In 1997 heeft de UNESCO een specifieke verklaring over het menselijk genoom toegevoegd aan de Universele Verklaring van de Rechten van de Mens (1948):
“Erkennende dat het onderzoek naar het menselijk genoom en de daaruit voortvloeiende toepassingen enorme vooruitzichten bieden op vooruitgang bij de verbetering van de gezondheid van individuen en van de mensheid als geheel, maar benadrukkend dat dergelijk onderzoek de menselijke waardigheid, vrijheid en mensenrechten, alsmede het verbod op elke vorm van discriminatie op grond van genetische kenmerken volledig moeten worden geëerbiedigd.”
Hieronder volgen enkele hoogtepunten van de beginselen die deze Verklaring volgen en aannemen (in totaal 25 artikelen in 7 hoofdstukken).
Universele verklaring inzake het Menselijk Genoom en de Mensenrechten (1997) (Generic)
(helaas geen NL vertaling op de UNESCO.nl site…)
A. Human dignity and the human genome
Article 1
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.
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B. Rights of the persons concerned
Article 5
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.
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Article 8
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.
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C. Research on the human genome
Article 10
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.
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D. Conditions for the exercise of scientific activity
Article 13
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.
Bron en complete informatie:
Universal Declaration on the Human Genome and Human Rights (UNESCO 1997) (EN)
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