Universal Declaration on the Human Genome and Human Rights

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.

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.

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.

The International Bioethics Committee (IBC) 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. It provides the only global forum for reflection in bioethics.

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.

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 has raised serious concerns within the scientific community itself since its discovery.

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.

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.

Interventions on the human genome should be admitted only for preventive, diagnostic or therapeutic reasons and without enacting modifications for descendants.

In 2015, the IBC called for “a moratorium on genome editing of the human germline.”