Association for Responsible Research and Innovation in Genome Editing (ARRIGE) – Blog
Lluis Montoliu (Barcelona, Spain, 1963) graduated in Biological Sciences (1986) and obtained his PhD in Molecular Genetics (1990) at the University of Barcelona. Research Scientist of the Spanish National Research Council (CSIC) at the National Centre for Biotechnology (CNB), in Madrid (Spain) since 1997, after two postdoctoral periods in Heidelberg (German Cancer Research Center, 1991-1995) and Barcelona (Autonomous University of Barcelona, 1995-96). Since 2007 appointed researcher at the Spanish Research Initiative on Rare Diseases (CIBERER-ISCIII) where he is now serving at its Steering Committee. Since 1998 he is Honorary Professor at the Autonomous University of Madrid and, since 2007, Director of the Spanish node of the European Mouse Mutant Archive (EMMA/INFRAFRONTIER) Spanish node. Including his PhD, from 1986, where he worked in plant molecular genetics, in maize, he has been always working on the genetic modification of organisms (GMOs). Since 1991 he has been working in several scientific projects within the field of animal transgenesis. At the CNB he leads a research team interested in basic science, to understand the mechanisms controlling gene expression and organization in mammalian genomes, and in applied science, generating animal models for the study of human rare diseases, such as albinism. He has pioneered the use of in vivo genome-editing CRISPR approaches in Spain for the functional analysis of the non-coding genome. He is the current President of the European Society for Pigment Cell Research (ESPCR) and serves at the boards of additional societies (IFPCS, IMGS, ACB). In 2006, he founded the International Society for Transgenic Technologies (ISTT) for which he has served as President since inception to 2014. He is a member of the CSIC Ethics Committee and the Ethics Panel of ERC in Brussels. In addition to research he is also interested in bioethics, education and popular science.
We are most happy to announce the publication of the first e-newsletter from ARRIGE. This is an initiative aiming to establish a new communication channel with members of the association and other people interested in the responsible use of genome editing techniques around the world. The edition of this e-newsletter is led by Marion Abecassis and François Hirsch. You might wish to submit your contributions by email to firstname.lastname@example.org. Looking forward to receiving your input. I hope you will enjoy this first issue.
On behalf of the founding Board of the Association for Responsible Research and Innovation in Genome Editing (ARRIGE), I am most happy to announce the launching of the ARRIGE membership registration. From today, April 1st, 2019, roughly one year after we held the ARRIGE kick-off meeting in Paris, we will be gladly accepting your requests to formally become a member of ARRIGE.
Payment – After you fill your Registration Form (Step 1), you can pay your annual membership (in euros) (Step 2), via Paypal (using the form or directly with ARRIGE PayPal account at email@example.com) or from your bank app by bank transfer (in such case please send an email to firstname.lastname@example.org to be provided with bank details). Payment information can be found in this web site.
Why do we need ARRIGE?
Because ARRIGE is the most international of all existing initiatives discussing the responsible use research and innovation of genome editing techniques around the world. In Paris we already gathered delegates from 42 countries, including African, South American and Asian delegates.
Because we need to address the various and multidisciplinary issues related to or impacted by genome editing, not only focusing on human embryos. With ARRIGE, we extend the discussions to gene drives, intellectual property issues, GMO vs non-GMO, safety and security issues, biotechnological applications for agriculture and livestock, safe and efficient innovative gene therapies for patients, therapies vs enhancement, ethics issues, laws and regulations, etc…
Because there is no satisfactory platform engaging all kinds of public – public engagement platform – which is involved in the field of genome editing. At ARRIGE, we believe that education and dissemination of reliable news on genome-editing for experts, but also for patients associations and the lay public is fundamental to allow for democratic debates in the context of the emergence of a technology that bears the potential to revolutionize many aspects of our societies. We would like to use the expertise of ARRIGE to develop/assist in developing public engagement projects.
Consequently, we envisage the creation of expert multidisciplinary groups to tackle all these issues with input from all over the world, with the idea of creating genuine expertise and a real task force.
Why joining ARRIGE?
To be part of this initiative and be able to contribute with ideas, materials, guidelines, recommendations, protocols suitable for each one of the potential uses of genome editing, taking into account the views of all stakeholders. We will also plan to regularly organize meetings to discuss and progress in all these topics, and to help you to organize events on these topics locally. Forthcoming meetings are already planned in Paris November 2019 and Vienna January 2020.
ARRIGE members will be subscribed to a new email list (different from this one) and we will create spaces and resources for the efficient and operative discussion of all working groups.
Initial Categories of ARRIGE Members:
Individual (50 Euros/year)
Institutional (300 Euros/year, both for private and public institutions)
The ARRIGE Scientific Committee has been created and their duties include:
to provide a forum of experience and knowledge-sharing in the field of genome-editing
to ensure the quality and scientific integrity of the studies and reports undertaken by the focus groups of the Association
to be responsible for the quality and the scientific integrity of the ethical recommendations the Association may draft for users of genome-editing technology, national and international decision-makers and the civil society at large.
