With the arrival of CRISPR, gene editing has been established as a feasible reality for a multitude of applications, not only therapeutic, but also environmental, livestock and agricultural applications, among others (see the amplitude of possible uses of this technique HERE). Nevertheless, some of these raise important ethical and safety issues. See VIDEO
It is within this framework that Arrige (Association for Responsible Research and Innovation in Genome Editing) was launched. Its goal is to join forces in the establishment of a global governance of genome editing, constituting a platform in which all interested parties (researchers, companies, citizens, patients, bioethicists, NGOs, governmental agencies, etc.) can have their say. It also highlights the practical nature of the Association. “The parties involved in genome editing often merely highlighted problems, without going any further”, explains Lluís Montoliu, a Spanish member of the launch committee, to Diario Médico. “We want to work on guidelines, protocols, recommendations, procedures, etc.”.
Genome editing regulation initiatives towards a scientific community consensus
In July last year, Montoliu took part in the publication of a consensus report (see HERE) in which a group of experts proposed European regulation of genome editing. However, they soon saw the need to go beyond the framework of the EU, and so, on 23 March this year, a meeting took place in Paris in which around 160 representatives from 35 countries participated to launch the Association.
This initiative seems very interesting, given that it is certainly urgent to establish a regulation to accompany the rapid development that gene editing is currently undergoing, thanks to CRISPR. In the aforementioned consensus document, it is proposed “to reassess the ban on all modifications of the germ line nuclear genome for clinical application in human reproduction” (see our Special Report). Although it states that it is not yet time to bring germ line genome editing to clinical medicine, it adds: “until uncertainty about potential harms has been evaluated on the basis of the research”, which implies a position in favor of experimentation with human embryos. We believe it is fundamental to put the person at the centre of the debate, so that the development of these promising techniques is consistent with respect for human life and dignity.
ARRIGE has established a specific web domain (arrige.org); an email account (firstname.lastname@example.org); a twitter account (@ArrigeOrg); a blog, and an internal discussion email list, to promote the discussion and sharing of ideas around the subject of the responsible use of genome editing technologies.