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24.11.2015 | Symposium Genome on Demand in retrospect

In view of the developments on the potential use of CRISPR/Cas9 technology to edit the human genome, The Health Council of the Netherlands (GR) and The Netherlands Commission on Genetic Modification (COGEM) organized an international meeting on 5-6 November in Amsterdam.

The new genome editing tool CRISPR/Cas9 puts the application of human genome editing to cure or prevent human disease high on the international agenda. The notion of human genome editing not only brings to mind the idea of living longer and healthier, it also raises profound questions and societal and ethical concerns. Human genome editing once more brings forward the challenge of discussing where to draw the lines regarding ethics and enhancement, and how to protect ourselves from losing personhood?

The speed of the international scientific developments urged organisations worldwide to discuss their role in the development and governance of this technology. Several international organisations got together since March to discuss their initial standpoint on this issue.

The goal of the symposium ‘Genome on Demand?’ was foremost exploratory. The programme was set up to inform the participants of the scientific developments around CRISPR/Cas9 technology and to provide food for thought about its possible implications from an ethical and governance perspective.

At the first day of this symposium, the development of the CRISPR/Cas9 gene editing technology was illustrated by Patrick Hsu from the Salk institute for Biological Studies. Xingxu Huang from Shanghai Tech University shared his experience on the application of the technology on animal models and Tony Perry from the University of Bath took it a step further by discussing the future trajectory of human genome editing.
Marcy Darnovsky (Center for Genetics and Society), Robin Lovell-Badge (The Francis Crick Institute) and Annelien Bredenoord (University Medical Center Utrecht) provided insight in the considerations with regard to the social and moral implications of this technology and addressed the importance of research using genome editing in human embryos and germline cells. More perspectives were added to the discussion after a dynamic Pecha Kucha session with Christopher Gyngell (University of Oxford), Peter Dunki Jacobs (Zilveren Kruis Achmea), Cor Oosterwijk (VSOP) and Henk Jochemsen (Wageningen University)

On day two the applications and technical challenges of CRISPR/Cas9 were further discussed from the perspective of the use of organoids (Hans Clevers, Hubrecht Institute), epigenetic editing (Marianne Rots, University medical Center Groningen) and the potential of CRISPR/Cas9 to correct genetic errors leading to hereditable diseases such as Duchenne (Manuel Goncalves, Leiden University Medical Center). The subsequent part of the symposium focussed on past and existing forms of governance and regulations. Ben Hurlbut (Arizona State University) critically explored the implications of the Asilomar model for governance of human genome editing. The Asilomar conference on the one hand symbolises the responsibility that scientists took to regulate themselves. But for some it also symbolises an overkill of regulations and the absence of a broader societal discussion and the involvement of important stakeholders.
Tetsuya Ishii (Hokkaido University) provided an t overview of existing international regulations on human germline and stem cell research. An illustration of hands on experience with an ethical review of far-reaching medical technologies on humans was provided by Geoff Watts from the Nuffield Council on Bioethics. They advised the UK government on the use of novel techniques for the prevention of mitochondrial DNA disorders.

The symposium was concluded with an overview of international statements and initiatives from the scientific community. The view of the International Committee of UNESCO was presented by Ewa Bartnik (University of Warsaw) and Robin Lovell-Badge elaborated on the statement of the Hinxton Group who emphasize the importance of the continuation of research at this stage. Furthermore an introduction was given on the upcoming Human Genome Initiative of the US National Academy of Sciences (NAS) and Medicine (NAM) who will hold an international meeting on 1-3 December in Washington.

The symposium was concluded by Frans Brom from the Dutch scientific council for government policy who cautioned a worldwide regulatory race to the bottom and stressed a the importance of the continuation and reflection on this important topic in the near future. The proceedings of this symposium will be used as input for the Trend Analysis Biotechnology 2015; a report that informs the Dutch government and the parliament on biotechnological trends, issues and challenges.

The organizing committee looks back at this successful event with great satisfaction. Once more, we’d like to thank the speakers and participants for their valuable contributions.

Photos: Bart Erkamp, Erik Kottier