In 1997 UNESCO added a specific statement on the human genome to the Universal Declaration of Human Rights (1948):
“Recognizing that research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and of humankind as a whole, but emphasizing that such research should fully respect human dignity, freedom and human rights, as well as the prohibition of all forms of discrimination based on genetic characteristics.“
Below are some highlights of the principles that follow and adopt this Declaration (a total of 25 articles in 7 chapters).
A. Human dignity and the human genome
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. In a symbolic sense, it is the heritage of humanity.
B. Rights of the persons concerned
a. Research, treatment or diagnosis affecting an individual’s genome shall be undertaken only after rigorous and prior assessment of the potential risks and benefits pertaining thereto and in accordance with any other requirement of national law.
b. In all cases, the prior, free and informed consent of the person concerned shall be obtained. If the latter is not in a position to consent, consent or authorization shall be obtained in the manner prescribed by law, guided by the person’s best interest.
c. The right of each individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.
d. In the case of research, protocols shall, in addition, be submitted for prior review in accordance with relevant national and international research standards or guidelines.
e. If according to the law a person does not have the capacity to consent, research affecting his or her genome may only be carried out for his or her direct health benefit, subject to the authorization and the protective conditions prescribed by law. Research which does not have an expected direct health benefit may only be undertaken by way of exception, with the utmost restraint, exposing the person only to a minimal risk and minimal burden and if the research is intended to contribute to the health benefit of other persons in the same age category or with the same genetic condition, subject to the conditions prescribed by law, and provided such research is compatible with the protection of the individual’s human rights.
Every individual shall have the right, according to international and national law, to just reparation for any damage sustained as a direct and determining result of an intervention affecting his or her genome.
C. Research on the human genome
No research or research applications concerning the human genome, in particular in the fields of biology, genetics and medicine, should prevail over respect for the human rights, fundamental freedoms and human dignity of individuals or, where applicable, of groups of people.
D. Conditions for the exercise of scientific activity
The responsibilities inherent in the activities of researchers, including meticulousness, caution, intellectual honesty and integrity in carrying out their research as well as in the presentation and utilization of their findings, should be the subject of particular attention in the framework of research on the human genome, because of its ethical and social implications. Public and private science policy-makers also have particular responsibilities in this respect.
source, full information:
Universal Declaration on the Human Genome and Human Rights (UNESCO 1997)
XIV LEGISLATURE – BILL AS 11 – on the initiative of Senator PROVERA
Establishment of a Supervisory Authority for Human Genome Research (IT)
Honorable Senators. – The so-called “Genome Project” represents an international research project, initiated in 1986 at the suggestion of Nobel Laureate Dulbecco, which aims to compile and complete the mapping of human genes, of which there are about 100,000. Knowledge of the role of each gene may allow for scenarios unimaginable to current medicine: the gains in terms of prevention and therapeutic capabilities that will result will be enormous.