the Declaration worldwide, in accordance with the Guidelines for the Implementation of the Declaration (1999), which the General Conference endorsed at its 30th session. These Guidelines outline the action that different groups must take if the Declaration is to be implemented, and provides guidance as to how these tasks can be achieved.
History of the Declaration
At its 27th session, by its Resolution 27 C/5.15 (15 November 1993) the General Conference of UNESCO asked the Director-General to prepare an international instrument for the protection of the human genome. The IBC, having been entrusted by the Director-General with the preparatory work for this task, created a Legal Commission, chaired by Mr Héctor Gros Espiell to consider the form and content of the instrument.
A first outline, examined by the IBC at its 2nd session, led to the preparation of an Outline of the declaration (7 March 1995) based on universally acknowledged rights and freedoms. The General Conference examined a Report on this subject at its 28th session. On 14 November 1995, it asked the Director-General to draw up a preliminary draft declaration and to create and convene a committee of governmental experts to finalize this declaration (Resolution 28 C/2.2).
This Committee met at UNESCO Headquarters from 22 to 25 July 1997. Based on the deliberations and work of the IBC between 1993 and 1997, the Committee drafted the text of the Draft of a Universal Declaration on the Human Genome and Human Rights (25 July 1997), which was presented to the General Conference three months later.
The 29th Session of the General Conference adopted the Universal Declaration on the Human Genome and Human Rights, unanimously and by acclamation, on 11 November 1997. By Resolution 29 C/I7 entitled ‘Implementation of the Universal Declaration on the Human Genome and Human Rights’, the General Conference laid out the methods for the follow-up of the implementation of the Declaration.
Aware of the significance and scope of this Declaration, the United Nations General Assembly endorsed the Declaration by its Resolution AIRES/53/152 on 9 December 1998 at its 53rd session.
See also our video series on Ethics of Genome Editing
Q&A on the human genome
What is the human genome?
The human genome is the complete set of genetic material of the human being. As such, it underlies the fundamental unity of all members of the human family. By its nature, the human genome evolves and is subject to mutations. It contains potentialities that are expressed differently according to each individual’s natural and social environment, including the individual’s state of health, living conditions, nutrition and education. In a symbolic sense, it is the heritage of humanity.
What is germline editing?
Germline modification, also called germline editing, makes it possible to modify human eggs, sperm and embryos. This technique could improve gene therapy for people with genetic diseases. This would allow couples undergoing IVF to correct faulty genes in embryos before they are implanted. The technique could also be used to “edit” traits that people inherit, such as hair and eye colour, raising concerns about scientists creating so called “designer babies” in the future. Scientists have called for a public debate about the ethical implications of germline modification.
Why does UNESCO care about the human genome?
UNESCO regards the human genome as the “heritage of humanity”. UNESCO believes it should be protected and passed on to future generations and that advances in science need to be considered in the light of human rights.
What is the International Bioethics Committee (IBC)?
The International Bioethics Committee was created in 1993.
The IBC is a body of 36 independent experts that follows progress in the life sciences and its applications in order to ensure respect for human dignity and freedom.
Why is the IBC looking at genetic advances such as genome editing?
A number of new techniques have emerged with the potential to dramatically change the possibility of intervening on human genetic material, including genome editing. These advances raise important questions about ethics, morality and the impact of scientific advances on the rights of individuals.
Why is genome editing so important?
A new technique of genome editing using a bacterial system, called CRISPR-Cas9, has recently been introduced offering the possibility of inserting, removing and correcting DNA with relative simplicity and efficiency, unrivalled so far. This is often called genetic “editing.”
The application of this technology to the germline raised serious concerns within the scientific community itself since its discovery.
What ethical challenges does genome editing raise?
Gene therapy could be a watershed in the history of medicine and genome editing is unquestionably one of the most promising undertakings of science for the sake of all humankind.
While gene therapy cannot provide the quick fix for the vast majority of diseases, which depend on many genes as well as environmental factors and lifestyles, it can be used to tackle diseases caused by the abnormality of a single gene.
What is the Committee’s biggest concern about genome editing?
This development seems to require particular precautions and raises serious concerns, especially if the editing of the human genome should be applied to the germline and therefore introduce heritable modifications, which would be transmitted to future generations.
What is the Committee’s recommendation on work on the human genome?
Interventions on the human genome should be admitted only for preventive, diagnostic or therapeutic reasons and without enacting modifications for descendants.
The IBC calls for “a moratorium on genome editing of the human germline.”