Members of the ARRIGE Scientific Committee:
Janet Rossant (Canada), Matthew Porteus (USA), Stephen Ekker (USA), Lydia Teboul (UK), Bruce Whitelaw (UK), Tony Nolan (UK), Yann Herault (France), Gaetan Burgio (Australia), Jerome Amir Singh (Canada), Eleonore Pauwels (USA), Ayola Akim Adegnika (Gabon), Fabiana Arzuaga (Argentina), Mylène Botbol (Belgium), Pierre Jouannet (France), Amar Jesani (India), Josep Casacuberta (Spain), Martina Crispo (Uruguay) and Juraj Koppel (Slovakia)
to promote a global governance of genome editing through a comprehensive setting for all stakeholders, including academics, researchers, clinicians, public institutions, private companies, patient organizations and other non-governmental organizations, regulators, citizens, communication media, governmental agencies and decision makers
to push forward the scientific, ethical, social, legal and political reflection in the field of genome editing
to foster the development of genome editing technologies within a safe and ethical framework for individuals and for our societies
the dissemination of reliable information regarding genome-editing technology for experts (all fields included), politicians and citizens throughout the world.
The Founding Board of ARRIGE is formed by:
President: Lluís Montoliu (Spain)
Vice-President: Hervé Chneiweiss (France)
General Secretary: François Hirsch (France)
Deputy General Secretary: Christine Lemaitre (France)
Treasurer: Cyril Sarrauste de Menthière (France)
Deputy Treasurer: Jennifer Merchant (France)
Legal Advisor: Marion Abecassis (France)
Board member: Bernard Baertschi (Switzerland)
Bruce Whitelaw (The Roslin Institute, Edinburgh, Scotland, UK) and I, we have just published a commentary in the scientific journal Transgenic Research discussing the case of the Nature Methods paper by Schaefer et al. 2017 who initially reported the identification of numerous off-target sites altered after a genome-editing experiment in vivo, in mice. This paper has recently been retracted by the journal (March 30). As indicated by the authors in this commentary: “The most plausible explanation for the vast majority of the reported unexpected mutations were the expected underlying genetic polymorphisms that normally accumulate in two different colonies of the same mouse strain which occur as a result of spontaneous mutations and genetic drift. Therefore, the reported mutations were most likely not related to CRISPR-Cas9 activity.“
The ARRIGE initiative is receiving plenty of attention and generating a lot of interest from media and scientific journals. This is the case of The CRISPR Journal, which features a description of the birth of ARRIGE in its second issue. This article is open access. If you want to know more information about the ideas behind the foundation of ARRIGE, how they were shaped, how they developed and crystalized in the recent kick-off meeting in Paris, essentially aiming toward the responsible use of genome editing technologies, you can now simply read this publication.
The ARRIGE initiative is being presented from various newspapers, journals, web sites and associations. One of the recent articles about ARRIGE, about its launching in Paris and its objectives, has been written (in Spanish) by Lluis Montoliu for the blog of ComunicaBiotec, a Spanish Association of Communication in Biotechnology. In this article, Lluis Montoliu describes the scenario where ARRIGE was born, the precedent activities and the future ahead, trying to promote the responsible use of genome editing technologies.
The Spanish newspaper DIARIO MEDICO, specialized in the field of health and regularly read by many professional colleagues including those from Hospitals, Clinics and Biomedical research centres in Spain, covered the launching of the ARRIGE and our kick-off meeting in a recent article, written by José A. Plaza and published on April 8, 2018. The article is in Spanish and is entitled: “Toward an international governance in CRISPR“.
Final comments, workshop conclusion and next steps by Lluis Montoliu (CNB-CSIC and CIBERER-ISCIII, Madrid, Spain) at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Final comments from Magnus Magnusson (Director of Partnership and Outreach, SHSS, UNESCO) at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Presentation by Lauren Roberts and Louise James (Genetic Alliance UK) on involving patients in the discussion of issues raised by genome editing technology at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Presentation by Béatrice Holtz (LAVOIX, Paris, France) on the Intellectual properties and economic issues raised by genome editing technology at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Presentation by Filipa Ferraz de Oliveira (European Research Council, Ethics sector, Brussels, Belgium) on the Animal issues raised by genome editing technology at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Presentation by Andreas Kurtz (Charité Hospital, Berlin, Germany and European Group of Ethics, EGE) at the ARRIGE Kick-Off meeting on the Environmental issues raised by genome editing technology. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Presentation by Peter Mills (Nuffield Council on Bioethics, London, UK) on Human issues raised by genome editing technology at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Talk by Hervé Chneiweiss (INSERM Ethics Committee) on the Ethics of the genome editing technologies: presentation of ARRIGE, at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Presentation by Mylène Botbol-Baum (INSERM Ethics Committee and Catholic University of Louvain, Brussels, Belgium) on “Taking seriously the anthropological and societal impact of genome editing technologies” at the ARRIGE Kick-Off meeting. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.
Review of ethics positions, reports, documents published on gene editing by other groups and institutions, presented by Ewa Bartnik (University of Warsaw, Poland), former rapporteur UNESCO IBC. ARRIGE Kick-Off meeting was held on 23 March 2018 at the Région Île-de-France Parliament, in Paris, France.