Lancement d'une association internationale de réflexion éthique et sociétale autour des techniques d'édition du génome (ARRIGE)

A group of European scientists has founded an international association to discuss and provide guidance on the ethical use of genome editing, a technique with the potential to transform everything from food production and human health to science itself. Organizers launched the new Association for Responsible Research and Innovation in Genome Editing (ARRIGE) at a kick-off meeting in Paris this past Friday.

The high hopes and fears around gene editing—which has the potential to lead to new crops and the elimination of diseases, but also to “designer babies” or insects running amok—have been the topic of dozens of meetings and reports, including a high-profile “summit” in Washington, D.C., in 2015. National science academies and councils, the Council of Europe, and several professional societies have weighed in.

But some researchers worry that the debate isn’t broad enough, or lacks the kind of dialogue needed to reach a societal consensus on the introduction of such a pathbreaking new technology. At the Washington, D.C., summit, for instance, “discussion split into two camps: scientific experts explored technical issues, whereas scholars who study science and society addressed questions about the possible disruption to social norms,” Sheila Jasanoff of Harvard University’s John F. Kennedy School of Government and Benjamin Hurlbut of Arizona State University in Tempe wrote last week in a commentary in Nature. “The two camps did not inform each other.”

Jasanoff and Hurlbut invited three dozen social scientists, ethicists, religious thinkers, legal scholars, and others to another meeting, at Harvard in 2017, for what they say was “a different kind of conversation.” It asked what is needed “for a genuinely broad societal consensus on gene editing.” In their piece, the duo calls for the creation of a “global observatory” that would act as a clearinghouse for information, track the development of new ideas and tensions, convene meetings, and encourage debate.

The European group behind ARRIGE has similar ideas, although they started with something quite different. In a paper published in Transgenic Research in July 2017, 19 researchers announced the creation of a “European Steering Committee” that would assess the risks and benefits of gene editing and stimulate debate, with the aim of guiding national and EU legislation. They have since jettisoned that idea, in favor of a global association that comprises both individuals and organizations, and not just researchers but also patient advocates, nongovernmental organizations, industry, and others, says neuroscientist Hervé Chneiweiss of French biomedical research agency INSERM in Paris.

ARRIGE has a distinctly French flavor; it was set up with major support from INSERM and other French science agencies, the Île de France region, and three French embassies abroad. But it will fast become more international, says Lluís Montoliu of the Spanish National Center for Biotechnology in Madrid, a member of the ARRIGE steering committee. To broaden its geographical reach, the steering committee has already held meetings in Buenos Aires, New Delhi, and Brazzaville since 2016; the more than 150 participants at Friday’s meeting came from 35 countries. “Sometimes you need an organization to take the lead for an initiative like this, and I appreciate and clap my hands that INSERM took this responsibility,” Montoliu says. “But I don’t have any fear that ARRIGE will become only French, or mainly French.”

To bolster its long-term influence, ARRIGE will be permanent, Montoliu says. “Most reports state what the current scientific situation is, and what solutions for the near future could be, but nothing happens after that. We want to go beyond that, we want to create something practical,” he says. For instance, ARRIGE could draft procedures and guidelines for the assessment of genome-editing projects.

Ironically, the ARRIGE team wasn’t aware of the related efforts by Jasanoff and Hurlbut, Montoliu says, but he notes that ARRIGE’s plans align closely with the tasks their proposed global observatory would undertake. Conversely, Jasanoff—who wasn’t at the Paris meeting—says she didn’t know much about ARRIGE either, but is “absolutely delighted that there is resonance” and “enthusiastic about the potential for collaboration.”

Peter Mills of the Nuffield Council on Bioethics in London, who isn’t involved in ARRIGE but gave a talk about issues in human gene editing at Friday’s meeting, says the new group “has the potential to become a useful forum” if it attracts adequate resources and a substantial membership. “I wasn’t particularly optimistic going to Paris last week, but I was very impressed how broad the reach was, how many people from different countries they’ve managed to get to the meeting,” Mills says.

Will he become a member himself? That depends on how ARRIGE develops, Mills says: “Let’s see how it plays out.”

http://www.sciencemag.org/news/2018/03/interested-responsible-gene-editing-join-new-club