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International bioethical norms

The International Bioethical Norms call for a ban on the clinical applications of Heritable Genome Editing (HGE).

Public debate and public engagement are needed to further explore the ethical, social, cultural and legal repercussions of Human Germline Genome Editing.

The loopholes will however always exist, even if the spirit and the intention of those Bioethical Norms appear clearly defined:


The 1997 UNESCO Declaration enforced a Moratorium on germline genome editing in its Universal Declaration on the Human Genome and Human Rights.


 And in 2005 UNESCO published Article 16 of the Universal Declaration on Bioethics and Human Rights about Protecting Future Generation:

'The impact of life sciences on future generations, including on their genetic constitution, should be given due regard'.


In 2000 the Charter of Fundamental Rights of the European Union (CFREU) prohibited eugenic practices, which could potentially the field of germline genome editing.


The Oviedo Convention which falls under the Council of Europe’s Convention on Human Rights and Biomedicine ratified the decision in 1997, that germline genome modification may not include genetic insertions which may be passed on to future generations.

Furthermore the Oviedo Convention states in article 11, that "any form of discrimination against a person on grounds of his or her genetic heritage is prohibited".

Article 13 of the Oviedo Convention might also be understood in slightly different fashion, namely that the genome editing is admissible for therapeutic purposes, when the modification of the descendant’s genome is not the objective but is simply incidental to the clinical process.


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Corinne Othenin-Girard

PhD Student Sociology

University of Basel,

Switzerland

 

PhD Thesis on:

A critical social view at the projected clinical application of heritable genome editing (HGE).

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